stage 1 of chiari malformation does it get worse

type 1 chiari malformation, does it get worse and is it heredity?

[Shane99]

Hello,

I'm not a health care specialist, just someone that has had chiari malformation surgery and has done research, so don't take my word as gospel, but basically "yes" to both questions.

All types of Chiari are congenital - that means you are born with it. And you can pass it along. That's not to say you will for sure, I've heard the statistics are around 14% chance - not a huge number, but a number to pay attention to.

I believe there are 5 types of Chiari. The scale of severity is rated 1 - 4, with 4 being the most severe. Types 3 and 4 are very rare. You don't go from one type to another, but they can get progressively worse in each catagory. For instance if you have Chiari 1, you won't ever have Chiari 2, but what you have can get worse. If you've been diagnosed with Chiari 1 and they haven't mentioned surgery, you'll just need to keep track of any symptoms and get regular MRI's.

The most common form of Chiari Malformation is Type 1, it often manifests later in life (not at birth, but sometimes in children) with headaches and cerebellar symptoms like dizziness and memory/concentration problems. The cerebellum in the lower back of the brain starts extending down past the skull into the spine. This herniation can, and often does, get worse. If you are diagnosed with Chiari 1, you generally will be told how far the herniation extends in millimeters. At around 8 mm, doctors start considering surgery. This isn't a set number and can be more or less, often the decision is made because of possibe damage to the spine - syringomyelia ( a blockage of spinal fluid that can lead to paralysis) is often (almost always) eventually assoiciated with Chiari. Mine was at 20mm and I was starting to show signs of paralysis when mine was discovered, so I was rushed to surgery. I only knew of the existance of Chiari for 3 weeks before my surgery, some people may be diagnosed and watched for years, even decades, before they need surgery.
  
Type 2 and beyond are often noticable at birth. They often causes partial or complete paralysis below the spinal defect and generally have noticable malformed brains at least on an MRI.

Type 3 causes severe neurological defects.

Type 4 involves a failure of brain development

I've also heard of Chiari "0", which is a form that doesn't have a tonsillar herniation, but can still cause symptoms.

There, that may be a lot more info than you were asking for or need, but...I sorta got on a roll :).

[youngwife]

Can Chiari get worse?  

Yes it can, but it doesn't always.  It will not progress to from Chiari I to Chiari II, though.  You either are born with type I or type II (or 3, 4, etc.).  There are people that live there entire life never knowing that they have Chiari I.  


Is Chiari hereditary?

Yes it is congenital.

[razzle5150]

chiari can get worse depending on size and etc . you may need surgery .
you can get Chiari from auto accidents etc and yes you can be born with it .
It is not a life sentence . Go to a NS not a NL . see what they say .

[lor124]

I have alot of the symptoms of Chiari ! and finally was diagnosed. I have less than 3mm herniation which my neurosurgeon says is still in the normal range. So I was sent to a headache clinic for treatment to rule out migraines. Went to the DR again yesterday for the headaches and she said I should go back to the neurosurgeon to discuss what to do next. She said if the neurological symptoms I was having were due to migraines they would have improved along with the pain. From what I have read Chiari is rare but for it to be so rare there sure are many of us out there suffering needlessly because our doctors don't have the proper education to at least know what it is and where to send us for help. I also have suffered since I was a child and have recently become very symptomatic. While talking to my siblings there are 4 of us that are having similar symptoms one has been confirmed and the others may or may not go to find out due to money issues and insurance. My biggest problem is the headaches and the constant tingling and pain. Sleeping is the worst. The headaches come in the middle of the night and they hurt so bad. Laughing is a real issue the pain is so intense it travels to my face, jaw and numbs my tongue. I feel like I'm paralyized. I can't speak or do anything but just sit there and hope it will pass quiclky. It's so scary!! I'm glad there are people like you we can talk to. Thanks for being there for us

[Shane99]

You are welcome. I'll try to answer any questions that I can.

Have your bother talk to his Primary Care Physicain and explain to them about Chiari and point out that 2 siblings have it and he needs to get checked. This way, the PCP can order it, thus insurance should cover it. Have him print of a basic fact sheet about Chiari for his PCP to read and even place in your brothers charts. A lot of PCP's know very little if anything about it.

If this bothers or insults his PCP or he refuses to schedule an MRI . . . change doctors!

The quicker this is diagnosed, the quicker it can be dealt with. Time is a MAJOR factor in Chiari.

[lor124]

Thanks for the info I'll pass it on!!  Maybe you could answer a ? for me. If there is little or no herniation and the MRI hasn't changed much in 10 years how is it the symptoms keep getting worse. I woke up a couple of weeks ago and my left side of my tongue was completely numb. It felt like somebody was trying to pull it out with a pliers.. the pain was unbelievable. Did you have problems when you laughed?

[selmaS]

there is a recently new description of chiari zero.....because they r finding that in some cases the amount of herniation does not mean there r 'nt ne symptoms.

when was ur last MRI?...I have seen that some on here had very little herniations and with an onset of symptoms had another MRI to find it grew!!

Good luck
Godspeed
"selma"

[lor124]

Selma Ive read alot about Chiari 0. I know I have had almost every one of the typical symptoms since I was a kid and they have recently gotten worse. My last MRI was 3 months ago and the results showed low lying cerebral tonsils but it didn't say how low. I was told less than 3mm. The neurosurgeon said she didn't want to do surgery on a "normal" brain so she sent me to a headache specialist to rule out migraines. They were able to lessen the pain with topomax (topamax) 25mg but all the neuro stuff didn't go away/ She says it deffinately is Chiari and suggested I go back to the neurosurgeon to talk about whats next. I think after reading some of these notes I 'm going to make an apointment with Dr. Frim. My sis has been in convo with you ..Rosebud3 thanks for your support!!!

[selmaS]

did u have a cine MRI?...to check for a syrinx?....also did they check for tethered cord?
I too have had symptoms since I was a child.....the brain pain from straining,laughing.....even hanging upside down.....they just sent me to a phyc....wanted to medicate me for anxiety......my most recent flare up of  symptoms started in May '07 I fell....no reason....but I sprained my left ankle and tore the minescus(sp?) so that required two surgeries...since then my balance is off, I am stressed to the max, I have tremors in my hands and numbness in my extremidies.....

Dr Frimm is very good......he is with a pediatric hosp, but many of the chiari drs do take care of adults as well....u'll be in very good hands.
how is ur sister doing? did she have her appointment?
say HI to Steve for me.

Good luck
Godspeed
"selma"

[jyojlynn]

Hi!  I am new to this forum, but so glad to have found it!  I feel like I have finally found others who understand what it is to go through the constant headaches, the pain, the numbness in my hands and feet, etc.  Mine has been getting progressively worse over the past 18 months or so.  I now slur my words, have been loosing my memory and stumbling alot.  I have been having a terrible time getting a diagnosis.  I have had this going on for 30 years - daily headaches for 30 years - and all I get is that I must be stressing myself out.  I KNOW that there is something physically wrong with me, but I can't get a doctor to say it.  Then I heard about Chiari and I felt like it was a gift from God.  My first appt. with a NS is on Nov 24 and I pray he finds something - anything.  I just don't know what to do if he treats me like the Neurologist have treated me.  Anyway - sorry to go on.  It is just so great to read messages from other people like me and know I am not alone - thank you.

[selmaS]

U may get the same thing u got from the NL.....because not all NS r specialists for chiari....where do u live?.....there are many chiari specialist out there, but depending on where u live u may need to travel.....I traveled an hour to hear the same thing as I got locally so I am going to where I know the experts r!!....chiari being congential means u had this all ur life and for 30 yrs of it u have suffered......sometimes it can be normal life that can cause CM to suddenly start to worsen......Have u had a dx of chiari , or suspect it's chiari?....u need an MRI and then u need to know if u have a CSF blockage...CINE MRI will let the dr know if there is ne thing other than chiaari going on.

Keep us posted
Good luck
Godspeed
"selma"

[jyojlynn]

Hi Selma!  Thanks for all of the words of wisdom.  The NS I am going to actually does specialize in Chiari and he was recommended in a really weird way to me through my husbands therapists because his daughter has Chiari.  I have actually had a few MRI's but no one has ever looked for this.  The very first one I had the report said one small sentence that I had a Stage I Malformation, but that was never repeated again.  Since I didn't know what that mean, and my reg dr didn't know, we didn't think it meant anything.  That was 8 years ago and since then I have not even heard the word Chiari at all.  That is why I am praying this will be a positive diagonosis for me.  I just had another MRI with contrast on Tues, so hopefully it will show up this time.  By the way, I live in a small town in Wa state, so I will be driving almost 4 hours to see this dr.  I am just grateful for this site.  I feel like I have found a whole group of people who truly understand what it feels like everyday.  Thanks.

[Shane99]

Have you been to the Virginia Mason Medical Center in  Seattle, WA? They have chiari specialist there I believe? Dr. Michael Elliott Dr. Mariko Kita.

[jyojlynn]

No I haven't been to Viginia Mason.  I am going to see Dr. Jacob Young in Bellevue.  He does practice at VM, though.  If he doesn't work out, I will check out the others you have recommeneded.  Thank you, Shane.

[selmaS]

keep us posted on how ur dr visit goes.

Good luck
Godspeed
"selma"

[lor124]

I was amazed by the caring people I have found on this site too. I look forward coming home from work just to hear how others are progressing with their appointments. It's like having an extended family ...and they really care!!!! Shane and Selma seem to understand more and can explain things better and they give us newbies alot of info.

my doctors have dx me with low lying cerebellar tonsils and was told 10 years ago I had to go to Chicago to get part of my skull removed. I thought the doctor was a quack so I dismissed his findings. I have had tingling in my face, feet, hands and tongue for years. About 7 months ago the daily headaches started along with the dizziness and upset stomach. I too slurred my words and can find them sometimes. I pleaded with the doctor to please help me so he sent me to get MRIs of my brain and cervical spine. They found a non cancerous spot on my c-6 along with a bone spur. My doctor thought he found my problem and told me I had to have surgery so he sent me to the NS. The NS dx Chiari and sent me to another NS to have the surgery since he didn't do it anymore. That doctor wanted to make sure I wasn't just having migraines so she sent me to a headache clinic. They tried a few types on meds which relieved the pressure and the headaches werent so severe (although the side effects of the drugs were worse than the headaches somedays) the headache clinic has sent me back to the NS to discuss the next step. I haven't made the appointmnent yet for one I'm scared and two the holidays are right around the corner. The third and biggest one is my husband is disabled and can't work so if I go down we will be in trouble financially. I work as a manager for a large welding supply company and am around hazardous materials daily. They have been very supportive but I'm sure there is going to be a time when I'm going to be a safety hazard and I'll probably will have to quit. I'm not looking  forward to that at all!!  Anyway enough with me ... Let us know what you find out from your NS maybe you'll get the Xmas gift you've been waiting for... I was so relieved when I finally found out there was something wrong and I wasn't really crazy!!!   Hope you feel better

[Juelsb]

My 5 year old son was diagnosed with a chiari 1 in September with an 8mm measurement. They told me that he should be at least at 10mm before it causes him problems. He does have a short neck because he has some short vertabraes and fused vertabraes in his neck as well. We just went back to the neuro because he is complaining of his legs constantly either they feel like people are running all over them, they are asleep or they just hurt. my son told the neuro that he fell down the stairs and the neuro decided to order an mri of the spine now. He is constanly holding the back of his head, telling me things don't look right (he said he sees two of things, the neuro said he can't see two of things since he is blind in his left eye), constant leg pain, ocassional hand pain and arm pain, slurred words that we attributed to him being so tired all the time, he raises one side of his mouth when he smiles or talks (started in the last 6 months). Can these symptoms happen or progress that quickly? I am not happy when they are deciding treatment based on a number. They say becasue he can still function he is fine. The child has been through at least 15 surgeries in his 5 years of life so far....he has a high tolerance for pain. What do you guys think?

Any help would be greatly appreciated. I need to understand what he is feeling and how to help him.

Thank you and best wishes to all. It is hard to watch my son moan and groan in his sleep night after night, I can't imagine how everyone here feels as well.
Julie

[selmaS]

Julie, it appears u were to see a NS that is not a chiari expert.U need a specialist for ur son.
We have a thread with names of chiari drs members have used....if u don't find one close to u , we can help u locate one. U may find that u might have to travel to get to one.
A chiari specialist will know that chiari without a herniation can cause issues.

I don't know what else u son has endured, but I would deff find a chiari specialist.

Please continue to update us on ur son's condition, and know u can post here for support there r other parents here u can ask how they r managing.

Good luck
Godspeed
"selma"

[Diego619]

i have diagnosed chiari malformation 1 six month ago and I'm on Dimax but i'm having sevear back pain. I leave in San diego area please could you help.

[Shane99]

Diego,

What are you needing?
I'm not familiar with Dimax, is that a pain killer?

Do you have a Chiari Specialist in charge of you case?

[selmaS]

Welcome to the Chiari forum.....as Shane asked is ur attending dr a chiari specialist? It is very important that u have an expert.

I am not familiar with Dimax either......

I hope u continue to post here, it's a great place for info and support!!

Good luck
Godspeed
"selma"

[gabalab]

my 7 yr old was diagnosed with a 15 mm chiari type 1 and recommended for surgery not to be pushed off, the doctor also mentione da possible need of fusion, that really goot me scared when he told me the fusion would cause her to loose 40 percent of her neck movements in all directions. does anyone know about chiari being associated with the need of fusion, or the riskd s of not taking a fusion.
HELP

[selmaS]

Hi and welcome .

15 mm is considered a big herniation.The fusion ur r askin about is for cranial instability....one dr explained it  as if u put a pumpkin on a pointed stick....it will not be able to stay at the top....it will slide down....this is y they do the fusion.

I believe many with this also have EDS...Ehlers Danlos syndrome...it is a connective tissue disorder and it is common in those with chiari.
My one friend has it and if u would like more info please let me know.

I know these conditions r very scary and overwhelming, but we r here and will help ne way we can.

Godspeed
"selma"

[gabalab]

Thank you,
the funny thing is my daughter does not haver any symptoms or pain or chiari symptoms (nor any eds symptoms) we just took the mri because of scoliosis appearing.
The "pumpkin on a stick" won't that get cured after the chiari surgery,
Do all Docs that treat chiari perform the fusions i heard that they tend to stay away from fusion do to the risks and results involved, if a fusion is necessary does that mean she is in  risk of god forbid the pumpkin falling off the stick if not done rigth away,
meanwhile i will be taking more mris to see the severity of the level of fusion if necessary, we are praying that it wont be necesarry, because that would make her an "invalid" in a way for life..
Were looking into Dr menezes of Iowa or Dr Michael Scott of Boston's children hospital...

[selmaS]

...as I said I am only going on what I heard at a conference describing what this condition was...the head becomes heavy and the patient has difficulties lifting their head...and because of it slipping down there is compression on the spinal cord...the fusion is an attempt to hold it in place above the spinal cord.....if u get the compression u will have the symptoms as well as possible nerve damage if left too long.

Funny u should mention Dr Menezes...he is the Dr that referred to it as a pumpkin on a stick!!....Good call!! He has a very nice personality and a nice sense of humor.I enjoyed his talk.

If u want more info I can give u my friends blog link....I also met a woman that had the fusion...she did quite well....she appeared to have a stiff neck.....I look like that alot without the fusion...so ....it is something u need to look into futher.

[sicily777]

Hi I have chiari malformation type 1.  It's at 5mm and has been at that size for the last 6 years.  Will it get bigger or will it stay the same size?  My headaches are very severe and I have too take several pain meds just to function.  Would you recommend decompression as a solution?

[selmaS]

Hi...We can not say if the decompression surgery is something u should do, but I will say u should deff see a chiari dr to see what he suggests for u.

The size of the herniation is secondary to wether or not u have a CSF blockage.
Symptoms also play a big part of determining if surgery is a possibility.

As to will ur chiari grow in size....it is possible...chiari can grow slowly with no nocticable changes in symptoms and then one day u r hit with major issues.

Chiari can also grow rather quickly and cause serious issues as well. A fall or an injury from an accident or jarring bumping into something can cause this to happen.A rife on an amusement ride...ect....

Everyone with chiari should be under a chiari drs care to monitor it's progression and to get treatment at the proper time.

If u have more questions please start a new thread, as it will be more noticable to our members.

"selma"

[sicily777]

thank you for your advice.  How do I start a new thread?

[selmaS]

First r u in the chiari forum or in ur home page....if in ur home page click on the My Shortcuts top right of ur screen....it is a drop down and then click on chiari ....u will then enter the chiari forum and u will see the top post is a welcome...please read this and to the left at the top just above the welcome post is a green button ...this is to post a question...that will start a new thread.

If u have difficulties please let me know.

"selma"

[shell68461]

Hi I found out I had Chiari 1 in the hospital when they took an MRI  I had a car accident back in Aug, they told me to do pt and chiropractic to help.. things only got worse!  Especially after the chiropractic, my whole neck and head went numb after one session.  I have had a multitude of symptoms since. Numbnesss, nerve pain in hands, and arms, tooth pain, trouble walking, dizziness, I could go on.  I am going to the Chiari Institute in Long  Island.  I have two small children and a husband who is reallly not supportive... does anyone out there have small kids?  I'm finding it hard to take care of myself day to day let alone my kids or husband.  I only take advil, motrin and adivan for anxiety... Does anyone have any suggestions, do you have people come to help you? My sisters were coming to help for the last 6 months, but they are burned out and I don't feel any better, in fact I feel worse in some ways.. my equilibrium is bad.  I also have bulging disks in my neck from the accident which started this nightmare.   Michellle

[selmaS]

Michelle....u will be told time and again...if u have chiari NO CHIROPRACTORS...thay can make it worse...we r even told to avoid a massage in the area of the neck.

TCI is very well known for the treatment of chiari.....I am also hoping to hear soon to go for an eval.

There r other members with small children, I only have one and she is grown and out of the house.....I no longer hold a full time job.....

Many of the symptoms u mention r what we all have had at one time or another.....chiari symptoms can cycle.....just when u think, mayb I'll be ok...u get hit with a flare and u can't take it.....ups and downs r normal.U will learn how to compensate in order to do things....

Do u know if they said ur chiari was aquired or congenital?...did they check u for a syrinx or tethered cord?....how's ur BP?

Finally do u have all ur MRI's on disk and the reports?...

As for ur DH ...have him watch the video's on TCI's web site...do not watch ur self.....wait till after the surgery unless u r ok with it.....but if he see's what all is involved and see's it can make a big difference....for yrs I complained with symptoms and issues and my DH was not affected until he went to a NS visit with me and read info online....

I hope this has helped....but know that is also y this forum is here...to listen, care and support u...and let u know u r not alone.

Godspeed
"selma"

[mik11]

My son had the fusion along with 2 rods and screws. The reason was not only did he have chiari 1 but also a basiliar invagination. Did your docs mention  the possability she might have it also .He had his surgery at the end of july and is doing great! He lost some neck movement but not much at all. Ive heard Dr Menezes does alot of these cases.
Mike

[JewelsIbarra]

Has any one ever heard of Dr. David F. Jimenez in San Antonio, Texas who is head of the Nuerosurgery Dept for Adult/Pediatrics? He is scheduled to do my decompression? Any information is greatly needed.

Thanks,
Julie

[tim_timani]

I have chiari type 2. Had the surgery on sept 17,2001. I believe I was 18-22mm descended than. not sure now though as I have not had another MRI since. Recently I had a significant neck pain issue that got so bad, so quick, that I had to buy a recliner and sleep in that for 3 months because I could not lay down without pain.  Has anyone experienced something this bad post surgery... so far along after surgery?  I am now so scared to do anything physical or risk another episode.. Even swinging a gold club frightens me. FYI the surgeon ended up taking out the back half of c1 and c2 vertebrae to make room for the brain. Has this happened to anyone here... no fusion additionally.  It worries me b/c my head feel very "heavy sometimes and I often wrap a throw blanket around my neck to take the weight off.  the "pumpkin on a stick" comment in one of the posts above really scared. me.  Anyways I am wondering if anyone has done specific neck strengthening exercises to help with the pain in the long run.

[selmaS]

Hi Tim and welcome to the chiari forum.

May I ask, was ur NS a chiari specialist?...were u chcked for other conditions related to chiari? Sometimes anoter undx condition may show it's head after a surgery.

[Chiari malformation type 2: A rare malformation where the base of the brain enters into the upper spinal canal. The extent of the deformity is greater in type 2 than type 1 and hence the symptoms are more severe and are often associated with a myelomeningocele (opening of the spine and spinal cord). ]

Chiari 2 is usually dx in children.

As far as ur concerns with the heaviness of ur head.....u saw my comment that was basically a quote that Dr Menzese (sp) said at a conference last July in describing cranial instability in which a fusion is done.

I am not sure what ur surgeon did removing part of ur vertebrae but cause instability...chiari specialists will remove part of the skull to make room and most use a patch of some kind.
U should also have follow up MRI's starting with a post op one and then every so often afterward.

Let us know where u live and we will try and give u names of specialists close to u, but please be advised most of us do need to travel to see a true chiari dr.

there is a tread chiari specialist thread....look at this list created by our members of their drs they have been treated by and liked.

I hope u continue to share ur chiari experiences with us

"selma"

[tim_timani]

Hello Selma and thank you for such a quick response.  My surgeon was Dr. Richard Ellenbogen. I live In Lynnwood Wa. and he works in Seattle so I did luck out to not have to travel far at all.  He did take out part of the lower skull too. He said it was one of the worst he has seen that did not include a syrinx.  I first started getting the pains at 13 years of age after playing sports year round since I was geez....6.  It was really hard for me to quit sports and because I did not know what I had until age 18 I just kept popping anti-inflammatories and pain killers so I could go play some basketball, baseball, anything.  So I am clearly paying for it now. My concerns about my neck are pretty severe right now.  Just a year ago I wasn't having any neck pains and now everyday it is a constant power struggle between babying my neck, working full-time and studying for school.  I came to the realization not too long ago that I will eventually be unable to work because of Chiari, so now I am in the mode of I need a quality education in order to get behind a desk in order to delay that day as long as possible.  Has anyone out there managed to relieve there symptoms with neck targetting exercises. I find that massage and sacrocranial therapy helps but it hasn't gotten me too 100% and it is so expensive too. Any advice would help.  I bless all of you cursed with Chiari.

[selmaS]

Hi Tim,

It is a possibility u may have cranial instability......it could be a result of the previous surgery.I am not aware of an exercise that will work, I was told to try Feldenkrais Method by the NL at TCI- I just got the book snf have yet to read it.

Since u r having issues, u should contact ur dr.The drs name does sound familiar....I will look at our specilalist thread.

"selma"

[dskillet7111]

just  found out that they want to do surgery on 7 yr old son,NEXT WEEK, talked to the dr. about a month ago and was told it was an option that we might want to consider at some point, then they call and say they can squeeze him n, pre-op on 28th, surgery on 30th, but wont talk to dr. till day of surgery, preop with someone else,.is this normal, the case manager doenst know or cant tell us anything, WILL ANYONE THAT HAS WENT THROUGH THIS PLEASE RESPOND, what do we have to expect? any help or persepective would be so appreciated

[selmaS]

Hi and welcome to the chiari forum.

I have not been thru the surgery process as of yet, but we do have a thread called "How many Zipperheads" this is a place to find members that have had the surgery.

From the experiences they have shared, it will depend on the individuals symptoms and condition of CSF blockage and if the dr feels paralasis may occur or is starting as to how quickly they move forward.
Also, children do recover better the sooner these things are addressed, I would contact ur dr via e-mail and ask him/her to address ur concerns.

I am sure the members (zipperheads) that have been thru the process will coment.

Godspeed
"selma"

[rusty809]

I had chiari surgery about 4 yrs ago,  it didnt help much still have bad head aches horrible jaw pain, any way my son was diagnosed last yr, my ? is how seriously should I have my Daughter looked at, she is 8 and complains of headaches all the time??? Any advice would help

[Shane99]

They are discovering that Chiari is, in fact, heriditary. The statistics I've seen suggest around a 14% chance of it being passed on.

So, while 14% isn't a huge number, I would say it's big enough to have her checked.

[rusty809]

Thanks for your info. It is kinda nice to know I am not crazy, or have another illness... so many symptoms so little relief!!!

[DONALLA]

does anyone know a chiari neurosurgen specialist in NY or long island??
my daughter is 26 and has chiari and has a 5 yr old autistic son . she needs a good dr. to lead her in the right direction... seems like no dr. wants to get involved... she need to take care of her son and cant .

pleaseeeee help!!!!!!!    ANYONE

[selmaS]

HI and welcome to the Chiari forum.

YES !!! The Chiari Institute is in Great Neck, NY.
I just had my PFD  at TCI and am doing really good. My Dr was Dr Insinga and I was pleased with him and his bedside manor.

There are links for the chiari Institute in our Health Pages and contact info in the thread of chiari specialists.

If u need help navigating please let us know.

"selma"

[peb323]

I had my eyes examined and was told that I needed to see a neurologist because they could tell there was pressure behind my eyes, so I went to see an Optical neurologist He did tests and said that I have a parcially empty sella.  He said I probably had it since birth and not to worry about it, but to have it checked every couple years.  I have suffered with panic attacks from about the age of nine and I was wondering if anyone else has the same problem?    They continue to get worse as I grow older.  I have migraines and neck pain at times.  I also have trouble sleeping and nightmares.  I had trouble in school with just about every subject because I could not concentrate.  It is still hard for me to read and remember what I just read. My spelling is terrible I am greatful for spell check.  It is getting harder to stay working because of the panic attacks.  Please let me know if you also have the panic.  Thanks PEB323

[geckodragon27]

In July I was diagnosed with Chiari Type 1.  I went in after I had an MRI done on my neck and lower back since I had little feeling in my right side and was being diagnosed with TMJ yet my jaw moved fine...just the severe pain/pressure in my neck, jaw and head.  I didn't even think to tell them all of the other issues that I had thinking that they were due to my getting older...(I'm only 32) LOL.  
I was sent up to Harborview Medical Center and was supposed to see Dr. Ellenbogen.  However, he was on vacation so I saw a Dr. Avelleno there who said that I most certainly did NOT have Chiari (after he asked why I was there...hmmm...shouldn't he know that, he had my file) he brought my MRI up on his computer screen and did a quick measurement on the screen, said I didn't have tonsills that were distended so where did I come up with my information.  I was devistated.  I was truley hoping that someone had finally figured out what all my pain was from and here he is telling me that I need to see a Nutritionist a Physical Therapist and a Psych.  WHAT???  
I went back to my Surgeon who originally had sent me to this "Dr." and asked just how sure he was on what he had seen.  He told me that there were three surgeons and all of them see the same thing.  However, he said that if the dr had read his notes he sees that I have Type 1 with a very little amount of decent of the cerrebellum.  With symptoms like I have do they even fix Type 1?  Before they become permanent?
So now I am going back to Seattle to have an MRI done of my brain and to meet with the Physical Therapist.
I only thought that the headaches and neck pain were from this.  But when I told them about all of the other stuff that I had never thought to persue I was amazed that it all fit.  I have had Ulner nerve surgery on my R. arm (didn't work at all) the Neurologist wanted to do it on both of my arms now (until this recent MRI that is), I have very little feeling in my legs and feet, I forget why I stood up and short term memory loss *****, blurred vision and ringing in the ears along with hearing problems that comes and goes, I get dizzy when I move too quickly, seem to have been born with two left feet since I am such a clutz, severe pressure in my head, neck and jaw area that comes and goes, I can't sleep 90% of the time or stay asleep and I feel 90% of the time like I have RLS (restless leg syndorme) ALL over my body!!! The worst part is each day I never know just how I"m going to feel.  One day I hurt so bad seep doesn't even sound good and crying makes it worse and this will last sometimes up to a month.  Then the next day I wake and and the worst thing wrong is I still can't remember a darn thing and I have a slight headache. I  can go a few days to a few weeks with acceptable amounts of pain.  Does Chiari actually do this...flare up then flare down?  Or is it just all in my head.  No one I asks seems to know!!!
But this "Dr." in Seattle said that it was all in my head and that I do not have Chiari.  Talk about a bunch of doctors doing a tug of war on a patients emotions.  I don't know what to think!  I have two young children who see their mother fading faster then I would like to admit!
Someone out there please tell me to keep hope because after year after year of this pain and the decreasing amount of feeling I have throughout my body is absolutely scaring the tar out of me!!!

[selmaS]

Hi and welcome to the Chiari forum.

It sounds like u may have chiari 0......chiari malformation is when the area of the skull is too small to hold the cerebellum.....and can cause it to herniate. It can also cause overcrowding and that can cause symptoms as well as having a herniation that causes a blockage of CSF.

Ask to get MRI's of ur cervical spine, thoracic and ur lumbar, and also a CINE MRI...u want to rule out a syrinx, a CSF blockage, tethered cord, EDS, intercranial hypertension and ne other chiari related condition.

There r many drs out there that do not recognize chiari 0....it is a realativley new term and discription.

We all can relate to ur symptoms and ur frustration.....

"selma"

[selmaS]

...oh , I forgot,  yes chiari can flare up and down...I called it a cycle.....

"selma"

[2468hall]

does deg disk have anything to do with chairi type one i was diagnosed on an mri to have chairi one. Im scared have all the symptome including loss of concetration and memory loss.

[selmaS]

yes, as I mentioned in ur other thread many with chiari are dx with DDD and stinosis, thyroid issues....not sure how they r all related, but we all do tend to have them.

"selma"

[suze930]

I was finally diagnosed by and MRI after a year of daily severe headaches.   The CT was normal.  Especialy when I laugh, its almost paralysing.  Like someone is pinching my brain.  I have 3 kids and because of my Chiari 1 malformation (15mm) i dont even have a social life anymore. The doctors in Australia dont even want to operate on me because they said its not guaranteed.  So can someone who has had the surgery please get back to me that has had success?  The neuros here are really conservative and have basically said "find some pain management".  They have also said that there are risks with the spinal decompression surgery.  Well, the pain management doesnt work.  The topomax (topamax) (50mg morning and night) Im on has taken the edge off a bit, but I still get a daily headache.  I wake up in the middle of the night EVERY night with a headache and have to move my head position to make it more comfortable.  Its so debilitating. Memory loss is also an issue and tingling in the extremities.

[selmaS]

Hi,  there is a thread here titled How many zipperheads and many of the members have shared their experience after surgery.

I have my experience posted in my profile page if u would like to read....I am only 3 months post op and still am not sure what benefits besides being able to sleep and feel refreshed.....I know I am still healing, so it is diff to say all the benefits I will have.

But, with the diff I have already I am so gladI had the surgery....numbness I had is no longer a constant bother....

There r no gurantees for ne surgery or procedure....and there is no cure for chiari ....surgery will only slow the progression  and hopefully result in not having all the symptoms that can develope.

I am sure if u contact Hursty48 she will be able to get u in touch with her dr, she lives in Austraila and has had surgery.

"selma"

[froggy300]

I need help.  i am in upstate ny,  through out the years i have had neck pain,  lower back when pregnet.  2 yrs ago the neck pain got worse.  its hard to hlod my head up, pain going down rt arm,  sometime tingling in left.  nerve pain in fett and legs.   my hands and feet also fill up, like a swellng, just like a rush of fluid.  mri showed 2 small protrusion in neck and 2 small protrusions in thoratic area.  also mild scoliosis. i have been told that this shoulnt be happening,  and it was either anxiety or perimenopause.  (lol)  but im curious my sister has type 1  and my mri said that my cerebeal tonsils were extended 3mm but within limits.  they see neck swollen,  but i still get a run around.  nothing shold hurt..  i live and work on a farm, which could be i just hurt something and they can see it,    but this thread has me wondering.  I am on disability with medicaid,  so i dont have much options.   im lost..   any advise would be app.  i cant here the word anxiety  one more time.  yes i now do have anxiety cause i can find help.

[heideez]

Hello! Glad I found this site, my 16 yr old has suffered from headaches the past 6 months, saw a nuro, had MRI that showed what he is calling tonsillar ectopia. As I start reading from this forum I find that it is apparantly called Chiari and also they have measurements of something? My daughter has also been diagnosed with Optic Nerve Head Drusen and also scoleosis, could this be associated with Chiari? I am very nervous since she is so young and would also like to know what at Chiari specialist is.They have put her on medication, but dr. said it wouldnt work since her headaches come and go so quickly. So very glad you are here, Very Worried.

[selmaS]

HI and welcome to the Chiari  forum.

Yes, ur DD has chiari and a specialist is a NS that has his/her practice focused on chiari and related conditions.

There r many NS that measure wether or not someone has chiari by the size of the herniation....which is not the one aspect to look at.....is the CSF flow...is there a blockage....overcrowding and symptoms/quality of life should be strongly considered.

Related conditions like tethered cord and syringomyelia should be ruled out....and yes scoliosis is related to tethered cord.

There r several chiari specialists listed on our specialist thread...research all drs and find one u feel comfortable with.
Many of us do have to travel in order to get to a chiari dr....

"selma"

[Jenthefisher]

Hi,
I was diagnosed with Chiari I this past May, and saw neurologist who told me to live my life normally. Quickly realizing normal wasn't possible anymore with the constant dizziness, floating feeling, balance issues and difficulty sleeping and swallowing, I realized I need a better answer than this. I live in St. Cloud MN, and am on a waiting list to be seen at the Mayo clinic with a specialist. I was just wondering if anyone knows of a good doctor around here. I am hesitant of the surgery as I have seen from many the continued or worsening of symptoms, but I want to discuss my options. It is just nice to see all the other people out there dealing with this on a daily basis. It helps me to feel not so alone.

[selmaS]

Hi and welcome to the Chiari forum.

Not sure who is near u regarding a chiari specialist. Please see our specialist thread here on the forum. Research the drs to see if they r true chiari specialists.

With the symptoms u mention it sounds like they r from ur chiari....and u r right they make it diff to live a normal life.

I also understand ur concerns with the after effects of surgery, but u also need to consider what no having surgery or waiting too long can also cause issues. Plua having the wrong dr can also add to the issues after surgery.

We all go thru wanting to avoid the obvious problems and hopefully gain our freedom from pain and the restrictions this condition puts on us both physically and emotionally.

The members here r a great group and suppory each other with kindness and love.
I am sure we can help u find answers to ur questions and listen to ur concerns.

"selma"

[n40066]

hi jen!

welcome about aboard the chiari ship!  all of us here are having or have had the same feelings you are experiencing right now.  there are some rough seas out there, but together we manage to somehow pull thru!  

i find it somewhat ironic that you mentioned the mayo clinic.  i was just researching them an hour ago!  lol!  must be kismit!  lol!  i have been told i am a candidate for the surgery, so am exploring my options as much as i can.  the mayo clinic certainly has a wonderful reputation.  i don't recall anyone else saying they are from your area, but that doesn't mean much.  like many chiarians, my memory isn't that great!  and that's being kind!  lol!

i hope you'll stay with the group!  as our fearless leader said above, we are a great bunch of folks!  and we certainly understand what your feeling and going thru better than anyone!!  : )  i have found a support system here that is not matched anywhere else and the advice/suggestions have helped me along in my journey down this bumpy chiari road!

so...once again, welcome!  we're glad to have you on board!
elizabeth

[anm830]

I heard that your chiari (mm) cant get worse unless you have tethered cord. Is that true?

[Jenthefisher]

Thank you both for the welcome. I can definitely see how helpful this group is for many and I intend to be an active member here. That is rather ironic that we were both talking about the Mayo at the same time. I don't know who I will be seeing or what their reputation is for Chiari there, but I do know they have specialists for it and hope to find a good one. I know things may get worse if I leave them untreated, and that is very evident for me. Before this past May I had no idea I had anything wrong with me. But after a vacation and an illness coming home I developed my symptoms and things have never been the same since. Hopefully I can talk about my options with the doctor and weigh out the risks and benefits to make the best decision for me. Thanks for responding so quickly, and I look forward to talking to you all soon.

[selmaS]

U r welcome : )

"selma"

[amckinney37]

Today i found out i have Chiari 1. I'm afraid because I don't know what the surgery will be like. cansome one tell me

[selmaS]

Hi and welcome to the Chiari forum.

Everyone's experience with the surgery will be different....if u click on my name it will take u to my profile page and I have a journal posting on my surgery, plus a few pics.

Were u told u were a surgical candidate?

"selma"

[amckinney37]

Sorry it took me so long to answer. But the answer, I'm going to the surgon so to find out because they say it is a big concern.

Thank you for answering.
amckinney37

[Laura667]

Hi, I was diagnosed with chiari one, in April 09, my ns found I had 2 ruptured disks, one in my neck with spurs, the other with a tear in my lower back with a tear, in finds these problems he found the chiari.  He told me DO NOT GOOGLE THIS.  It took me about 2 wks to do so.  Went back to my ns he set me up with the all familiar ct's and mri's and foun a brain tumor the size of a peach behind my left ear which was removed May 15, 09.  I was very thankful for the finding and removal of the turmor But!  I had another ct last week, my brain seems to be ok, I can't get him to tell me a thing about the chiari, I told him I the reason I came to him in the beginning was the pain I have all over my body, now the dizziness, it moves around and sometimes it is so bad I can't stand it.  He said he could do surgery for my disk problem but couldn't help me with anything else, I feel like they all think I'm making all this up and am a drug seeker. I asked him the second time since my surgery about my chiari, he said yes you have it you will always have it but you have no symptoms so he disregarded my ?, the facts about this is he doesn't have a clue what my symptoms are other than I hurt all over and he can't help me. Well to be new to this forum I sure have vented in your space, thank you for that, maybe one of you will give me a direction, tell where to go ? Just fyi I'm a 51 year old female in Oklahoma.

[selmaS]

Hi and welcome to the Chiari forum.

U had the typical responce from a Dr that knows little about chiari and it's symptoms. U deff need to see a chiari specialist. We do have a list here on the forum and in our Health Pages.

Most of us do need to travel in order to get to a specialist.U may also want to check with ur insurance to see what it and where it covers.

We also have a symptoms page in our Health Pages.....

Did ur drs do ne other testing?....u should have a brain MRI w/wo contrast, cervical spine MRI,. thoracic spine and lumbar spine...and a CINE MRI (this is a flow study) to determine if u have a CSF blockage...the other MRI's r to see if u have a tethered cord or a syrinx which r chiari related conditions.

We have a wonderful group here very supportive and willing to help share info.

Please feel free to ask thru the public forum or PM members with the PM feature (private message)

Godspeed
"selma"

[rod44]

Hi and welcome,
there in not much I can add to what selma said.

This is a good place for support, information and to vent ect so look around at some of the other posts and the health pages. Look at the related illness. Knowledge is power when it comes to you illness, educating yourself about your illness is very important so that you know when you are being fobbed off by a doctor.
Little is known from my own experience by the general medical profession so seek out a NS with experience of CM.

Ray

[n40066]

hi laura!

welcome to the family!  ditto to everything selma and ray said!  but, just fyi...we don't consider it really to be ranting unless it takes at least 10 minutes or more to read your post!  lol!  

but seriously, while we are sorry about the reason you are here, we do welcome you with open arms!  vent away!
elizabeth

[Laura667]

Hi, thank you for taking the time to respond to my misspelled, repetitive blah blah.  Have you known about this long?  Your health?  Do you mind telling me about your health history.

[n40066]

hi laura....i don't mind at all.  i found out the first part of august 09 that i had cm1 with a 10mm herniation.  it was an "incidental" finding and the dr. totally dismissed it.  when i called my ra dr that refered me to the nl to get the results of my brain mri, he told me they found something, but he didn't know how to pronounce it and didn't know what it was, but he was sending me a link via email.  he did, however, in his infinite wisdom, tell me it was nothing to worry about because the nl told him it wasn't!  lol!  but in all fairness to him, he is an ra dr. not a nl or ns and i really do like him alot.  so, he refered me back to a ns in the same dept. as the first nl.  i got nowhere fast with the nl who ordered the mri to begin with or others, including his boss, in the same department.   they refused to even consider my cm was causing any of my symptoms and told me i had pulled muscles.  it was, to be honest, a very insulting appointment.  

my symptoms are fairly classic and typical of chiari.  headaches, neck/shoulder pain, tingling/pins and needles sensation, tinnitis, constant fatigue, decreased memory, brain fog/cognitive confusion,facial pain, weakness....there are others as well, but don't want to bore you!  one of the things i have been having a lot of trouble with lately are my eyes...lots of wierd stuff going on with them.

since none of my local or current drs were willing to help me explore the possibility of cm being the beast behind my symptoms, i decided to seek help elsewhere.  my journey led me to a dr. at john hopkins in md.  that dr. ordered a cine brain and cervical mri and it was discovered that i had restricted csf flow in the back portion of my brain.  additional mris show that i have a small anular tear of the disc at l4/l5, mild cervical spondylosis with minimal anterior spur at c5, minimal scoliosis in the upper t spine with osteopenia and mild central compressions in lower t spine.

sounds confusing and like a lot, but when compared to many others on this site, i have it easy!  even though we are born with this thing, i, unlike so many others, did not have any real problems until i was involved in an accident in april of 2001.  and my aggressive chiari symptoms did not kick in heavy until late last year.  by this, i mean that old symptoms like vertigo were happening with more frequency and were longer in duration...and new symptoms reared their ugly heads.

so now i am searching for the dr. i am going to allow to cut open my skull and play with my brain!  lol!  i am going to the wisconsin chiari center on the 4th of nov. and would like to speak with one other surgeon before making my decision.  as many of the dr.s use different materials and procedures, i would like to have a variety of choices.  on a personal level, i would like to be made to feel at ease with the dr. i choose and confident in his abilities as a ns.

so there's the quick version!  lol!  i don't know if this is what you  are looking for or if it will help you in any way....but if you have any questions at all, feel free to contact me again here or you can also send me a personal message if you are more comfortable with that.  i would love to help you in any way i can!

elizabeth

[sarah357]

Hello to everyone in the Chiari Community! I was just diagnosed a few weeks ago. I had been sick for like 4 years and gone to so many specialists and doctors. I was treated well by some, and like I was crazy by others. I am upset about everything but glad to finally know what is wrong with me. I am frustrated because I won't be able to see my neurologist until next month. They said I will be able to speak with a neurosurgeon. I have no idea what my herniation is because I only spoke with my dr over the phone when he called me with my MRI results and everything else I have been researching online.
I have been struggling a lot because I've gotten depressed not being able to work; I get very bad symptoms. Once in a while I feel okay, but usually I have constant fatigue, neck pain and stiffness, headaches, and my body is sore all over for no reason. I also get dizzy, have vision problems, tingling and numbness in my hands, and nausea. I used to be able to work out and now I can't do anything and it's making me more depressed.  Are all these symptoms common?

[n40066]

hi sarah!

and welcome home!  all of your sympoms are things that everybody here experiences!  so i guess that means we're all crazy!  lol!  but seriously, everything you describe are chiari symptoms.  have you started your search for a chiari specialist yet?
elizabeth

[selmaS]

HI and welcome to the Chairi forum.

As Elizabeth said, many of ur symptoms r similar to what mosst of us chiarians also deal with.We do have a  Health page on symptoms and one on chiari in general......

There is a link to the chiari helath page in the welcome message at the top of the forum and there is an icon that links u to the menu of the Health Pages top right of this screen.

We also have a list of chiari specialists in the Health pages as well...this list is of drs that treated members here.

If there is nething we or I can do just let us know.....
and welcome to our little family.

"selma"

[sarah357]

Thanks to you and Elizabeth! I haven't found out about a Chiari specialist yet. I know there may be one at the University of Michigan but I will take a look at the health pages. My dr is at the University of Toledo and I don't believe that there are any specialists there. Thanks again :)

Sarah

[selmaS]

Hi sarah...depending on where exactly in Ohio u r...there is a chairi dr in Pittsburg, PA...Dr Bejjani.....u can check him out.

Not sure how far u want to travel to see a specialist...many of us do have to travel.

And please keep in mind our list of drs is not a complete list, only a list of specialists our members have been to and liked.So, we may be able to get some names for u to research...as u should do for ne specislist u select to go to.

"selma"

[n40066]

and dr. heffez at the wisconsin chiari center in milwaukee....

[irishred795]

I've been having horrible headaches and neck pain since May of 2009 that is just getting worse. I've also had vertigo, lightheadedness, vison goes black a couple times a week, tingling and pain in the neck and down arms to hands, etc. I saw a neurologist who ordered an MRI of my brain and cervical spine. MRI found cerebellar ectopia (not sure the size), cervical stenosis, cervical DDD, 2 bulging discs, narrowing of the neural foramina, and a syrinx. The neurologist would like me to go to a neurosurgeon. I live in the Toledo, Ohio area. The neurologist also suggested physical therapy for the DDD which I am putting off until I see the neurosurgeon. I'm taking 50 mg Ultram (tramadol) for pain. It's not helping much. I also have a history of migraines. Could anyone please suggest a good neurosurgeon in the area?

[irishred795]

I forgot to mention that my cervical spine is also not curving anymore. The doctor called is loss of lordosis.

[selmaS]

Hi and welcome to the Chiari forum.

Loss of the natural curve of the cervical lordosis can result from whiplash and can be positional.
I would suggest u get copies of ur MRI's and the reports so u have them for an appointment with a NS.....we have a list of specialists here, please research them to find a dr that is right for u......the list is compiled from the members here that they have used and liked.
It is also important to see a orthopedist for the DDD and spinal stinosis and bulging disks as they can cause many of the same symptoms as chiari.

Also be advised u may have to travel to get to a specialist....I know there is a dr in Ohio, and his name is on the list.

Glad to welcome u to our little family here, sorry for the reason u had to seek us out.

"selma"

[hoggsandkisses]

About a year ago I went through many rounds of cervical and brain MRIs. After a bad car accident I was having major headaches and numbness of my face and pain through out my back. The doctors told me that I had Chiari Malformation 1  and that all my pain was being caused from that! I'm trying my hardest to live a normal life and work as long as I can.  I don't want to get depressed or feel sorry for myself, but my pain is mostly set off by my normal everyday acts and work is almost impossible. I don't want to tell everyone about my Chiari, because one nobody really understands what it is and two because I don't want them to think i'm lazy or punish me! How do I let my employee know about Chiari and my pain without freaking him out or being fired??? Any ideas PLEASE!!!

[irishred795]

Thanks so much for the info. I did find a doctor in Cleveland thanks to this website. I'm going to call my insurance and see if they will cover him. I also heard of a doctor a few minutes away that is co-editor of AANS and the alternate Ohio delegate to the AMA. If my insurance won't cover the doctor in Cleveland, I'll call his office about an appointment and ask him what level of experience he has with syringomyelia.My neurologist seems to think I will definitely need surgery, from the information I've gathered it's not always advised.

[selmaS]

For a syrinx (syringomyelia) it has to be a certain size b4 they can do surgery....chiari is a different topic when it comes to surgery.

I hope the dr u r going to has the experience needed to help u or knows of a dr that is and can referr u.

Good luck and do keep us posted.

"selma"

[selmaS]

Hi and welcome to the Chiari forum.

After getting a dx u need to get testing to rule out related conditions like syringomyelia, tethered cord, PTC, Ehlers-Danlos......DDD....spinal stinosis.....

Once u know which conditions u have it is easier to know which may be causing which symptoms and the best way to start treatment.

I hope u find the info and support u r looking for.

"selma"

[debni]

Hi I'm from Northern Ireland 32yr old woman i am 8 wks post surgery and so disappointed and scared!!  Hav had a lot of the symptoms others have spoke about like cant find the words, headaches ,neck pain and being  sick.  All of which i thought had nothing to do with the Chairi especially the not being able to talk or that these symptoms would have settled by now.  I pushed for surgery as I simply thought as soon as i had it I would be fine again!!  That i no longer would have it. I'v saw remarks not to go on rollercoasters or play contact sports.  Will I never have a normal life again?  Will I always have Chairi Malformation and will it get worse?

[selmaS]

Hi....I am so sorry u were not educated more on chiari prior to ur surgery, but we r told by Chiari specialists there is no cure, only treatment.And depending on whether or not u had nerve damage will depend on how u feel after surgery and it can take up to at least a year to see benefits of this surgery.

It is also a great idea to rule out related conditions that can still be causing some of ur issues...like a syrinx or tethered cord.....PTC......there r quite a few issues u could have going on including a bulging disk.

I actually felt better at 8 weeks post op than I do now, but I do have other issues causing my issues.So, I suggest u see ur dr and get looked at for some of these other issues to see why u r feeling like this.....but do look at what u r doing....if u r doing too much, it could be u just need to slow down and let urself heal.

One last question is did u have a posterior fossa decompression with a lamectomy (sp?) where they shave off some of the disks at C1 and C2....and a patch over the dura...and if so, what type of patch did u get?......sometimes the patch itself can cause issues ...1- bcuz u can develop a CSF leak 2- u can reject the patch...and lastly do u know if u had ne infections right after surgery?

I pray u get answers do u can feel better....and I am so glad u joined our little family here....we can share our experiences and offer support.

"selma"

[debni]

Thank you Selma for replying to me.  I did not get a patch he left it open.  I dont understand some of your abbreviations sorry what is PTC and (sp?)  I was under the illusion that once I got operation I would be "normal" again and that would be the end of it...

Do you know if you can play contact sports? I seen you had informed someone else that they shouldnt go to a chriopractor.  I alao read on this forum to avoid rollercoasters as well.  As  you probably can see I really know very little!  Very frustrated as simply none of my family or friends understands how i feel. I cant just let myself go and enjoy myself and laugh til i cant breath thats who i use to be thats who i thought i would be again in 2010!!  The first few weeks after surgery i was delighted as i felt so good but slowy but surely i feel just like i did before the op!  

[selmaS]

Sorry I keep forgetting the newer people r not up on the abbreviations.....PTC is pusedo tumor cerebri  and I am not sure if I got the spelling correct and that is what the (sp?) means...spelling?.....lol...sorry again......

We do have a Health Page with a list of abbreviations used...so that may help u understand some of the threads here :

Not being a dr I can not tell someone what they can or can not...only share what I was told or learned from reading up on this and related conditions.....most chairi specialists will advise no roller coasters (which makes me sad as I love them) and no contact sports........

Since u r having the same issues as prior to surgery I can only suggest u call ur dr asap to see what is going on....have u had ur post  op visit yet?

"selma"

[debni]

No have not had any post op appointments yet. Going to ring first thing in the morning thak you for your help!

[rod44]

Hi Debni,I have a congenital malformation of my cervical/thoracic spine that has caused the Chiari herniation, I have the symptoms you describe and have found that getting a proper diagnoses & treatment is extremely frustrating, it is hard to get information here about this condition...
Because of the lack of NS in this country (10 in the republic and 14 in the north) and the fact that CM is uncommon it is difficult to get one who has good experience of Chiari.
As selma said you will need to know if there are any other issues such as a syrinx going on, to do this you would need a full spinal MRI scan.

Ray

[Jesselyn08]

Hi, my name is Jessica (I'm 19 years old.) I noticed that you all seem to know some stuff about this malformation. I have ACM type 1 ... 7mm and I am experiencing severe neck pain, and I get a pulling sensation that goes down my spine. I'm in a great deal of pain that I have been going through for several years now. I go to my neurologist tomarrow for my first check up since they found out that in the last year it went from 3mm to 7mm, So I'm hoping to get some relief. Could you tell me some treatment options other than surgery? I put ice packs on my neck several times a day, I take Ultrum 50mg (which doesn't seem to be working anymore) The only thing that seems to take my neck and back pain away is PAIN medicine, and I really don't want to be on such hardcore medincine at my age. I've tried a Chiropractor (which made it worse) I've been to a Physical Therapist which also didn't help, I'm running out of options and I really need some help. Thanks a bunch.

[shanmomof3]

Hi Jessica and welcome to the chiari forum! Please dont go back to a chiropractor! As you found out they can make things worse. You said you use ice ... have you tried using heat? We are all different what works for one doesn't always work for the next person. Personally i like heat better than ice. Also, its important that you have a chiari specialist and not just any neurologist or neurosurgeon. Good luck with your appt! Shannon

[selmaS]

Hi, I wanted to wish u luck on ur appointment...and I must agree with Shannon, heat works better for me too...as the ice makes me tense up and tightening the muscles is the opposite u want u need to relax them.

AND a chiropractor is one to stay away from ....no neck manipulations.....not good at all for chiari.

And last but not least and the most important is u need a true chair i specialist not just a NS that does chiari surgery or has done a few....one that this is the only thing they do.....

I hope u post an update on ur dr visit today : )

"selma"

[Dianne58]

OMG!  I can't believe there are others who have the exact same symptoms.  Been on disability since Oct. 2009.  In and out of ER with horrific migraines, neck pain, vertigo, throwing up, hands and feet hurt, but mostly when I stand up, severe piercing head pain which radiates into my eyes and gives me "cracked" vision so that I cannot see to read or function at work.  I used to apply millions of dollar checks into computerized ledgers and now I cannot add 22 and 17!  Memory is gone!  PCP had treated me like I'm a psych patient until I started yelling at him and had my therapist call him to tell him that symptoms were not "all in my head".  I live in Connecticut, and have been sent to caridologist and neurologist at Massachusetts General in Boston, with no results.  They do not see any abnormal on my MRIs or CT scans.  Because I'm tired of living in pain, I do research on the computer and ask my doctor about different causes.....they get angry with me and very put off.  Do I mention chiari to them now?  I'm convinced this is what is wrong.  I have spina bifida occulta which I've forgotten to tell the doctors (diagnosed in my early 20s and now I'm 52).  This is how I found the chiari symptoms, by looking up spina bifida occulta.  I need help as I cannot exert myself at all without causing severe migraine and running to ER.  Vacuuming or bending over, or standing for long periods of time is and has always been impossible my whole life!  I have a bulge in the right side of my neck that is painful but no doctor sees anything.  I have ALL the chiari symptoms.  How do I get a doctor to test for chiari?  Especially when my MRI results show northing?  Do doctors have to specifically LOOK for tethered cord or syrinx or CSF blockage in an MRI or CT scan?  Could they have missed this?  Please help!

[selmaS]

Hi and welcome to the Chiari forum.

To try and answer ur questions...yes, the drs do have to look for TC, syringomyelia and even chiari plus CSF blockages.There r specific MRI's for each w/wo contrast and for the CSF blockage a BP clip is also used to see if the flow moves with the heart beats.

Haven't ur drs ever done a Brain or cervical spine MRI? Were u ever involved in a MVA or a fall?.....Have u tried going to a Neurologist =NL for testing...most will rule out Lupus, lymes, MS and several other conditions with similar symptoms.....that is how my chiari was found.I am not sure what type of dr u have been to.

Plus, if chiari, a syrinx or tethered cord is found u need a Neurosurgeon = NS that specializes in these conditions. I know there is one in Boston.Keep in mind that many with chiari are prone to autoimmune disorders so stinosis and DDD can also cause issue for u.

I am happy to welcome u, sorry for the reason u r seeking us out....especiscally since u r not dx'd....but glad to have u as part of our family here.

"selma"

[*Stormy*]

HI

Just wanted to let you know that my NL was a lost cause and also tried to say my symptoms were in my head...it was until I found a NS that he saw my problem and diagnosed it. I know that it is a lot harder than it sounds but if you can get a NS to look at your scans it would be well worth it. I was told my MRI scans were normal and they weren't!! My NL just chose to ignore my CM as incidental. With all your headaches it should interest a NS enough to at least look.

Good luck!
Carolyn

[srichardson22]

My 2 y/o son has screamed off and on and had "fits" since he was a newborn.  He throws his head back, bangs it on the wall, holds his head in his hands, and will NOT look up for nothing!! We were first told he was colicky at 3 mos old, then that he would be a difficult child at 6 mos. old.  After much pressing, he was diagnosed as a very young migraine patient at 18 mos. I still wasn't fully satisfied. He has developmental delays, especially speech which we've had fully evaluated. At 21 mos. he became symptomatic of hypoglycemia - blood work revealed idiopathic IGF-1 deficiency and now growth hormone shots are helping. (He is of normal height.)

When I mentioned that he has excruciating headaches, the endo doc decided to order an MRI.  We were shocked to find he has 15 mm Chiari I malformation.  The NL who diagnosed his migraines initially said this is very serious and will need to be fixed, but he wanted to see the actual films.  We took those to him (drove 6 hours round trip) for him to say "don't worry about it". His symptoms are not associated with the Chiari - he now has Cluster Headaches, not migraines. Most importantly he is not gagging on his food, so no surgery is warranted at this time.  They now prescribed Indomethacin, which worries me.

So anyway, if we don't treat this and just watch it, is it going to get worse? I've read so many varying stories. I truly feel like our next step HAS to be to find a pediatric chiari specialist.  I just want my poor guy to feel better.
Thanks for any input!
~Stephanie

[shanmomof3]

Hi Stephanie! That poor baby!! You absolutely need a pediactric chiari specialist! Gagging on his food is NOT the deciding factor! I'm SO sorry your having to watch your child suffer but i believe if you find a true specialist they will be able to help your sweet little man. Oh, welcome to the forum! I'm sure you will be able to find answers and more importantly support here! Shannon

[lesamptyme]

In a couple of weeks I will be taking my loved one to the Cleveland Clinic to meet with Dr. Di about her Chiari issues (diagnosed with MS for 10 years).....any thoughts or experiences with him and the Cleveland Clinic would be greatly appreciated.....thanks!

[selmaS]

Hi and welcome to the chiari forum.

I have to agree with Shannon...since ur child is having swallowing issues which can be associated to chiari I would want to be seen by a pediatric chiari specialist not just a NL or NS.....it is all to important...and keep an eye on his sleeping patterns as sleep apnea is also closely associated with chiari.

Glad to have u as part of our little family here, sorry the reason u had to seek us out.

"selma"

[jenn077]

Hello everyone
I am a 20 y/o female. I have been recently told that I have a Chiari 1 malformation.  Since I got my results, i have no been able to get in to speak with my neurologist, so I dont really have a lot of information. All i have so far is what I can gather from the internet and these pots. I am very scared! for the past few months I have been having horrible pain/pressure in my ears/jaw/face and non stop pressure under my chin and in my throat.  The Chiari was found by accident while trying to figure out all of these problems. Do these symptoms soundl ike they would be coming from the Chiari?    Also, I am a atv/dirtbike racer. I am afraid that this disease may put a stop to my racing... does anyone know.. do physical activities affect the Chiari?  Am i thinking too far ahead?  I would really appreciate someone giving me answers if you have any.  I am waiting to see the neuro but i really dont like waiting! especially now!
Thanks to anyone who responds!

Jenn

[selmaS]

Hi and welcome to the Chiari forum.

The symptoms u listed do sound chiari related....and could be due to the activities u r into....the bike u ride is it one with low handle bars u lean down to....that could put preassure on ur neck and shoulders  and also jar it when going over bumps...

The symptoms u list do not sound like u r having very severe symptoms, but u deff want to get a complete eval....the NL should get an MRI to look to see if u may have a CSF blockage or overcrowding....those along with symptoms r what the drs use to determine the severity of ur chiari not the size of teh herniation...so if ur dr says ur chiari is mild bcuz it is  only such and such mm long....find a true chiari specialist to get an assessment.

I hope u stick around and join the forum...it is a really good place for info and support!!...sorry the reason u had to seek us out.

"selma"

[Niki2004]

I had severe headaches and dizziness for as long as I can remember, always having the feeling that somthing was "wrong" with my head, I was diagnosed with anxiety, told I neded glasses, I was even told that I was a hypocondriac, I myself started to believe I was crazy! No one understood what I was going threw. I was diagnosed with Chiari 1 when I became pregnant at 16, the weight of carrying my son amplified my symptoms and my limbs would go numb, I was told I had significant pressure on my brain. I had the chiari decompression surgery when I was 17 years old. After many complications an 3 surgeries later, my symptoms seemed alot better. 5 years later they seem to be coming back slowly. Has anyone experienced this before? I know I was told that the hernia can grow larger...

Another question... My son who is 5 began to complain of headaches, he to was diagnosed with chiari, will all my children be born with this? I am so concerned, I know what he will have to go threw, headaches, dizziness, numbness, I don't want to bring another child into this world to go threw the same things.... Any advice would be greatful...Thanks

[Niki2004]

It is such a relief to read some of these stories, the diagnosis is awful, and it is something pretty hard to live with if your symptoms are like mine, but to know there are actualy people out there that will not think im crazy or making these things up in my head!!!

[selmaS]

Hi and welcome to the chiari forum...

I am so sorry u and one of ur children have this condition...it does not mean all will or that they will even pass it on.I have 3 sister's and none have had teh symptoms I have nor has my only daughter.

I pray that ur other children have been passed over and will not be affected...and that u and ur DS will get the support and treatment to help u live ur lives to the fullest.

"selma"

[Teresa62]

To everyone,
My 11 year-old son was just diagnosed with Chiari malformation I @ 7 mm... of course this was quite a shock and I have spent hours researching the condition.  My son's symptoms started with sever stomach pain, dizziness and car sickness.  He ended up in a pediatric gastro office and had an endoscopy that showed stomach inflamation (inflammation) and ulcers... blood work showed that he had food allergies to soy, wheat, corn and he's lactose intollerent (we already knew he had life threatening allergies to peanuts and tree nuts) - according to the gastro dr. all of this inflamed the gut and led to ulcers but no one could ever explain why my son was was dizzy until I demanded a referal to an ENT and he ordered an MRI...  We just got those results and discovered Chiari -- I have read a few articles - one by leading NS at TCI regarding a link between the gut and the brain... just wondering if anyone else has dealt with food allergies and Chiari and what came first - the allergy or the malformation???

[selmaS]

HI...I have not had food allergies, but have had a lot of issues with IBS and acid reflux....so I do have foods that trigger the reflux and some that can trigger the IBS...I have learned which items to avoid.

If these r allergies, I was never told that by ne dr I saw.....

"selma"

[lilmiss1999]

I really need to share and hopefully come out of this knowing I am on the right track and not crazy. I have been so frustrated for so long. I have been suffering from extreme headaches (or rather head pain) for a year while doctor after doctor has tried to diagnose me with chronic migraines. They are not! Light and sound do not make me nauseous even though my eyes are sensitive to light all the time. My headaches feel like a pressure cooker is about to explode through the front of my head (occasionally in the back). The pain and pressure becomes unbearable most times and I have made a few trips to the ER. These episodes last for weeks and I only get a few days to a week off in between. In the last month I had 4 days with no pain. I can only take pain meds twice a week for fear of rebound headaches so I suffer threw the rest. I am going to go crazy if I continue this way. Along with the headaches I have tremors in my hands. Visual disturbances including flashes of lights, Horrible dizzy spells where I have to brace myself or feel like I am going to fall and then I am fine (only lasts a couple seconds), my eyes twitch up and down, numbness in my arms and legs, memory problems are really bad and without spell-check you would not be able to even read this.   I went to a Neuro and had blood work, CT, MRI of head and neck (she found I had hyperreflexia of arms and legs and suspected that I may have had a herniated disc in neck) according to her all is fine and I am NORMAL!!! WHAT??? This is not normal. I am awaiting an appointment for a second opinion and have done more research on my symptoms than I could keep track of. I found a few forums like this and for once I do not feel alone. I did look at my MRI and I have a ton of questions. I am not sure how I feel about self diagnosing, but my current doctor mentioned nothing about this and looking at my MRI and researching how Chiari is measured, I am sure interested to see if Neuro #2 will say anything. If not I know I will ask. Do any of my symptoms sound like I should push my doctors to look into this? Any help or encouragement would be great. Thank you to everyone. Good luck to you too!!

[selmaS]

Hi and welcome to the Chiari forum.

Many of us have gone thru the same thing....drs not giving all the info and or not recognizing chiari.
If u have a copy of ur MRI, do u also have a copy of the report?

There r several  Chiari specialists that will review ur films for a nominal fee.

A NS that is not a specialist may not think u need treatment if they do not feel it falls under the older classification for chiari which was a herniation of 5mm or longer...But the size of herniation is not the determining factor...u want to see if u have a CSF blockage and overcrowding.....and symptoms r now how the specialists determine surgical candidates.

Hang in there and do try to locate a chiari specialist...we do have a list here, it is compiled from members and drs they have seen and liked....please research the drs u consider seeing to be better able to find the dr  right for u.

We r happy to have u join our family here, so sorry foe the reason u had to seek us out.,

"selma"

[lilmiss1999]

I have been looking at the list of Chiari specialists that may be close to me. There is a lot of information on here and I am so glad I have found it!

I did look at the report and it states...

There is no signal abnormality, mass, or abnormal
enhancement within the brain, the brain stem, or cerebellum. There is
no edema. CSF spaces are normal. Calvarial and paranasal sinus
structures are normal. There are no vascular loops. There is no
abnormal vascular structure.

This is why I am so frustrated. Like I said before I do not like to diagnose myself but this is the first time I have not felt so utterly alone. My Symptoms are what drew me to this forum first!!!!  That is what will keep me looking no matter what my mri says. Researching how Chiari measurements are taken and looking at my own mri I am full of questions. I will post a picture of my mri on my profile so you can look if you want to. My list of symptoms increases with severity as the days pass. This is starting to change my life and who I am. My neuro looked at me during my last appt and told me I was medically unique because she could not not find anything wrong with me. I cried like a baby in her office. She has me on Topamax now hoping that it will help with the headaches but it only makes all the other issues worse. Now when I talk about my symptoms I have to classify them Pre and Post Topamax!

Anyhow...Thank you for listening.

Have a great day.
Jennifer

[lilmiss1999]

I also want to add that I am from a small town that has a bad rep when it comes to the medical field. Even going an hour or two north or south and mention being seen by a doctor in this town will get a very interesting response from some DRs. Through my insurance I have to start local and then be reffered out of area. That is going to be my next step. Even if Chiari is not it, This is not a NORMAL life. I need to figure out what is going on.

Jennifer

[selmaS]

HI Jennifer,

Like I may have mentioned b4, many of us have gone thru the same thing...after I was DX'd with chiari the first local NS said I did not have it, the next one almost 2 hrs away said u have it, but it is beyond me as to how to treat u...I then went to NYC to the TCI...and was happy with the drs up there...this is y our list is not a complete list, rather a list from the members of drs they liked so newbies can have a starting point to begin researching.

I will look at ur MRI's and unfortunately I am not a medical professional, but I can spot chiari  when it is  obvious...lol....

Did u read the poem at the top of the forum?...it is by Dr Oro and it helps to keep us from getting too discouraged to find a dr that understands this condition.

"selma"

[cilldd814]

I have been in so much pain.  Headaches, neck hurts, feels like I have an inner ear infection...but I don't.  My doctor's nurse informed me three days ago that I have chiari type 1.  With every question I asked her, I got an I don't know response.  Prednazone and.  Tylenol 3 really help.  Mine is 7 mm.   I see neurologist Monday.  So scared...

[*Stormy*]

Hello and welcome,

If you really want to get some answers, find a good Chiari specialist that is a neurosurgeon. We have a thread on here that lists a bunch of NS that members here have tried and liked, this should help you find a good one.

Any NL that i have ever seen, does not know very much about Chiari and what they do know in most cases, is simply not true. You will be doing yourself a big favor to get an opinion from a NS.

Good luck to you!
Carolyn

[selmaS]

Hi and welcome to the Chair forum.

As Carolyn mentioned we do have a thread to help get u started on the path to a true chiari specialist. I must strongly suggest that u research all drs.

Finding a true chiari specialist is the first key to getting the proper treatment.

May I ask what other symptoms u have besides the HA's..... and since the nurse had no idea, here is a list of test u need to have done to know exactly what is going on and if u may be a surgical candidate.

Brain MRI w/wo contrast, a MRI of the cervical, thoracic and lumbar spine, plus a CINE MRI to check CSF flow....and overcrowding. U will also find thru these tests if u have a syrinx, or tethered cord.

Blood work and other neuro testing should look for to rule out Ehlers-Danlos, IIH, thyroid issues...ect.....

"selma"

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

[rod44]

Hi and welcome, there is not much I can add to the advice that Carolyn and Selma have offered, for me getting a DX was some what of a relief, now at least you can move forward and work towards finding treatment.

Ray  

[cilldd814]

My mri results are saying I have chiari.  It also says I have a peculiar tortuous basiliar artery for which I need an mra.  My tonsils are 7mm.  The pain in my neck is excruciating, o n the right side of my head, above my ear I. Have pain,  feels like an inner ear infection but there's no infection.  Scalp hurts to touch and I'm starting to get burn sensations.  Prednazone and tyl 3 are my best fight right now.  I am looking for a NS, think I found one.  She's sposed to be best in OH

[cilldd814]

Wow.  That's a lot of testing.  I did have a thyroid issue a long time ago.  I was hypo.  Took meds for a year but then my thyroid got well and I didn't need the meds anymore.  I am generally very healthy.   I am blessed to not have suffered my whole life like many of the people I've read about.  It just started with headaches 3 weeks ago and now I'm trying to not let fear take over...thank you for being there and giving me the information I need to start this journey I know nothing about...

[*Stormy*]

Get your thyroid checked again...the same thing happened to me. My thyroid went downhill when I was preg with my 3rd, I took meds for about a year and then started to feel hyper so I went off. Was tested after that point and my TSH came out fine. Then a year later when I started to feel bad I was tested again and my TSH was way back up there again. Now I am on meds permanently.
Most likely you have Hashimotos, most of us hypo ppl do..it can be confirmed with a TPO antibody test. It is very common with Hashi's to be hypo and then the antibodies let off for a while and your thyroid will sputter to life and if you get a blood test during that time, it can come out with a normal TSH. If you have needed meds in the past for it, then you will need them again.

Ha ha..I feel like a broken record...I'm pretty sure I just gave someone else the same advice yesterday...
Google Hashimotos..and you will see what I mean.

Carolyn

[selmaS]

No worries...let us know ur questions and concerns and we will help the best we can.....may I ask who the dr is in OH...and do u know if they have  chiari as their primary focus?

Carolyn is right many chiarians, myself included have an autoimmune thyroid condition that can flex btwn being hyper and hypo...and many drs only check the TSH and u can get a false
"normal" result...the free T3 and free T4 along with the TPO antibodies and TSH to get the true reading.

"selma"

[cilldd814]

The first time my thyroid was tested, my tsh was 84.  I do get it checked every so often but will def have it checked again. The NS I was speaking of is Janet Bay in columbus OH.  I checked my insurance provider list today and found out that she's not on it.  Very frustrating. I am going to keep searching but I have to choose from the list of specialists they provide and do some research.  Do you know if its true that agent orange causes this birth defect? My dad was exposed before I was born but I have to do a lot of research to prove it.  According to the VA, spinan bifida (and family) is the only birth defect the govt recognizes as a birth defect directly caused by AO.  My dad died two years ago and my sister has been trying to prove he was exposed during project SHAD.  I know it doesn't matter all that much but it makes me feel better knowing where it may have come from...plus my younger brother gets headaches that are pretty bad...id like to make his journey a little easier if he gets tested.


Its so weird to be dx.  The only issues I've had all off my life were with my teeth. This just seems to have come from no where.  My 17 year old daughter has just been dx with fibromyalgea.  She has had an mri.  I'm going to have it checked agaiin. My son has adhd but his dad is add so I think he inherited it from his dad.  My mind is every where... going to the NL. Tomorrow.  I don't know if he's even going to be able to give me answers or blow it off but I will let you know what he says.  I don't think he's going to let me stay on the predazone and that scares me too.  Its been completely taken that pressure and a lot of the pain away...

Cill

[selmaS]

Good luck at the drs tomorrow : )

There r many theories and much research going on as to how chiarians get this condition...many feel it is genetic...so u should look into ur family, I have a cousin that was born with spina bifida.....

Let us know how ur dr visit goes :  )

"selma"

[denverluv]

Do you guys realize this thread has been going on for two years? I wonder if that is a record- the longest time for a thread to continue- it's so cool! :)

[cilldd814]

Ln says that although I may have chiari, he thinks my sysmptoms are stress related.  He pointed out that I've. Been healthy all of these years and only had this pain past 4 weeks.  He gave me shots that took the pain away.  I'm gonna see him again next Monday.  Hoping he's riight... thanks for helping me thru this week.

[cilldd814]

meant to say nl. Not ln...

[selmaS]

HI...I hope ur able to get continued relief with this option.

Good luck and I hope u continue to hang around and let us know how u r doing with this pain treatment.

"selma"

[cilldd814]

Thank you.  I will be keeping my cd with my mrii results.  My nl says that he does know about chiari and has sent people to the ns for the surgery.  I'm glad he knows something about this condition.  He spent an hour and a half explaining things to me. And going over my mri results. .. but i am cautiously optimistic.  I woke up with no pain today so I am grateful for that.  Again, this support group really helped me this week to get thru when my gp was so little help.

Cill

[selmaS]

I just wanted to say if we haven't mentioned it already is that chiari symptoms can cycle....so to keep the pain free cycle going be sure to avoid certain activities that may cause u to go into a pain flare up.

"selma"

[fatenabu1]

I have Chiari Type I and had surgery but my symptoms did return. Chiari Type I or any type has several symptoms that can manifest, sometimes triggered by traumatic events such as a fall, head injury etc. Sorry for big block of text below.

My current symptoms

Extreme Weakness in legs
Lack of Coordination (comes and goes)
Migraines
Dizziness
Balance Issues
Numb fingers
Paralysis in legs/fingers/hands (comes and goes)
Memory problems
Speech issues ( I can no longer vocalize what I want to say, even hard for me to find the right words to express my self and know how to pronounce them)
Insomnia (when not having Chronic Fatigue)
Chronic Fatigue (when not having Insomnia)
Neck Pain
Pain in legs
Scoliosis (I have two curves in my spine due to living with Chiari for first 25 years of life)
Mood Swings (Depression and others)
Muscle Spasms in arms/legs/back (was full body spasms under control with relaxers)
Vocal Cord Paralysis (appears to come and go new symptom for me--currently hear because I tried to stand and go to the bathroom like a moron and tumbled, didn't hit head or anything though)
Lack of Appetite
Sex Drive Extremes (always in the mood or never in the mood)--drives my wife crazy


I am not trying to scare you with the above list but mine started out as simple coordination issues and for whatever reason my symptoms progressed and then I had surgery they went way for a year and a half and then around this pass Easter they started to come back first with the migraines and now I have everything listed above. One thing my neurosurgeon did tell me that it wasn't just my cerebral tonsils that were enlarged but that whole part of my brain was way over sized, which may be why my symptoms returned because it isn't like they can shrink my cerebellum.


God Bless,

Dustin

[selmaS]

Hi Dustin...I just saw a post on HB that talked about a report on kids and music with larger cerebellums...did u play an instrument growing up?...just curious....

"selma"

[fatenabu1]

was never able to play an instrument. I did a lot of creative writing and art type things though

[selmaS]

Hmmm well, not sure about all that stuff and just saw the article and wondered...lol...I did play the violin, the guitar and the glockenspiel...
I am/was a florist for many yrs...and recently took up painting....I just wonder if there is ne credence to this info....

[*Stormy*]

That's interesting...b/c my NS was more concerned about the size of my cerebellum vs the herniation too..

I am 6 months post op and just very recently (in the past few days) have noticed that my left arm is starting to feel less coordinated and weaker...which was one of my first symptoms as well. Also, I am getting that hip stiffness and weakness in my gait that I previously had b4. I am hoping that it is just a temporary setback.

Did they see anything on your MRI when the symptoms started to come back? I just had my post op one on Tuesday and still waiting on the results.

Carolyn

[fatenabu1]

Hello,

My MRI looks fine, the doctors can't find anything visually wrong, which is quite frustrating because obviously there is something wrong. Since the doctors can't find anything though some people I know are acting like I am crazy or it is all in my head. I have an appointment with a new neurologist to prescribe something for my migraines and to do some detail scans of the speech part of my brain.  It is a bit frustrating for me because I went a good 15 months with no symptoms and they started back up again on the pass Easter.

First I had the migraines and coordination issues mostly in my left side. Then slowly my legs started to get weak where i would need a cane to stand up. Then after that I started to get random paralysis and/or pins and needles feelings in my legs. That is when I called my neurosurgeon and had a new MRI. We sent the new MRI to him (he lives an hour and a half away) and He said nothing surgically can be done. My coordination comes and goes in my hands. I also lose my sense of taste from time to time and lose the ability to feel things in my hands/fingers. I can still use them just can't feel what I am touching. My heat and cold judgment is screwy. I took a real hot bath and thought it was ice cold the other day.

I am not trying to discourage you Carolyn but it has been a rough few months. My doctor who did the surgery though did warn me about 20% of the time the surgery does not help or the positive effects of the surgery wear off from time to time. I have also read online post from other Chiarians who have had their symptoms return with no visible reason. The only research I can find is that it may be linked to the enlarged Cerebellum, and since it isn't proper size it doesn't work right and doesn't tell the body to do things correctly.  I have a list on this forum of all my current symptoms if you are interested in what I go through day to day :/

[fatenabu1]

adding another post to add this forum to my watch list, clicked wrong due being sort of out of it due to my muscle relaxer

[stephanie_C]

Where did you read the article about kids who play instruments and the size of their cerebellum? Any way you can send me a link? I'm quite curious. I the viola since 3rd grade! And then add in all the contact sports..... hmmmm....

[*Stormy*]

I can only imagine how frustrating that feels...I am sort of in that boat with all these symptoms that have never gone away but what keeps me going is the ones that have. It isn't fun living in fear that one day things will spiral downward again...but we don't have a lot of choice do we?

I have heard this story time and time again too and it's so scary that they can't figure out why this occurs. I mean, somewhere there has to be a reason but they just aren't finding it.

Have you tried to go for a second opinion? Sometimes what one NS dubs not surgical...another one will have a different view. There are so many things that I have found out that have been on my MRI and haven't been told to me (including the Chiari) that it's really hard to trust anyone anymore. So now I get copies of all the reports and pics (waiting on the recent ones) and if there is something listed there that I haven't been told about...then I'm going to ask about it.
I trust you get copies of all your MRI's too? If not, I would request some.

I did read through your symptoms and it's scary...b/c I live with a lot of those things too. For me, the worst was my gait...I was able to walk w/o a cane (most of it on pure will) but it was SO painful to even walk a few feet and it jarred my body every time I took a step. I couldn't even keep up to my 2 year old! Also I had a lot of balance issues. So far those things are still improved...but it does worry me that some day it will come back. Plus, the pain I deal with in my body on a daily basis...well no one wants that forever either.. Sorry, I just realized how gloomy this is. All said and done, if the surgery continues to halt my progression, even if I don't see anymore improvements...is a successful one for me. My fingers are crossed :)

Carolyn

[selmaS]

Hi...I was going to copy and paste it when I saw it...and I don't think I did...so give me some time to look....I belong to too many chiari groups online I can't remember...lol...
But I will  look : )

"selma"

[sallie122]

Hi my name is Araceli from California,
I was diagnosed with Chiari Malformation Type 1 with Syringomyelia on Oct 2005 due to a lot of the symptoms that you ladies mentioned. However, I had my surgery done on Dec.22,2009 and I'm still in recovering. I want to know if you had a shunt put in and how are you doing for the one that had the surgery done?

[selmaS]

HI Araceli and welcome to the Chiari forum.

U posted on an older thread, and u can start a new one, but shane had his surgery 2 yrs ago and is having issues still....I had mine a yr ago in May and I am better, but still have some related issues.

It can take up to 2 yrs to heal, so u r only 6 months out...hang in there....u will get symptoms as u heal...that seems to be a part of the healing process....just remember not to do too much and relax.Allow urself to heal.

"selma"

[nicole124]

Hello all! okay I have been diagnosed with Chiari 1 as well. I am very confused and scared. My neurologist is sending me for all of these test and it really scares me. I am 37 and since my mid 20's I have had anxiety,depression,vertigo,dizziness,concentration problems,pain in neck and weird types of headaches, I also have this nervous trembling feeling all the time. I don't know if this is all caused from Chiari or not but I am trying to find out.
Sometimes I feel like a hypochondriac but I just know what I am feeling and don't understand it. So if you guys can give me some words of wisdom so I don't feel so crazy or alone on this it would be great.

thank you,
scared and confused nicole124

[DechenDolkar]

I know exactly how you feel! I too just found out a few months ago. I am 37 also and have dealt with severe anxiety for most of my life and I truely believe it is because of the chiari. I have had headaches, migraines, dizziness, neck and shoulder pain (to name a few) since my early 20's. Believe me you are not a hypocondriac, I had myself believing that for awhile too, but this is real. It is good that they are doing a lot of testing so you can find out exactly what is going on. One main thing you need to do is find a Chiari specialst. I know that you are scared, I am too, but there is also some relief in knowing after all these years what the cause of our misery is from. Please know you are not alone. I am still in the early process as well, but there are many poeple on this forum who can give you good advice. Keep us posted and ask about any questions you have. I wish you the best!

[rod44]

Hi Nicole, Welcome to our family :)

As DechenDolkar suggested it is important, probably the most important thing you need to do is to find a NS with Chiari experience. It is important to check for related conditions and to check for CSF obstruction. For this you will need a full spinal MRI & a CINI MRI.

I understand your fears, everyone here experiences this, we are all here to support each other so ask any questions, blow off a bit of steam if you need to, we are here for you :)


Ray    

[selmaS]

Hi and welcome to the chiari forum!

We all can relate to ur symptoms and the feelings like u r a hypochondriac...but trust me many of the symptoms u mention all all I have had too!!

The key here is to find a NL and NS that know and understand chiari....too many do not.
U want a true chiari specialist to treat u.

We do have a thread with drs names on it, use this list as a starting point to research drs b4 u go to one...this can help u find the right dr 4 u.

Let us know what tests u have had done already.There r several tests and conditions ur drs should be doing and looking for.

We r happy to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"

[*Stormy*]

HI Aracelli

I just wanted to reach out to you b/c I had my surgery on Dec. 29th. 2010...so only a week after you!!

I am still dealing with a lot of issues as well post op so if you ever want to compare feel free to PM me!!

Carolyn

[*Stormy*]

Hello and welcome

I just wanted to confirm once again that everything you have been going through is very, very real!!! I had all you listed above..terrible anxiety for years since I was about 15..or maybe even earlier.

The trembling thing you mention I have constantly...I never stop buzzing and b/c I have a lot of muscular problems I think it is tremors from constantly putting my weak muscles under stress. I say this b/c after doing a lot that day and I lie down...my body just goes nuts...they actually picked up the tremulousness on an EMG but apparently didn't think it was worth mentioning.

Which brings me to my next point...almost all of us have been made to feel like we were hypochondriacs at some point!! For me the experience was awful...my symptoms spiraled quickly downhill and everyone keep telling me it was stress (b/c I had a history of anxiety). When my gait became affected they did start to pay me a little attention until the tests started to come out normal (the chiari was missed or ignored on my MRI). It wasn't till I found a good NS that the truth came to light.... In the meantime, when everything was coming out fine...I really thought I was crazy...I would spend time walking down the hallway, willing myself to walk normally. Of course, it didn't help...but the experience with dr's did really scar me and I have had a really hard time getting over it.

I am so glad that you have got a diagnosis so that you can push all that aside and focus on dealing with your symptoms!!

Take care
Carolyn

[mrstroj]

As I can see over and over again in all of these posts, I am SO thankful I found this site!  I have suffered through 22 years of "normal migraines" without needing any migraine medications.  I learned my triggers, biofeedback, and ways to deal with the pain.  In 2005 my "normal" migraines began to change.  Since I don't often go to the doctor, the changes in my headaches caused me to look for help.  I did see a Neurologist and was diagnosed with rebound headaches.  More and more symptoms began to appear that I chaulked up to just getting older and joked about pre-mature Alzheimer's.  The back of my skull feels like there is a huge water balloon there and my scalp is always tingling.  All of my headaches are 100% different from the "normal".  In April 2010 I had one of the worst headaches I have ever had.  The next day the headache was gone but the left side of my face was drooping.  People at work finally talked me into going to the ER.  Stroke was ruled out and I was diagnosed with a complex migraine.  I was sent out to another neurologist.  

I had an MRI done w/wo contrast and there were no abnormalities except for low lying cereberal tonsils 3 mm.  I started researching this diagnosis (since I got the results before my next appointment) and hate to admit that I was so excited to find that what I had was real.  I also have to admit that I was relieved to know that it is also only 3 mm. When I went back to the neurologist for the reading of the results he stated that I was there for a numb face and I was fine.  I brought up the tonsils and he just threw his hands to the side and said, "Oh that?  That is nothing, you are fine.  You've had that since birth."  That was it. Gave me Depakote, which is doing nothing but making me gain weight.  That will be his next diagnosis I am sure, I have headaches because I put on weight....

After reading more and more posts on this site, along with my symptoms getting worse and worse quicker and quicker, I have changed my neurologist and have an appointment in the beginning of August.  I am happy only for the fact that the appointment is for an hour.  

I see that a lot of people have numb tongues and numb extremities, which I too experience, but I haven't seen anybody mention facial paralysis.  It is not constant, but I have discovered that if I hold my head in any position other than straight ahead for any length of time, my left eye and left mouth will begin to droop.  Every morning I wake up with left face heaviness.

I just don't understand how 3mm can flare up and down to make my symptoms come and go.  I am really hoping that my new doctor will be able to shed some light.  Of course, I was excited when I got my diagnosis from the MRI and was going to see the other doctor....

Thank you to all for staying true to this site.  It was an honor for me to find it!

[selmaS]

Hi and welcome to the Chiari forum.

Many have had this facial issues...and I know we have discussed them,...it is not always easy to locate older threads looking for a specific  topic that may not have been in teh title of the thread.

I had this issue in fact had it while at the NS office and the nurse asked me about numbness and I said I had facial numbness along with hand and leg...she said she knew bcuz my face was drooping.....many others only notice the drooping at their eyes......


It is not the 3mm herniation that causes ur issues, but most likely u have a CSF blockage and overcrowding....this is the info that NS that do not specialize in chiari do not know...while in med school they get 5 mins of an outdated intro on chiari and it is forgotten until they see someone with it and consider it an incidental finding......

U will need a CINE MRI to see if ur CSF is blocked.

We r happy to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"

[cactusgranny]

Your 5-yr-old son may well be blind in his left eye yet complain of double vision.  I too am blind in my left eye and often have triple vision in my right eye alone.  It usually happens when I'm tired, have been reading, watching TV or on computer for several hours.  I also have astigmatism in my right eye lens, but don't know if that has anything has to do with it.

[ateeq4b9]

plz hep me

[selmaS]

I did reply to ur post.

Know u r not alone : )

"selma"

[keishad]

Hello.. I am so stressed out b/c my mom just found out she had chiari and it is very bad. Every specialist that she has seen has strongly recommended surgery.. She go for surgery on oct4th. Does anybody know the outcome and risk of this surgery and how long does it take to recover from this surgery ?

[rod44]

It is important to understand that surgery is not a cure. The purpose of surgery is to help improve symptoms & quality of life. Like most invasive surgery there are risks with general anesthetic however the NS would not proceed on less they were satisfied everything was ok.
Recovery in hospital is usually a few days including time in ICU. After discharge from hospital it can take any thing from a few weeks to many months to recover. It is important to take things easy and rest
The most important decision your Mom needs to make is researching her Neurosurgeon, ask how many CM surgery's he/she dose. Many NS dont know enough about CM and this is reflected by the number of failed surgery's.  
Has your Mom had a full Spinal MRI & CINE MRI done?


Ray

[mama2kaity]

Hi everyone,
My daughter had a MRI done with contrast back in May of this year.
She had one done on her spine and brain, after her dx of Infantile Scoliosis.  Her spinal MRI came back normal, no tether or congenital problems noted. Her brain MRI came back with a small Chiari 1 malformation.  Of course we were afraid and upset.  She was only 10 months old when we were told about the Scoliosis and Chiari.
She see's the cheif Neurosurgen at Detroit Childrens Hospital. (we live in MI)  He read the MRI, spine and brain, re-afirmed that there was no tether ect.  and said her Chiari appeared to be small and that surgery wasn't needed at this time.  She has no symptoms that we can tell.
But she's only 16months, and can't tell us either.  But appears fine.
She see's him for check-ups every 3 months, we again on December 15th.
Should we be doing more for our daughter? She seems symptom free.
She wears a Mehta Cast for her scoliosis, and has been responding to that well.  She gets her 2nd one put on in November.
Should we seek a Chiari Dr. instead??  We like the NS we see now, and trust him.  I will be asking him when he'll be doing another MRI.
any thoughts?
Rachel - Kaity's mama

[selmaS]

HI Rachel.....

If ur DD is progressing according to her age, and is not in distress, or have a CSF blockage, then the idea to continue to eval with MRI's sounds like a good plan.
Unless she begins to demonstrate she is in pain....or shows that she is having symptoms....like issues with eating, bowel or bladder....these may not be the first noticed, but might be the easiest...out side of not sleeping thru the night...being more tired.

Sleep apnea is something with her age that should deff be checked.

U deff need a good NL as well as a NS.....and I would deff begin looking for a pediatric chiari dr for if or when u may need one.
I was born with this and it wasn't until I was much older that I would have needed to have surgical intervention...I would go as long as u can safely  go b4 u consider surgery.

I hope u continue to share u and ur DD's chiari journey with us.
"selma"

[Jamie8306]

My name is Jamie and I am the mother of a four year old little boy. He has Chiari One Malformation and things having begun to only get worse over the last six months. It seems to me that the back of his head is swollen and he is throwing terrible tantrums. We were sent to the behavioral clinic however they tell me he has anxiety. I am very frustrated because I am trying to figure out why I cannot potty train him, why he is having terrible tantrums, he has now begun to drool a lot, and when he gets dressed everything is backwards. He does not function at the same rate a most four year olds. We go see Neurology tomorrow does anyone have a child that has had the surgery? If so was it helpful or would you not recommend it? Please I need someone's input. I feel like I am fighting this alone.

[selmaS]

Hi and welcome to the Chiari forum.

I do not have a child with this, but I did have surgery...I do know, it does affect us all cognitively, and our moods...and I know some chiarians do have issues with drooling...I did have some pre surgery...none post op.

What u need to find out is does ur child have overcrowding and a  CSF blockage...has a syrinx begun to form already?This should be more a reason to look at more so than his behavior as to whether to do surgery or not.....

I hope ur NL is well informed on chiari and has options for u and ur DS...please post an update.

"selma"

[Jamie8306]

SelmaS,

              Thank you for your response I will be asking those questions tomorrow. I do not believe he has anxiety. I am very angry right now because I have some family and friends that believe I should just leave him be because they do not believe there is anything wrong besides my son being high strong. I really dislike when others try and step in with no knowledge of the issues at hand. That is why I set search for a place just like this. I also have all the symptoms of Chiari but have not been diagnosed or even to a doctor too be diagnosed due to the fact I am trying to figure out what to do with my son.

     Troy was born August 8th, 2006 a beautiful little 8 pound 5 ounce 21 1/2 inches long. However, I had noticed something did not look right with his eyes and he could not focus. Then his little legs turned in almost like he had CP. I continued to speak out to family and friends asking their advice seeing if they had noticed. Of course I got your just worried stop worrying so much. Months started passing and milestones were not being met. I then turned to the doctor's and they kept telling me that every child is different and to give him time. So I did well when we started feeding Troy regular table food he began to choke at every meal and his eyes would roll up and to the right. At this point meal time was exhausting for me because I was always getting up to get him unchoked. At thirteen months old I had Troy and his older sister watching Cookie Monster on tv with swirling colors in the background. Alana which is my daughter had got up and came over to tell me there was something really wrong with Troy. Troy's eyes rolled up into his head and to the right. I could not get Troy's eyes to come back down to focus. His eyes would come down and go right back up. I thought my son was having seizures so I rushed him to the nearest hospital for them to tell me that they had no clue. They called over to Children's and had us transferred and at that point we under went every test possible. After three days of no one knowing what the issue was the neurosurgeon walked into our room and drew a picture of a brain up on the board. She began to explain what Chiari One Malformation was and how this is what was affecting his eye movements. Since then it has been an up and down roller coster ride.

I will absolutely keep you posted on what happens and again I really appreciate your advice maybe with these questions I will get some answers.

[Jamie8306]

UPDATE.....

       I took Troy to his appointment today and was told that another MRI was needed to see if there had been any change with his malformation. However, I asked the doctor about the swelling in the back of Troy's head and he told me to take him back to his regular doctor because swelling has nothing to do with Chiari. I am really confused???? Anywho they have now directed us to the G.I. Specialist along, the Tempertantrum, Clinc, The Speech Clinic, the Swollow study team, the feeding team, the drool clinic, and he has to be fitted for a new helmet for his headbanging. Then I have to take him to a psychologist as well.... I am too my wits end.... I am seriously thinking about taking him to another specialist out of state but I will wait to see what the MRI comes back as. The doctor says that if it comes back abnormal then they will do surgery if not they will leave him be. I just do not get how the head swelling has nothing to do with Chiari because it is swollen where the malformation is. I need some advice please....

[n40066]

jamie....did you take troy to a chiari specialist?

[selmaS]

Hi...I am with Lizzy...many drs can tell u if u have chiari, but not enuff of them r experienced enuff to treat it or fully understand how if can affect us.....a true chiari specialist is more experienced on how it affects us and does a  lot of their own research.

There r chiari specialists that treat only children and some that only treat adults so keep that in mind when u r looking for a dr....

If I knew where u were located I might be able to offer more info, but do look at our specialist thread-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[Jamie8306]

I thought just by taking him too Children's Hospital Neurology dept. would give me some answers. I didn't know I need to find a specialist... I am located in Milwaukee, Wisconsin. So my question is does the back of the head swell when there is a fluid build up or a cyst? Thank you very much for the website I will begin to research my options.

[selmaS]

If it is chiari u deff want a specialist....

It is possible it is an abundance of CSF causing the swelling...until u get it looked at it is hard to say for sure.


Please keep us posted on ur DS's progress and urs on finding a dr.

"selma"

[reindeeru4u]

Diego.... A very excellent neurosurgeon in sd...Dr. Bulghari....have him check you out...good luck....
he's in the med ctr across from Sharp Memorial Hospital in kearny mesa...
good luck...

[terrieann914]

I have Chiari Type 1, I am 41, and  at night I am awakened sometimes by a burning hot feeling in my skull area, does anyone else do this? but otherwise I am healthy, no bad headaches, just I cant get words out like I want at times, Im active with weight lifting as well and I wonder if that is bad or good. I hate drs so I avoid it. I was seeing Dr Ovolie at Kirkland CLinc in bir Ala.

[selmaS]

  Hi and welcome to the Chiari forum.

Since u have been  dx'd with chiari u should get evaluated by a true chiari specialist to see what is going on, if u have a CSF blockage or overcrowding....not everyone will get the dreaded headaches.....but u do need to avoid some activities until u know for sure exactly how this is affecting u as straining with lifting can cause this to bcome worse......

I am not familiar with the dr u mentioned, but we do have a list of drs for u to research, they may not all be close to ur home...but a good chiari dr is worth traveling for.This list is also not meant as a referral.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

"selma"

[Mickey8228]

Hi,
Over the past month I have been experiencing certain symptoms so I began doing research.  I have always suffered from headaches and neck pain but was in an accident so I always contributed it to that.  Lately I have began getting dizzy, both hands going numb for no reason and Im having trouble forming sentances both written and speaking.  I have felt very foggy headed.  I do not have health insurance so Im not sure how I am going to be able to get dx or treated for anything, thats why I have been doing research myself.  I have always had very sloppy hand writing and trouble w/ hand and eye coordination.  Do these symptoms sound relivent to Chiari?

[selmaS]

  Hi I did reply to this post on another thread......

   "selma"

[margiea]

I'm really struggling with my chiari. Had 2
Brain op's last one 2months ago and still
In bed not seeming to make any progress.
Have a shunt in too. I miss being myself,
I miss my work. The medication has changed
My apprearence. I don't know who I am
Anymore and the tingling,pain and nausea
Is just getting to me.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u r struggling with ur recovery.may I ask for u to give a bit more detail on ur 2 surgeries?.....

Was ur shunt surgery ur more recent and a result of a post op issue with CSF?

  Several members have had this problem, not all have gotten a shunt.

   May we also ask who ur NS is, and what they feel is the reason u r having these issues?

  "selma"

[dlavender]

Hi Everyone, I'm new to this forum. But I too was told I have Chiari 1. That was 5 years ago. I've had headaches since my child bearing years.Most of the time the headaches would be so bad I couldn't function. But during that time I was a stay at home Mom with 4 children. My parents would come to help me when I was in pain. I'm now 58 years old and the symptons have become more and worse. The Dr that diagnosed my Chiair, didn't tell me I had a malformation, only told me I would never be able to have a spinal tap, because my brain extended beyond the skull. Never told me it was the cause of my headaches. Well by accident, or better yet by my best luck, I found out about Chiari when I started looking into the cause of my  [now worse] headaches. I've found that the things  I've always thought were my imagination or were related to going through the change of life, are possibly related to Chiari. My report of the MRI from 5 years ago states I have a 8.2mm projection of the right tonsil and the left mildly topic and sightly low.. I had a new MRI on 5/13/2011, now I'm waiting to hear about the results. I have most of the aches and pains mentioned here. This really affects my daily routine of life. I do work,and it's a very active job, I think what I do at work has a big effect on how I feel. I'm glad I found this site. And please tell me about Chiari specialist in the state of Georgia. THANKS

[selmaS]

Hi and welcome to the Chiari forum.

Not all of us have a chiari dr close to us so we may have to travel.We do have a list that is compiled of the members own drs.U do have to research all drs to find the one that is best for u.

  http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  "selma"

[lhall030]

I was diagnosed with a chiari 1 in july 2009.  It took 3 months of constant pain, partial parlysis, memory loss, disorientation and several doctors before any of them believed what was going on with me.  Over the last almost 2 yrs my symptoms are beginning to be ALOT worse when they hit. I am a single mother raising my children on my own so it is very hard to care for them when i am in so much pain i can't move at times. I did however find it very helpful to sit down with my kids and explain what was wrong with me to my children once it was explained to me by my doctors. I am now hoping to be able to go to the mayo clinic so to try to find other options for treatment. The doctors in my area aren't very familiar with the condition so they do not understand what medications do and do not work. They still have the mentality that you fill the person full of pain medication which does not work with this. I now just refuse the pain medication when they try to give it to me.  To many of them look at you like you are a dope head in there trying to get pain meds. Well i'm not. They can keep the pain meds just fix what is wrong.  I just wish people really understood what it is like to have this. Too many people have no idea what it is.
thanks,
lhall

[dlavender]

Hi Selma, Just returned from the Neurologist's visit, I felt like I didn"t know what I was talking about. The Dr. told me chiari 1 malformation was a  "normal variant", WHATS THAT! Was she saying that what I'm going through is normal?  I don't understand!!! The Dr gave me med's for headache and another med for the pain in my shoulders. With a back up med in
case one didn't work. Is it normal for the right side of the brain tonsil to extend down 8.2 c? Would someone please explain!! I'm here at my computer addressing you guys and my head hurts. Earlier in the week I chocked on a cookie and inhaled a piece of the cookie into my lung. I now have pneumonia. When I cough the pain is so severe I want to scream. But that may make the pain even greater. The DR want's another MRI this time, of my neck. I don't know what to think. So I'll get another MRI!!! I only want someone who understands what I'm going through.  Thanks for your help.

[selmaS]

  Hi, there r many drs that feel many people have a herniation from chiari and have no symptoms, I disagree, I feel many adapt to how they feel, do not complain about much of it as they feel it is normal...when u adapt and adjust to avoid pain, that is not asymptomaic.....ugh...some Drs just do not have a clue.

Do u have copies of ur MRI that shows ur chiari?

Is this the first cervical MRI?

Have u had a MRI of the thoracic and lumbar spine too?

Getting a true chiari specialist is what u will want to do next.

   "selma"

[dlavender]

Hi Selma, I've had 2 MRI's taken one 5 years ago(first findings) and another 2 weeks ago, there were no changes, But my symptoms are back and are worst.I do not have  actual images but a type written diagnosis. I'm having another MRI on Monday, June 6th this will be of my neck. Then followed by the spine, I'm not sure when this one will be done. I will be in touch with another Dr. I'm looking for a specialist. Thanks for your help!  

[selmaS]

  U can contact the facility that did the original MRI's and request copies on a CD....this will give the Dr u r currently seeing something to compare to. The report is just an opinion of a radiologist, not of a chiari dr...who for the most part do not read the reports, they like to view the films themselves.

  Good luck and do keep us posted

        "selma"

[tllinker]

My sister, who is 39 was diagnosed two weeks ago with Chiari 1.  She went to the Dr. because she had severe pain in her face.(left side).  Our mother has had to surgeries to kill the nerves in her face from the pain.  So when the pain started she wanted to see if she had the same thing.  She had the MRI and the Dr. came back with the surprising news of a 5 mm, Chirari malformation diagnosis.  We have all had migrains all our lives and she was no exception.  She has headaches all the time and they are getting worse.  She now has the pain in her face and tingling in her arm and hand(s).  Two weeks later she has had the third MRI and it has grown to 7 mm.  She has an appt. in Dallas with Dr. Richard Jackson.  Does anyone know anything about him?  He is the only one there they show specializes in Chiari.  This would be about a 5 hr drive.  They seem to be the closest.   Thanks for any help.

[selmaS]

Hi and welcome to the Chiari forum.

It is possible that other family members do have this condition as well....has neone else had a MRI?

As for it growing, it is also possible that the people reading the MRI's either r measuring from diff points, or the MRI's r of a diff slice and the herniation can appear to grow.....

I am not familiar with the Dr, but it is good to educate urself on chiari and see what the dr knows and suggests...that is one way to find a dr, outside of talking to others that went to the dr.The names of Drs on our list r from the members here, unfortunately not all the members that added names of their drs r still active.

Not everyone will find a true chiari specialist close to home, so she may need to travel....I did, and I know it is better to travel then settle for a Dr that just is not the best in this area of expertise.

There are diff org groups that will fly chiari patients to Dr visits as well as to surgeries...so do look at the Health Pages Link page for more info.

  Ur sister should be getting more testing- a CINE MRI to check for CSF obstruction, overcrowding, sleep apnea, a syrinx, ehlers-danlos, ICP....plus rule out other conditions with similar symptoms...like MS, LYMES,and LUPUS.

  Please keep us posted on her progress
      "selma"

[carol721]

my son was 2 yrs. old when doagnose with seizure disorder and chiari 1 malformaton 6mm. from mri test, he had another mri months later and the Dr. told me it much of closed up on it's own when I asked him about it.
Can that really happen? I don't want to wake up years down the line to fine my son stop breathing. Can anyone tell me the truth about that?
Carol

[selmaS]

  Hi and welcome to the Chiari forum.

I am not sure what u r asking, if ur son can out grow his chiari herniation...yes, this has been known to happen when it was not a true chiari malformation. This is the result of low lying tonsils as a result of  a trauma or hydrocephalus that pushes the tonsils out...however, if the other issue resolves, so can the tonsils especially in young children.

But, the comment "much of it closed up on it's own" does not make ne sense to me...u do not want this to close off as it would create a CSF obstruction. Find a Dr that is well experienced with pediatric chiari and have them test ur DS.

Having him tested for sleep apnea if this is also a concern should be done as this is an issue for those with chiari.

Always request copies of the MRI and the reports of all testing so u can easily go for another opinion.

   "selma"

[Patacake3578]

I am a 60 y/o woman..MRI revealed Chiari I malformation..cerebellar tonsils 5mm below foramen magnum.I have floaters,buzzing ears,feel like I have ear infections,but doc never sees an infection,have numbness in hands,sleep apnea/snoring.vertigo ( was in hospt for 3 days for continuous vertigo),hearing loss ,see "stars" often,and a lot of balance control issues( falling).The ideal of  brain surgery scares me..I see a neuro doc tomorrow.Glad to find this group! Pat

[selmaS]

  Hi and welcome to the Chiari forum.

Well u've come to the right place as we all understand how u feel.
Be advised not all NS's r experienced as much as u will want...do see a few and compare do not go with the first one that offers surgery as it is not a cure or a fix....it may help some of the symptoms, but it is done to slow progression and restore CSF flow.

Do not rush into making a decision about surgery unless it is a medical emergency...give urself time to research the drs and be comfortable with them and their course of action.

We have a list of drs compiled by the members drs, this list is not meant as a referral but  as a means to help u begin ur research...be advised many of us do have to travel to get to a true chiari specialist.

  http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  To find out more about those that already had surgery, click on our names to see our journals, many have our chiari surgery experience posted....

   "selma"

[elisar]

Hello my name is Grace Leos and i am 52yrs old i have Arnold Chiari 1 and had surgery in 1995, since January 17th when i fell and hit the back of my head i have been having problems i have been to the hospital 5 times,and still no MRI has been ordered even though i have good insurance, my right hand is almost always weak and my right leg fells like i have no feeling, but when i go to the E.R all they give me is pain meds and after almost 10 months still no MRI. I need help just don't know where to go can some one please help me i live in San Antonio Tx

[selmaS]

  Hi and welcome to the Chiari forum.

Have u been back to ur NS that did the original surgery?.....We do have a list of drs that u can use to research to find one that is right for u.,
The list is not meant as a referral...only a means to help u get started with ur research.Be advised u may have to travel some to get to a NS that is well experienced with chiari.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  From my experience the ER is not the place to go when u have chiari unless u have life threatening symptoms.Find a NL or a NS that is a true chiari specialist and go from there.


I am so sorry u r feeling so poorly, but, I must say u went a good long time  doing well....

  Glad to welcome u, sorry for the reasons u had to seek us out.

          "selma"

[joleen123]

Reading all these post were so helpful. My daughter has been suffering with headaches and always complains of stomache ache. I can not tell you how many trips were made to my PCP before she finally sent us to a Neoroligist   at Valley Childrens Hospital. I told him about her headaches which she gets on average 5 times a week and her neck is always hurting and on occasion vomits. He recommended physical therepy and ordered MRI. I was contacted last week by phone to tell me she had Chiari Malformation and to not do contact sports, a nd also she is on the cheer team at school and was told she could not do that anymore. She is only 13 and loves it,broke my heart to tell her. He did not give me alot of info on phone but can not see us until middle of Dec. I am frustrated and worried to say the least.I have so many questions but have to wait 2 months. She has speech problems and did not even talk until she was almost 4. She loves school but has to work twice as hard at it. she does not comprehind things when reading. Also her eye sight is constantly changing and complains about bluryness. I believe this is all related to her Chiari and cant beleive it took 2 years to be diagnosed.  My main question is what is so dangerous about contact sports??? He also mentioned putting her on home hospital for school because she has to miss so much school due to being sick all the time. She comes home from school and is so fatiuged takes a 3-4 hour nap, Is that part of it??? Can't wait until I get answers. Thanks so much for your blog,as I know I am not alone.

[selmaS]

  HI and welcome to the Chiari forum.

  2 yrs is really not that long...I had issues as a child and was not dx'd until age 48....so she is lucky.

At the base of the skull is an opening called the foreman magnum this is where the spinal cord and brain stem connect and this is where the cerebellum part of the brain is herniating if hit in the head and her neck the wrong way this can affect the cord, brain stem and brain in one fell swoop.

  The more active we r the more CSF and blood flows which will make the small area tighter....and the pain more intense.

  Fatigue is a huge part of this...pain drains us and daily activities r very draining.....I can not imagine going back to school...as I know how difficult it was the first time for me....reading, concentrating and dealing with all the noise, and activity...can be a bit much and then add typical teen stress.

  "selma"

[Mikevdh]

Hi all,

So glad I found this forum since I'm told my condition is very rare (maybe not so much?). A year and a half ago I collapsed with a headache that I could not comprehend. I rarely got headaches before that but there I was in the fetal position crying like a baby. I went to the emergency and they immediately ordered a CT scan. I was soon diagnosed with Ciari's and was given an MRI within 2 weeks. That's pretty amazing since I'm in Canada. We usually have long waits... but that's partly because of the other amazing part of being in Canada... none of this costs me a penny.
The neurosurgeon saw me soon after and told me the descending tonsils were the most significant he'd seen at about 16mm.  He explained the surgical treatment but said to wait for more symptoms since the CSF passageways, though quite narrow, were not currently blocked. Thankfully I don't think I've had a lot of symptoms. I get more headaches than I used to but nothing like that one attack and nothing like my wife's sever and frequent migraines so i don't complain. I do have weird feelings in my neck (sort of squishy??) but assume it's mostly my imagination. I have long suffered from pronounced tinnitus but think this has more to do with drums, gunfire (Army cadets as a teenager), and hereditary hearing loss. All in all not sure I am having too many symptoms.

Sorry that was so long... now for the question.

How often should I get checked (as in a follow up MRI).

The neurosurgeon did not give me a timeline for check ups. I asked, but he said wait for symptoms. I thought this wasn't the best advice since the development of a syrinx could cause irreversible damage. But I can't seem to find advice on this on the official sites. It doesn't cost me anything to get further tests but the wait can be very long (I got in so quick the first time because the powers that be thought my condition could be dire at the time). I don't want to take up valuable MRI time from needy patients if it isn't necessary. As for peace of mind, it is mostly my wife that worries.
So if anyone has some sound medical advice or experience on this I'd really appreciate it.
Thanks!   :)

[selmaS]

  Hi and welcome to the Chiari forum.

It is highly possible that u do/did have more symptoms but  attributed them to something else....many do...we adapt to them, consider them normal or think our pains r from overdoing it.

The CSF obstruction is more of an issue than the length....symptoms r also more important too...just how this affects ur overall health is what ur Dr should look at.

Once u have the DX u need to find a true chiari specialist...get a few opinions on how this is affecting ur overall health....


   "selma"

[JenOKane]

I just found out that I have Chiari 1 Malformation.  I am going to see Dr. Verna Porter of UCLA on Nov. 8th.  I've been doing a lot of research and I'm scared.  My cerebellum tonsils are 8mm, I know that's not huge but it is concerning to me.  I have extreme short and long term memory loss, major fatigue, slurred speach, mild headaches and more.  I'm only 32 and feel like this isn't the way I should have to live, but I don't know that I want to have the surgery... I've read so many horror stories.  And advice out there for me?  Thanks!  Jen

[samc2011]

Please help me i am suffering from severe headaches heavy legs and my legs and arms feel heavy i got severe nausea and my doctors have been putting it down to depression for about 8 months now all i do is cry because im in so much pain with these headaches and no one will help me, i had a ct scan done aswell with came back normal and a lumbar-puncture which came normal aswell i am due for an mri scan but im so scared i dont wanna die and leave my 2 year old boy please help me!!!!!!!!!

[selmaS]

Hi and welcome to the Chiari forum.

First know that u r not alone....and leaving ur son will not help. Do u have copies of the CT scan?...or the report?...if not request it as well as copies of ur MRI and the report when u go in for the studies.....many times we r told the scan was "normal" when in fact it showed Chiari....not all drs r informed on how it can affect us, so u need to educate ur self and find a dr well experienced with Chiari if that is what u have.

Please see our drs list in the health pages for names of drs to start ur research...this list is not a referral.
Health pages is located at the bottom right of this form page.

"selma"

[lee1414]

Hello Everyone,
I started having problems August 2010. I don't know how many trips to the ER I made. They kept telling me that it was muscle fatigue, and continued placing me on muscle relaxors. After 8 months they finally did an MRI which showed I had Chiari Malformation Type I. I then found out that I had 2 syrinx, one at level C6-7 and T 11-12 measuring 2mm each. They did surgery 3 weeks later, but did not place a shunt. I recently had another MRI showing not much change. Overtime do these syrinx shrink? Or can they continue to grow? Also I am still having blurred vision, and have gone to the Optometrist several times, each time I go it's like my vision changes. Also I am about 7 months out of surgery and am still having hair loss. Is this caused from the anesthetic? Or does Chiari Malformation cause lots of hair loss?? Thanks so much for your help!

[selmaS]

  Hi and welcome to the Chiari forum.

Surgery is a trauma to our bodies and hair loss is our bodies way of indicating it went thru a trauma....it can also indicate other health issues and many with chiari have auto immune disorders like Hashimoto's thyroiditis which can affect hair loss as well, so ask about getting a full blood panel for auto immune thyroid issues not just TSH.

A syrinx can shrink after PFD....and it all depends on the type of surgery ur Dr did....and since all of us r diff it may take longer for ur syrinx's to shrink....so have grown larger post op...and that is an indication that something else could be going on like ICP.....

Depending where ur syrinx is, will depend on the symptoms u r still having....

  DO u know, did ur Dr rule out all related chiari conditions?

     "selma"

[lee1414]

They have done a panel of Blood test checking for thyroid disease. Everything with that came back normal. Which is a good thing!!! I am thinking it is most likely all of the trauma my body has been through.
What is ICP? I know for sure the syrinx have not grown, but not much change as far as them getting smaller. I am not sure about him ruling out all related chiari Conditions either. He just told me that 90% of my problems came from this malformation, and it could take over a year for me to see much change. I am doing better, still not back to my old self though.

[selmaS]

  Unfortunately when they do the blood panel for thyroid, they only test TSH and it can come back "normal" even tho u have an auto immune thyroid condition. I had this happen to me, and if it wasn't that my Dr was doing an ultra sound of my carotid arteries it would not have been found ...Hashimoto's can cause nodules to form on the thyroid itself....and I was again tested doing the other labs and finally it was showing up.

U may also want to try a low dose of magnesium...talk to ur Dr about it.

ICP= is intercranial hypertension...also known as pusedo tumor cerebri.

It is excess CSF fluid ...no one really knows y the body over produces or can not absorb the fluid...it causes pressure HA's.

It can take up to 2 yrs to feel better post op....and u may never get back to ur old self...but a new one, as u may always have some residual issues.

    "selma"

[lee1414]

Thanks for ALL of your help! I greatly appreciate it!:) It's nice to talk to someone who understands!:) One last question for now..

Is it common to need the Decompression surgery again? Or for a typical surgery for the Chiari does ONE surgery usually take care of the problem?

[selmaS]

  It is possible to need more then one PFD...reasons range...first NS doing the first surgery may have chipped away too much bone(not experienced enuff) and caused a condition known as cerebral ptosis or brain slump.

Another reason could be the surgeon did not chip away enuff bone and there is still an obstruction.

There are diff types of PFD and not all open the dura, some are less invasive, and sometimes they find they have to go back in and open the dura and do the more invasive surgery....

and last, they may have to re-do due to scar tissue forming post op.

    "selma"

[stacella68]

Do you become disabled with this problem ? I see neurosurgeon on Dec. 5 for consult for surgery. I'm scared of surgery.