stage 1 of chiari malformation does it get worse

[lollypop28]

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....