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stage 1 of chiari malformation does it get worse
type 1 chiari malformation, does it get worse and is it heredity?
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555358 tn?1292535661
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 :).
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570413 tn?1299536261
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.
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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 .
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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
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555358 tn?1292535661
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.
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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?
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620923 tn?1452919248
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"
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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 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!!!
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620923 tn?1452919248
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"
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680984 tn?1241644632
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.
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620923 tn?1452919248
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"
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680984 tn?1241644632
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.
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555358 tn?1292535661
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.

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680984 tn?1241644632
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.
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620923 tn?1452919248
keep us posted on how ur dr visit goes.

Good luck
Godspeed
"selma"
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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
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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
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620923 tn?1452919248
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"
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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.
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555358 tn?1292535661
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?
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620923 tn?1452919248
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"
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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
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620923 tn?1452919248
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"
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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...
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620923 tn?1452919248
...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.
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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?
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620923 tn?1452919248
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"
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thank you for your advice.  How do I start a new thread?
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620923 tn?1452919248
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"
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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
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620923 tn?1452919248
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"
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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
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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
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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.
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620923 tn?1452919248
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"
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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.
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620923 tn?1452919248
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"

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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
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620923 tn?1452919248
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"
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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
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555358 tn?1292535661
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.
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Thanks for your info. It is kinda nice to know I am not crazy, or have another illness... so many symptoms so little relief!!!
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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
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620923 tn?1452919248
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"
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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
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1010209 tn?1250789778
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!!!
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620923 tn?1452919248
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"
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620923 tn?1452919248
...oh , I forgot,  yes chiari can flare up and down...I called it a cycle.....

"selma"
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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.
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620923 tn?1452919248
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"
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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 (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.
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620923 tn?1452919248
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"
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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.
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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.
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620923 tn?1452919248
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"
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1078178 tn?1265073799
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.
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620923 tn?1452919248
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"
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997898 tn?1303738464
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
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I heard that your chiari (mm) cant get worse unless you have tethered cord. Is that true?
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1078178 tn?1265073799
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.
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620923 tn?1452919248
U r welcome : )

"selma"
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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
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620923 tn?1452919248
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"
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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
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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.
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620923 tn?1452919248
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"
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999891 tn?1407279676
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
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997898 tn?1303738464
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
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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.
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997898 tn?1303738464
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
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459325 tn?1274758674
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?
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997898 tn?1303738464
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
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620923 tn?1452919248
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"
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459325 tn?1274758674
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
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620923 tn?1452919248
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"
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997898 tn?1303738464
and dr. heffez at the wisconsin chiari center in milwaukee....
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1150700 tn?1288119208
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?
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1150700 tn?1288119208
I forgot to mention that my cervical spine is also not curving anymore. The doctor called is loss of lordosis.
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620923 tn?1452919248
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"
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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!!!
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1150700 tn?1288119208

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.
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620923 tn?1452919248
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"
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620923 tn?1452919248
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"
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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?
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620923 tn?1452919248
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"
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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!  
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620923 tn?1452919248
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"
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No have not had any post op appointments yet. Going to ring first thing in the morning thak you for your help!
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999891 tn?1407279676
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
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1178434 tn?1263861894
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.
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1041839 tn?1278685446
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
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620923 tn?1452919248
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"
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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!
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620923 tn?1452919248
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"

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1179332 tn?1297482590
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
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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
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1041839 tn?1278685446
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
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1218099 tn?1266599726
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!

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620923 tn?1452919248
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"
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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
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620923 tn?1452919248
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"
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1281668 tn?1271379782
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

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1281668 tn?1271379782
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!!!
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620923 tn?1452919248
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"
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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 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???
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620923 tn?1452919248
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"
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1322693 tn?1308157496
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!!
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620923 tn?1452919248
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"
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1322693 tn?1308157496
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
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1322693 tn?1308157496
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
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