Chiari 1 malformation

[Cathie9696]

Is their such thing as mild chiari malformation.  my husbands MRI just came back and said he has right sided assymetrical chiari malformation 7mm below.  His Dr. does not seem to concern however his symptoms (constand ringing in right ear, weakness in limbs, shorterm memory loss, hands swelling, dizziness etc.) have all come about  withing the last two months but slowing coming togeather over the past two years and progressively getting worse.  Whata do I do.

[buckeye4]

Sounds like you know what your talking about. Unfortunatley I don't. My son is 6yrs. and has had headaches for about 2 months. Had MRI got report:Prominent downward displacement of the Cerebellar tonsils below the foramen magnum consistant with Chari I Malformation. The Cerebellar tonsil are inferiorly displaced be as much as 15mm and syrinx is identified. We are seeing neurosurgeon on Wednesday. I have know idea what to expect. Worried... Is surgery a possibility? What questions to ask?

Cristy

[selmaS]

  Hi and welcome to the Chiari forum.

First the surgery is not always the answer, u r at the beginning of testing and need more...next is the CINE MRI to see if u have a CSF obstruction, this many times is the cause of the symptoms u r dealing with, Med schools do not prepare Drs on how this affects us, and they all use their own opinion as to what is mild, and when they use terms like that they r referring to the size of herniation, not how u r feeling...so it is very frustrating.

U also need a true chiari specialist, one that is well experienced and informed on how chiari can and does affect us no matter the size of the herniation,

Plus, u do have to look to all related conditions and issues as they play a big role in how u feel and if u have surgery how u heal post op.

Do use the list of Drs we have posted to research Drs to find the right one for u. Know that u r not alone in this bumpy and very frustrating journey. : )

[LelaL]

Hello,

i am a  20 year old female that was dx with chiari 1 malformation two weeks ago. the neurosurgeon told me i have a 6mm herniation and that its mild and nothing to worry about. there is a problem, i have been in constant pain for over 2  years now. i am in college and its getting harder to be in school and concentrate. i been having memory loss, SEVERE headaches (every day), numbness and tingling in my right side. tremors and my balance is deteriorating. these do not seem "remarkable" ( his words) enough to do anything about. im beyond frustrated, i will be applying to medical school soon and the rate im going there is no way o can live my life feeling this helpless. i know wanting brain surgery is not a normal thing but i have tried every medication they could think of. they have given me anti-depressants, muscle relaxants, everything and im the same way. Help

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur chiari journey with us....and I hope u stick around and share more of ur journey with us : )

[kimmie2951]

I am 40 now and I had my first brain surgery about 5 years ago. Now I went for my second bran surgery and surgery is the only option to have to get rid of these symptoms. I suggest that you see your family doctor and he/she will refer you to see a Neurologist on wherever you are located near. It taks longer to recovery from the first surgery and kids are too young to get this and I have been diagnosiseed with this conidtion in 2007 before I went into surgery... It's only comfortable and sore when you have staples or clips in, but it feels good when it's been removed. You'll have to suffered without pain medications and let it take its course to heal. I was born with condition, but never caught it until five years ago in my late adulthood.

From Kimberley Lazore

[selmaS]

  Hi and welcome to the Chiari forum.

Getting ut DD to a chiari specialist is the best way to go, and Dr Frim is a good chiari Dr, but I believe he only works with pediatrics....I could be wrong so do call and ask.

Topamax is a med I am currently on, and it is awful the first 2 weeks until u adjust, but I am post op...I was on many meds b4 surgery and nothing touched the pain I had ....

Many Drs may not take her herniation seriously as most need to see a 5mm herniation or larger for them to feel it could cause symptoms.....

I am here to tell u it is not the size or length of the herniation but the width, which they do not measure, that can cause the obstruction of CSF flow....

Ask about a CINE MRI, and MRI's of her thoracic, and lumbar spine rule out all related conditions, and know that surgery is not a cure or fix, and that with surgery there r risks, and it is possible to feel worse post op......

Take ur time and research Drs and all that goes with it and make sure she is tested for all related conditions b4 u decide on nething.