10-12 mm Chiari Malformation

[lt1228]

Hello,

I am 31 years old and have had dizziness, numbness in my hands/arms/feet/legs/face, headaches, neck pain, an off balance feeling when I walk, trouble using my hands/dropping things, and a few other symptoms for about 2 months (well the dizziness/foggy head started the end of last year). I haven't been to work for a month now and mostly just stay home due to my dizziness and balance issues.

I had an MRI of the brain and neck with and without contrast at the beginning of July. My neurologist said I had a mild Chiari Malformation, but that's not what should be causing symptoms so suddenly. He did an EEG and an EMG, both were normal.

I looked up Chiari Malformation and definitely related to what others were saying so I made an appointment on my own with a neurosurgeon that knows about Chiari Malformations. I saw him today and he said my herniation is 10 - 12 mm. He said Chiari's are tricky and the only way to fix it is to have surgery. But it will take the surgery to see if that's what the problem really is and if my symptoms will go away. He is scheduling me to see an ENT to rule out everything else. I go back to the neurosurgeon on August 20th. Depending on what the ENT says and how I feel at that time, he says I need to consider surgery.

So, more waiting. More waiting and not working. Any suggestions for me? Do I let this play out? Do I need to get a second opinion before the 20th? Do I need to see a different Chiari specialist before the 20th?

I don't want brain and neck surgery, but do want my life back. Any advice would be appreciated!!!

[linnielou232]

I get so upset hearing from others that at 10-20 mm isn't considered what is giving you your sypmtoms  They don't know this for sure.  As for me.  Mine was only at 7.5 mm and as my specialist explained it to me it is not the length of the herianation is is how it affects us overall.  Mine was shaped as a cone so I had blockage.  I am reading a book right now call Conquer Chairi which has given me many answers I didn't know I was having.  Getting a true chairian specialist does help and I also suggest a 2nd oppion or maybe even a 3rd.  You will know when the time is right for you to have surgery.  I don't have any regrets having the surgery, but I still find that I deal with other issues due to having Chairi  Please know your not alone in this  and we are all here to hold your hand and to get through this.  You are not alone.  If I can help in anyway to make this journey easier on you I will do what I can.  Wishing you the best.
Linda :)

[selmaS]

  Hi and welcome to the Chiari .

U deff want to see a true Chiari specialist ...surgery is  not a fix or a cure...and u can end up worse.This is major surgery and it does have risks.

Did the NS suggest a CINE MRI to check for an obstruction to CSF flow .....??
Find out if u have related issues and conditions B4 u consider surgery, and an ENT is not the one to do the testing....find a chiari specialist.

We do have a list of Drs for u to use to research, it is not meant as a referral....only a means to help u get started in locating a Dr that is well experienced with this condition.

[Sexybare]

Hi, welcome to our family. You will receive advice from others with chiari to help point you in the right direction. Make sure your ns is a true chiari specialist. I had surgery last aug by a ns who wasn't a specialist but knew about chiari. He only did part of surgery and I wasn't any better, but worse. I have a true specialist that is doin another surgery this aug. Please get other opinions and choose your ns wisely. If I had found this forum before my surgery,maybe I wouldn't be goin thru a second. It also matters if your tonsils are wide and blocking csf flow. So you will need a cine mri to know this! Good luck sweetie...Dana