Chiari Malformation type 1
Hi,
I've been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don't need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.
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Yes I had decompression surgery 12 years ago. I lead a very normal life and the only problem I have is with my back. I have damaged nerves in my back and I take pregablin twice a day.
My I ask if you think you had it done early enough that it helped with the out come of your surgery.
NannieSue,
Please tell us a little bit about your diagnosis. You mentioned in another post that the malformation is small. What more can you tell us? Are you considering surgery?
NannieSue,
I also wanted to tag @dink75 @vbrunette and @luckygirl on this discussion. You may also wish to watch this video Q&A with Dr. Nicholas Wetjen, neurosurgeon, and Dr. Mai-Lan Ho, neuroradiologist, where they talk about congenital anomalies of the brain and skull, including chiari malformation.
- #MayoClinicNeuroChat about Congenital Anomalies of Brain and Skull http://mayocl.in/2qRkMqh
Sounds like you really do need a good neurosurgeon.
Hi @mekell13, I know this post is from March, but i was wondering what you ended up doing?
I had a hard time getting it diagnosed in my area so i now had a dr in Chicago that is about 6 hours from me that specialized in chairi malformation and said it is a chairi and is at my c2-c3. They are now ordering more MRI's of my lumbar sacrial and thoraic areas. My symptons have got worse where i fall and do get hurt so im hoping it is done soon. Thank you for inquiring.
Hi everyone, I was diagnosed 2 years ago with 1.5 cm herniation. Long story short, I am not a canidate for surgery because of prior stabelization of c1 and c2 for a condition called Os Odontieum. I am looking for ways and suggestions to help with pain control. I have been taking Norco for the last 2 years, but since I just found out that surgery is not an option, i can't see myself using the norco for the remaining years. Please share your sucess on pain control.
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Hi Debi,
Welcome to Connect. I moved your message to this existing discussion about Chiari Malformation so that you can meet others talking about pain management. Please meet @nanniesue4 @luckygirl @maidmarion @dink75 @vbrunette and @david33.
Does the neurologist that you consulted specialize in chiari malformation? Since you're not a candidate for surgery, what other pain control options have been suggested?
He is not a specialist in Chiari, but has done decompression surgery, he is one of the best neurosurgeon in our area. I have been with him since 2009 and trust him. He is not quick to do surgeries, that is what I like about him. For pain control, I am now on 40mg of norco a day, but it does not help. I have an appointment with my pain specialist next Friday, but i am not hopeful he will be able to help. My regular doctor told me i was to complicated for him, lol. So I decided to change doctors. I have tried to research options for pain control, but have not been able to find anything.
Thank you for redponding.