Chiari Malformation Community
Should I have the decompression surgery?
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Should I have the decompression surgery?

I found out I had Chiari malformation 9mm back in October.  I have been diagnosed since I was 15 with migraines.  I started seeing a neurologist who basically blew me off about the Chiari and said I should never have surgery and it would be fine. I was having a lot of neck pain, headaches almost everyday and have had tingling and numbness in my right hand for several years.  In May, my head started going numb for several hours.  I went back to the neurologist and he ordered an MRI and then told me nothing was worse and I should be better in 2-3 weeks and put me on Topamax for the headaches and a muscle relaxer for the neck pain.  At that point, I decided to see a neurosurgeon at Baptist Hospital that my friend had recommended.  He has run both upright MRIs and catscans to ensure there was nothing else going on.  My symptoms are severe pain in the back of the head, headaches until the Topamax kicks in and sometimes still have them with the medicine, neck pain, numbness in hands and feet and sometimes numbness in my face and head.  All the tests only come back with Chiari but the neurosurgeon said it is just a mild case and he is concerned that the surgery may not fix my problem because I have more symptoms than most Chiari patients do with type 1.  He is doing a CT angiogram just to rule out anything else and then said we would discuss surgery dates if I want to go that route.  After all the research, I think it is the right way to go but would love some feedback.  Thanks  
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620923_tn?1426651955

  Hi and welcome to the Chiari forum.

The size of the herniation is not the issue, not the classification of it being chiari I...goodness that does not make it mild...ugh,  u need to have a CINE MRI to check the CSF flow...an obstruction may be ur issue as overcrowding could also play a role.

Next, have u had MRI's to look for a syrinx?...they should look in the cervical spine, thoracic and lumbar plus in doing the lumbar they can also help rule out tethered cord.

Chiari has many related conditions that need to be ruled out and addressed,.

Chiari I does not mean  mild...how u r feeling should determine  how to classify the condition .....

  If u ever have shortness of breath or a drop attack get to the ER right away...

Next, u need a true chiari specialist....u may have to travel to get to one...but it is well worth it.....I am adding a link to a list of drs compiled by the members here, the names r names of the members drs and r added to the list once they feel they were  able to treat  chiari and they liked them- this is not a referral u  should research all drs on the list.
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  "selma"
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Avatar_f_tn
You and I must be going to the same doctor :)

I am now awaiting my FOURTH opinion, but traveling a bit to meet with a specialist. I am 5mm on one side and 12mm on the other... and I have been told three times that the Chiari is not causing my headaches. I have also been urged to try Topamax as well, but due to the lawsuits going on with it and all the other info from friends/family, I am not willing to go that route. And considering the fact that a Chiari headache is not a true migraine, I think its like giving a bandaid to someone with a stomach flu... totally unrelated.

I agree about the CINE MRI and the looking for a syrinx. But the bottom line - you need to see someone that understands Chiari and that's a small percentage of the NL/NS's out there. Good luck, and vent on this board! It helps me!
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