chiari

[ranger1989]

I was diagnosed with an 5mm Chiari malformation and syringomyelia 9,7mm at c6-c7 in august 2006. I had surgery in august 2006. It called decompression. But I always get headache, neck pain. I have seen others neurologist, one neurologist said that I no need surgery at that time, the others said that I have fibromyalgia. Now, all of them just gave me medicine. But this medicine doesn't work. I still live with it. Now, I don't know what must I do.  I am at a loss and would really appreciate some help. Thank your help!

[selmaS]

  Not sure if u mean u want info on a Dr close to u, and I have no idea who is in that part of the world.....we create our lists of Drs as members find one they have been to, treated by and liked....I do not have ne for ur area at this time.,

U may be able to research Drs and find some to start a list.....

If u r looking for info, ask some questions, and I will do my best to offer insight, and mayb ur current Dr can use it, the best advice is to offer names of Chiari specialists here for ur Dr to consult with......I would suggest Dr Oro, Dr Bolognesse,  Dr Henderson,or  Dr Rosner...any of these should be able to consult with ur Dr to help give info.

[ranger1989]

Thank u for your advice! I've done MRI last year. The doctor said nothing different. They said that my syrinx still 9.7mm and my chiari at 5mm. Can u give me information doctor can help me? I live in Asia. Thank u for your information.

[kami37]

What kind of dr should i c for this..i will def check it outbefore surgery
and reg vitamins can a simple blood test b done to c if i have a problem on this area..thank you sooo much for your advice

[selmaS]

  In looking at the symptoms I also said this is not me, but I was wrong, I do have it and a good NL and NS that know about EDS will know how to do a clinical test ....and ask the right questions to rule it in or out.

If u have EDS a patch from ur own tissues is better as u would have a higher risk of rejection of a patch made from nething foreign, such as cadaver, bovine, or synthetic,.
If a patch fails, u will have a CSF leak, with rejection u could have the patch fail, and u could develop an infection too....

Make sure and have a Dr that knows EDS check u.

[kami37]

I looked up the eds but have none of those symptoms thank god and i didnt see any specific testthat can b done  so i think im in the clear forr that, and is one kind of patch better than another

[selmaS]

  Hi and welcome to the Chiari forum.

There are several related conditions u may have or u may have developed something post op...

Have u had a MRI post op?

Ask and see if ur syrinx has shrunk since surgery, not all do...and that is the hopes post op.

Ehlers-Danlos Syndrome is a related condition many times mis dx'd as Fibro....so do get checked for that too.

Hang in there : )