She took off last semester from school and came home for all kinds of tests with all different kinds of drs. The only thing that has shown up was very mild optic nerve swelling, but a lumber puncture was performed and was normal. She also had a severe headache and had to have a bloodpatch put in which now has caused issues in the L1-L5 discs.
She decided to go back to school and take several online classes along with her other classes and bless her heart, ended up with a 4.0!!! She has revisited with her neurosurgeon and we will see another ophthamologist next week to rule out pseudotumor and if that is normal, wants to proceed with the decompression surgery. Even though her symptoms don't exactly match with Chiari, since all other tests are normal, he thinks it may be the issue but has told us, it may not help. She is like in a grey area because we can't get a real diagnosis and won't know if the surgery will help until we do it. She is almost 20 and wants it, so her life can get back to normal.
My question, has anyone on here have Chiari or knows someone who has that has had the surgery? Any information you can provide will be greatly appreciated.
Based on this information, and statistical information available and case studies available I would caution you to proceed with surgery. I would definitely encourage you to seek a second, or even a third opinion with the neurosurgery people, and have her see a Headache specialist.
Lastly I would encourage you to consider some alternate methods of treatment, and therapy. Including acupressure/puncture.
There are lots of other treatments from botox injections, to nerve stim to help treat headaches, and I would venture down that road before I consider neurosurgery.
I know this probably isn't the news of info you hope for, and I am sorry for that, but I do want you and your daughter to be well informed prior to making such a serious decision.
She always thought she had vertigo but now they are thinking it may have been chiari and vestibular migraines. She too was kind of a borderline chiari case. Some of her friends in the medical field thought she didn't need the surgery. She got multiple opinions and even went to the Cleveland Clinic several times.
I agree with tushnurse, get several opinions from the best doctors. Do tons of research. It is not an easy surgery and is a LONG recovery.
Feel free to pm me if you have specific questions that I can ask my friend about for you.
To forgive is to set a prisoner free and discover that the prisoner was you.
I would urged her to try massage therapy and acupressure/puncture. As someone who want to be a PT she should understand that it can have a greater impact than meds or surgery.
I'll PM you with the link.
[This message edited by Rainbows at 8:33 PM, May 8th (Thursday)]
There is many informative websites out there and there is online support groups.
I really do not have any information for you or your daughter. All I can say is do the research and to echo the others get more than one opinion.
EXWH passed away 8/31/2011