Oh now I'm really confused

[greeneyes247724]

I'll try to make this short....=)  I've had horrible headaches since I was 12 (I'm now 32)....wake up with them almost everyday...always in the back of my head....get sick alot of the time because of the pain....light senisitive...none of the typical migraine meds help at all...found out I have a chiari malformation with spinal fluid blockage and the size or whatever is 6mm...3 neurosurgeons basically said I need surgery...now yesterday I talked to the head doctor at the Houston Headache Clinic and he said he didn't think that surgery would solve my headaches and most neurosurgeons automatically want to do the surgery but don't really look at the final outcome and if it will really solve the headaches and make them go away....so he didn't recommend the surgery at all especially since I don't have any insurance.  I was also tested for having a PFO in a headache study which I do but was the 1 out of 3 that didn't get the device to fix it.

SO.....now what do I do.....lol  I would really appreciate any suggestions or advice!!  I'm sure I'm like so many of yall out there that are so frustrated and just want the headaches and pain to go away!!  Thanks!

[chiarigirl11]

hi my names elle and i think u should probably go to a chiari specialist too or go to a hospital in  Boston because they have some of the best neurosurgeons.
hope everything works out

~~Elle~~

[greeneyes247724]

Unfortunately I make to much to qualify any assistance like that...=(

I did go ahead and have 2 more MRI's (thoracic and cervical) done which was suggested by Dr. Bindal.  I got the results today but have no clue what they mean....haha  My appt with him is on Tuesday so hopefully he will be able to clear some things up.  It looks like the thoracic is ok but the cervical is ify.

[selmaS]

Hi....u may want to sign up for medicare and medicaid...and send ur MRI's to a chiari specialist.....TCI does help some without insurance.

And u might as well get an opinion from an expert in chiari....not all NS are well informed on chiari and go by some info from med school which is minimal.

Dr Oro will also look at MRI's and advise as to if u can be helped.

It is true that not all surgeries result in removing all symptoms....overcrowding and CSF blockages can lead to nerve damage and if left alone too long can cause perm damage.

Do look into getting a second opinion from a chiari specialist and look into medicaid and medicare .

"selma"