CM1 PFD times 2, and need advice.

[momto3kids]

I have a Arnold Chiari Malformation, and have had 2 Posterior Fossa Decompressions.  Since last, have been having increase in symptoms again.  Neurologist has asked to wait a year knowing I need a shunt!  I have decreased visual field on left and wants me to wait.  This is crazy, what should I do???

[selmaS]

  Well if u do not know if u have EDS< u can be rejecting the patch which can cause issues like leaks..etc......

Call ur Dr and ask what type of patch u have....and get to a rheumatoid Dr for an eval for EDS.....this may point u to what to do next.

    "selma"

[momto3kids]

I have a dura patch not sure on type.  But been having alot of complications from it.  The CSF leak I had was so bad they had to put a lumbar drain in to pull fluid of my spine hourly to help my head heal.  No fun let me tell you!  But pain is back to that level, and no answers.  I just wish the pain would end, so tiring!

[selmaS]

  DO u have a dura patch and if so what type?

  Oh my 2 months in ICU...ugh, I can only imagine...I had a CSF leak and was in the hospital for 5 days....no fun indeed...mine healed on its own.
  

[momto3kids]

I Had 2nd PFD due to scar tissue attaching to graft, and forming blockages.  After 2nd surgery had a massive CSF leak to the surface, so was in ICU for 2 months.  Just tired of the pain.  Everytime I go to the ER they think I'm having another meningitis issue.

[selmaS]

  Hi and welcome to the Chiari forum.

Many NS's will not admit if there is a problem with surgery they did, so u will  have to go to a true chiari specialist to get the help u need...many NS's will not touch u as u already have had surgery...but a good chiari Dr will.

We do have a list of Drs names, u will need to research the drs, and find the best one for u.....not knowing where u live, I just want to say, u may have to travel so do check with ur ins as well-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186


  In the meant time try to relax, I know it is not easy when u r having these issues....look at all the testing u had so far- did they rule out a syrinx, in the cervical spine, thoracic and lumbar?...tethered cord, sleep apnea, Ehlers-danlos, POTS, PTC....which I think u feel u have sine u believe u need a shunt....

May I ask y u had the 2 nd decompression?

     "selma"