ppbbls's Journal

So I had a really rough week.  A really rough week.  I'm still not feeling great.  I'm still really upset, but you gotta move on right?  So - here's what happened.  I went for my appt with the new chiari neurosurgeon last week who also treats RSD.  I was hoping he could link the horrible pain I have been having in my legs with the chiari.  Also, my balance is still a problem.  So I think this new dr is going to be great.  And even though I tell myself not to get my hopes up, I secretly do anyway. 

To sum it up - the dr looks at my films and says "Who told you you have chiari"?  "You don't have chiair".  He goes on to say that there is absolutely no evidence whatsoever of a chiari malformation.  He says that there is no brain herniation of any kind whatsoever and that as a matter of fact I have at least 5mm of EXTRA space.  He also says that I have absolutely NO CSF blockage.  And no hydrcephalus or CSF build up ANYWHERE.  He has no idea why any neurosurgeon looking at these films would suggest anything else or why I would be taking medication (Diamox) to deal with the CSF blockage.  He asked who prescribed it and I told him the chiari institute and he tome I was lucky that was all they did because they operate on everyone who walks in.  I told him that they did the in hospital trial Invasive Cervical Traction (which involves drilling two screws into my skull) to assess for Funstion Cranial Settling because they suggested a Craniocervical Fusion surgery.  He said that there was absolutely NOTHING to suggest that was necessary.  I told him that then they prescribed the neck brace, CTO jacket and physical therapy.  I have been doing these things for 6 months.  He said he had no idea why and suggested I see a pain management dr and follw with the rhuematologist like my family dr had already suggested.  I already had both lined up. 

I went to this dr for a second opinion because I was so frustrated with the chiari institute.  They basically dumped me after they did their procedure.  I even sent them an email telling them how upset I was and they never responded. I went home from this appt last week and sobbed and sobbed and sobbed.  I had no idea what to do.  I still don't.  Who do I believe?  The chiair institute?  Or the second opinion?  Do I keep taking the diamox?  Have I been wearing these stupid fucking braces for all of these months for no reason?  Is this why physical therapy hurst so bad?  Now I have a positive R factor.  Could something else be causing my severe pain?

The second neurosurgeon also strongly suggested I see a spinal surgeon OUTSIDE of the one that I saw at the chiari insitute.  I have an impingment on my spinal cord that he think looks kind of serious, but I told him the chiari institure told me it was nothing.

I can't explain how I am feeling.  But my husband kept me busy.  We had a birthday party and a christening that he forced me to go to and I had to fake not being morbid - and it kind of worked.  Then I had a day to myself where he worked and Dev was at school where I basically slept and cried all day.  Then I had my pain management dr visit.  That went pretty well -  and that afternoon  my friend came from out of town to visit.  She has kept me pretty busy.  At first I didn't really want company, but it did the trick. I'm ready to start again.  I have the rheumatologist on Tues and I will figure out what to do after that.

So I made it.  Not back to my regular self, but I'm here.  With a headache.