Sorry it's been a while since I've posted. It's been 3 wks since my surgery.
I would love to provide encouragement to others that are on this difficult journey, whether they are trying to navigate the medical system to get the help that they need, contemplating if they should have surgery, or are about to undergo surgery. I want you to know that it doesn't have to be a nightmare experience. I want more than anything to offer support and encouragement to you. JUST 3 wks ago...I was still lying in a recliner with awful sx, desperately awaiting our trip to MD to finally have my decompression/craniocervical fusion surgery with Dr Fraser Henderson (who I am eternally grateful to). Let me just tell you that I AM A WALKING MIRACLE! My surgery went amazingly well....and my post-op recovery was even more amazing (truly a miracle). Within an hour of being brought to my room from recovery, Dr H walked over to me, took me by the hands and pulled me to my feet, had me walk over to a chair, up on my tiptoes and rocking on my heels (checking neuro function) then sitting up for hours. I barely used pain meds.....had no pain in any of the 3 incision sites, and was discharged in 2 days! He called me a miracle. Within a week I was just taking tylenol as needed.....and was able to go into DC to watch the 4th of July parade/fireworks. I have progressively been doing well.....just tired! I have no pain and just about all of my pre-op symptoms are resolved. When your head is attached, it's amazing how well the body can work. I am forcing myself to lay low still b/c I know that my body is working hard to heal....but I have never felt so alive and restored in my life!
At my post-op apt. Dr H handed me the surgical report that is so detailed in terms of all that I had wrong and all that he did to fix me. My official diagnoses are: Ehlers-Danlos Syndrome (hypermobility) with craniocervical instability, chiari 1 malformation, foramen magnum stenosis, kyphotic clivo-axial angle, spina bifida occulta with instability at c-1, and cervicomedullary syndrome!!!! QUITE A MOUTHFUL HUH?? In English....I was a walking time bomb! My brainstem & spinal cord were so compressed that when he did the sensory evoked potentials before surgery it took way longer than it ever should for the electrical message to reach my feet, which indicates spinal cord issues. It also took him 30 pounds of traction force to lift my head off my spinal column so that it wasn't compressing everything. He used a rib to help build up my skull so that my skull won't fall down on my brainstem/spinal cord and once everything was in perfect alignment and just where he wanted it, he used plates and rods and screws to hold it all together. He was able to put my clivo-axial angle back to perfect so that there is no more brainstem compression. He removed one of my nerves that would have been compressed by the hardware to avoid future problems. I haven't noticed anything at all so guess it's not an issue!
He went down the list of all the symptoms that I had pre-op to see how they are doing.....I think just about every one of them have resolved. I told him about how amazing the dreams are that I've had since surgery....I literally haven't dreamt in years so the surgery has obviously helped my sleep cycle as well. I hope that means less fatigue!
When I read his report, it leaves me in awe of how I walked around for so many years like this....clearly feeling awful and having days that I layed in the recliner more than anything else...but I am in awe that I was still functioning. I should not have been. Again....only by the grace of God!
It makes me very excited to come home and make MANY copies of this report and write many letters to all the jerk doctors that had the nerve to tell me that nothing was wrong....that dismissed me like I was crazy....that blew off the PT who clearly knew what he was talking about....and who literally let me walk around like a time bomb and deteriorate far more than I ever had to. I hope it knocks them down a few pegs and checks their arrogance just a little bit. The next time a patient goes in with issues similar to me maybe they will think twice before being such jerks! That will be my next phase of recovery..... I was lucky enough to have the determination and empowerment to fight until I got the answers...others aren't as lucky!
I truly believe that I expereienced a miracle in MD. I came home and quickly got it all down on paper b/c I never want to forget the details of this experience. If I can help anyone or offer encouragement, answer questions etc... don't hesitate to contact me! There is nothing more that I want to do than to pay it forward to others! I will be returning to MD on Aug 12 for TC release surgery. I am praying that it will go as smoothly! Then evenutally I need to have c4-5 stabilized..... but we need to wait until my craniocervical fusion is healed well.