Well just returning from NS appt and unfortunately the reality of what I am facing is overwhelming! Thank God I could get home and come here to my Spiney friends and connect with what I am now needing...
NS reviewed MRI CT Flexion X-Rays and confirmed I definitely am having a collapse of C-6/7 onto T-1 (nerve root junction 7/8 affected) and interventional surgery needs to be done both front & back.
Front(anterior): C-6,7,T-1,2 - plates/screws
Back (posterior: C-5,6,7,T-1.2 - plates/screws
The loss of my arm (major damage to hand/fingers) left side is advanced with nerve damage & muscle atrophy. My right hand is having more progressive numbness, and told it is progressing as the left has. (verdict = losing both arms/hands/function without surgical intervention)
Re: spinal cord "deformed thecal sac" = mild now, told not contributing to arm/hand issues (???'s)
Next step is new MRI CT for neurologist 11-2, ENT eval 11-30 and review results with NS for pre-surgery map.
I am overwhelmed facing this reality and knowing it has to be both front & back surgeries all together = NS said "full day of surgery".
My unique deformity (C-1/2 from birth - tethered and hypermobile) + mass bone (C-3/4, 4/5, 5/6) with ostheophytes is complex & the curvature issues above where the fusion is and the deformity all have been issues for an OS not to do surgery "unless absolutely needed = neuropathic symptoms constant" for past 4 yrs. In April, 2010 when neuropathy began in arm/hand/fingers he assessed surgery 60/40 for successful surgical fusion with hardware + needing possible additional surgeries posterior and before I got my ENT eval done backed out of the surgery, saying "surgical outcome questionable for successful resolve of neuropathy and high risk of complex 2 surgeries needed anterior + posterior into the mix"!
I am of course in a real state of concern with confidence of surgeon = successful surgery to allow decompression of nerve roots BUT it's requiring major interventional surgery procedures with hardware fixation and complex engineering skills needed for "junction surgery" C-Spine into T-Spine anatomy (they are still being challenged with hardware implemented skill level of unique dynamics for anatomy and non-symptomatic and further complications post-surgery).
Also I cannot even know at this point...if I can even be up for that much surgery, even if a surgeon feels confident of what they can do to decompress 2 levels, the major hardware fixation and engineering of it has to be on a "mastery" level + the reality of post-surgical outcome for my c-spine being re-engineered with hardware at 61 years of age = with 4-5 levels above already in complex fusion and deformity.
Major Issues of Concern:
- Need highly skilled mastery level with complex junction surgery and hardware not compromising adjacent levels (none known or found at this point)
- ??? priority #1 is can I live through these 2 serious surgical procedures and get thru the painful and long recovery knowing it has uncertain engineering and no guarantee for neuropathy symtpoms to improve
- ??? not take on high risk complex surgeries and live with losing my left hand compromised and permanent nerve dysfunction and chance of losing my right hand with same compromised nerve damage with little to no pain; primarily numbness in fingers, weakness in hands.
This truly is a hard place to be right now...I would vote for living with slow deterioration in hands versus going under horrendous major interventional surgery with questionable outcome for me in the future.
Appreciate hearing from my Spiney Warrior Friends...oh God this journey gets more complex and more difficult and in so many ways this is really taking a toll on me right now.