This Dr didn’t run away or insult me! He’s up for the challenge of a ‘complicated’ spine.
I’ve seen numerous orthos and neuros over the past 20 years for the chronic pain, balance, weakness, and whole big ball of tricks my spinal cord injury causes me. Now see it has been tricky to find a Dr that would treat me, they either say I must see the Dr who originally did the surgery…yes well that was over 20 years and he was pediatric surgeon and is now retired and well my a$$hole AF tried to sue him for paralyzing me during the surgery so I didn’t really get great after care so I waited until I was an adult.
No I don’t have any records from that surgery because well see above, and the hospital threw out all my records without asking me and I didn’t know they could do that because I hadn’t been there in over 10 years because I was busy learning how to walk again, escaping AF, raising my kids, and it didn’t dawn on me to take care of myself.
I have such a rare childhood scoliosis with full fusion and metal instrumentation along with the nerve damage and now so many degenerative discs and odd bone formations from the areas of the curve that were not corrected in my lower back and neck that each top spine surgeon would refer me to another, wait another 6 months for that appointment to be asked the same stupid and triggering questions all over again.
Well I think I found a guy. good and bad, because we may be talking surgery…
He says he does 4-5 cases like me a year, he was not phased by my complexity at all. He is ordering full contrast CT scans and we will meet again in a few weeks. I felt at ease with him and his office, other than the triggers, so many unavoidable triggers. But I used my new skills to keep myself grounded and present and lower anxiety and it was pretty much ok, ok enough that I went and I’m ok to go again.
It’s so hard for me to trust Dr’s so this is a huge step. Feeling scared and hopeful too. He might be able to repair and reconstruct some bad discs and restore the natural lumbar curve I should have instead of this fix flat back that is painful and hurts my hips and legs and makes it hard to stand and walk. I’m ready to let him try, at this point, I’m not working, I can barely walk anyway, I’m working on my mental health, why not consider attacking some chronic pain issues too? Back surgery has come a long way since 1988….
So I’ve only just met him, nothing has been decided or even actually discussed yet. I’m just amazed that I’m willing to discuss it. Does this mean I have less fear? Think I’m worth it? Or just making sure I don’t have to go back to work anytime soon? Or do I actually think I might die during surgery and this is me giving up? I’m actually not sure why my brain is allowing me to do this finally.
I think its because the gabapentin gave me a taste of a life with slightly less pain, and now I’m curious if we can do even better. What if more of my energy could go into living life instead of distracting from pain? That’s a huge what if, and so I’m tackling that from both physical and mental dimensions.
I’m way too stubborn to admit DBT way be working for me, especially after that terrible post I had about all being crap. Much of it was crap. But damn sometimes great things grow in crap, right? hmmm. My brain is thinking different thoughts. I know it is. Too hard to explain yet though.
The weird thing was this guy was so alarmed at my neuro state in general, my entire right side, my arm has such a deficit like my leg now.Most days I can barely hold a pen long enough for my signature. He said I have the same appearance as his older patients that suffered a stroke years ago. I explained to him about the hemiplegic migraines, and he said “hmmph” and asked me if I had a head MRI because he only saw head CT on file. I was like ummm ???? And then he got angry and said I need to call my neuro and ask for one right away. ok…
So I did call them today and of course the neuro I was seeing there has left the hospital and I have not yet been reassigned a new Dr and blah blah blah, and oh they did see some notes that I was not to have an MRI due to the metal in my back, and said well I just came from back specialist and he said its fine to have the MRI done and to call you…The nurse says well why didn’t he order one then – well because he is a spine specialist and he wouldn’t be able to read it for me, so he was just telling me that out of concern. I love (really dont love at all) this part, being my own advocate, spending hours on the phone, never knowing what to do, wishing a dr would treat ALL of me, wishing insurance would let them even if they knew how. So someone will call me tomorrow.
Its a good thing I’m not working because its a full time job being this sick