Hello everyone!
In my former life here on the forum, I was known as skoshi314. I had been inactive for quite some time and decided to just start over with a new identity. As a refresher, I'm from Oklahoma City, was fused T-10 thru L-5 in June of 2008, I'm now 47 years old and scared to death.
I'm going to apologize upfront because I'm afraid this may be a bit long. I'm now 21 months post op and I'm still dealing with pain levels in the 6-7 range everyday, it's much worse first thing in the morning and in the evening. I can not stand upright unless I bend my knees a lot and walking any distance at all is a struggle. I am still taking narcotic pain meds just to get through the day. I work full time, have a daughter in college, a son that's a junior in high school and a daughter in 7th grade and I've been married for 24 years.
I finally decided it was time (actually way past time) to find out whatís going on and why Iím not getting better. I saw another adult scoliosis surgeon here in OKC 4 weeks ago, Dr. Vincent Devlin. I truly like him and I have to say he was so much more thorough than my original surgeon. Dr. Devlin took about 15 x-rays before he even saw me during my first visit. After looking at my past MRIís and current x-rays he sent me for a CT scan. I was hoping he would tell me I was a big baby and I just needed to work harder with my PT and suck it up for a while, that itíll get better. Not so much. Starting from the top, Iíve developed severe kyphosis immediately above the fusion at T-10, I have about half the lordosis I should have in the lumbar area, the fusion in the L-3 to L-5 is very thin, S-1 is beginning to collapse and Iíve developed severe arthritis there, and due to the kyphosis and loss of lordosis, my sagittal balance is way, way off. The repair job is too big for 1 surgery, so he recommends 2 surgeries a week apart. He would fuse T-3 through S-1 and use iliac screws to secure it, do several osteotomies to get the lordosis corrected, correct the kyphosis to get the sagittal balance back, reattach hardware the full length and several other smallish things that I canít remember. The fusion would be done primarily posterior with a small anterior section in the L-4 through S-1 area. Dr. Devlin also said itís not a matter of IF to do the revision surgery, it a matter of WHEN to do it.
After Dr. Devlin explained everything, he recommended I get another opinion before I make any decision on surgery. I have scheduled an appointment with Dr. Robert Wienecke here in OKC for May 3. He is a neurologist specializing in spinal deformities and adult scoliosis. Both doctors are SRS docs which makes me feel better. Iím anxious to hear what a neuros has to say since all the doctors Iíve seen up to this point have been orthos.
In a strange way, I was relieved to learn there was an actual problem. Not because Iím looking forward to the revision, but at least now I know Iím not crazy. Iíve been saying for months I felt there was a problem and something wasnít right. I kept hearing ďGive it time, itíll get betterĒ. Guess what? I should have listened to myself a long time ago. This has been the most exhausting, depressing and frustrating thing ever. What I would give to wake up in the morning and not have my first thought, literally, be how much I hurt and whereís my meds. I would love to go to the mall and be able to window shop (ok, really shop) for as long as I want not just park at the door closest to the store I need to go to and then huff and puff back to the car, to catch my reflection in a mirror or window as I walk past and think to myself that Iím stooped over like an 80 year old.
I warned you all this would be long, and I apologize for that. I just need to get the details out and start getting feedback from the people that know more about all of this than anyone in the world: the people that have and are experiencing this. I guess Iím looking for any information anyone would be willing to share. Thank you all for being an amazing group of people and the best support system in the world. Iím looking forward to your replies.