Welcome to scoligirl.com
Writing is current as of May 2007.
Chances are if you've made it to my site you are someone who is looking for information pertaining to scoliosis diagnosis, surgery and recovery. If so, this is a good place to start looking for answers as I've recently gone through the process.
My name is Darci. I'm 29 years old, live in Brooklyn, NY, and in January of 2007 flew back to my hometown of Wichita, Kansas for scoliosis surgery. I did this for a number of reasons. Primarily because my parents were there and willing to take the time to help me during my recovery. Secondly, the idea of convalescing in a 400 square foot apartment and navigating New York City after surgery terrified me. And thirdly, although my New York doctor had shuddered at the idea of having surgery done in the midwest (I believe his words were "no Darci, you come to New York City for surgery, you don't leave!"), he finally recalled that a colleague of his had set up shop in, of all places, Wichita. Not only this, but I'd had a recommendation for this very surgeon from my parent's internist. The surgeon's name is Alan Moskowitz, and if you happen to be in the Wichita area I would give him 5/5 stars.
My surgery took place on January 9, 2007, and was unusual in that my first memory of post op was being trapped in an MRI tube, unable to move, and hearing a woman's voice telling me that my left leg might be paralyzed. I was kept in this tube, trying desperately to move the aforementioned leg (with no success) while in a drugged panic, for an hour and a half.
The next complete memory I have (which was actually two days later) is that of Dr. Moskowitz and his staff standing around my bed. I had avoided paralysis, but the surgery had not been successful. After attaching the 15 screws that would hold my titanium rods in place, Dr. Moskowitz had made three attempts to straighten my spine with varying degrees of correction. Each attempt resulted with the spinal monitor showing decreased function in my legs. After over six hours in surgery (scoliosis surgeries typically take no longer than 4 hours) he removed the rods and sealed me up. He would continue to consult with his colleagues, but as he stood there looking down at me, he told me that in the 30 years he had been a surgeon, he had never seen a case like mine. He then offered a few courses of action:
I was in intolerable pain at this point, and pretty well incoherent from pain/medication. Perhaps even more importantly, I was terrified. I still had the echo of the word paralysis clanging around in my head, and there were no promises that the third solution would work. I resigned myself to being fused as I was if the vascular solution did not pan out. A squat immobile torso was better than enduring two more surgeries and traction to boot.
- It was possible that my problem was vascular. If this was the case he thought that by raising my blood pressure the blood would flow through my body more forcefully. This would relieve the pressure of the nerves around my spine, thereby letting him complete the surgery.
- If this failed, there were two options. The first would be to fuse me as I was, at 58 over 47 degrees. Gross.
- The second option would involve two additional surgeries. During the first he would place a halo around my spine, and then put me in traction for the next two weeks to gradually correct my spine to a point, roughly equivalent to my initial correction expectations. After this, a third surgery would then take place to fuse my spine. Double Gross.
As it so happened, Dr. Moskowitz was The Man, and a vascular problem was indeed the issue. The second surgery took a mere hour and a half to correct me to 20 over 15 degrees and I gained two (count them TWO!) inches in height as a result. I was kept in ICU for four days after this second surgery, and my blood pressure was kept elevated during this time with dopamine. This was slowly lowered, and I was then transferred to a room on a regular surgery floor.
I believe my healing was probably worse than some patients because of the two back to back surgeries. If you do read through the rest of the site keep in mind that this account may be on the worst side of the pain scale.
Plus, I suspect that I might be a bit of a wuss.
What I can say is that although the whole process was scary and incredibly painful, as it stands right now, I'm glad I did it. I'm two inches taller and my torso has enough room to spread out. I go shopping now and buy clothing that I would never have worn before - clothing for people with long torsos! My shoulder blades finally line up, and the pain that has shot through the top right and lower left of my back for my entire adult life has dissipated, along with the rib hump that used to be prominent if I bent over. That's not to say that four months later I don't still hurt, that I'm not incredibly frustrated with my inability to do certain things, and that I'm not lamenting what might have been a legendary career as a ballerina. Not that I've ever taken a ballet class. But hey, you never know.
It takes time though, and that's what I have to keep telling myself. I've got all my fingers crossed that time is on my side and I continue to heal the way I'm supposed to. There is always fear that fusions will fail, or hardware will become problematic, but for now I am feeling alright and happy to get back into the land of the living.
When I went hunting for personal adult scoliosis stories online I came up with nothing but dry surgical accounts and short bios from teenagers. I created this site in hopes that I might answer questions and prepare you for surgery if you plan to go through with it. I hope you'll be able to find some helpful information. This is a tough surgery, and it's going to take some planning on your part. You'll probably find the pictures I have posted interesting as well. And above all, find yourself a kick ass surgeon. Had I been in the hands of someone with less experience I very well might have been fused at 60 degrees for life. Or worse. There are plenty of things that can go wrong when you are dealing with the spine.
Also, before signing off, I just wanted to say thank you mom, dad and Eric (best caretakers Ever), Phil and Linda (my crack medical team), Gramie and Linda B. (card writing aficionados), Nina (big sister in training), Katie (little sister with the mostest), Jenny (for all the pep talks), and the rest of my support team (too numerous to name, you all are amazing!).
- Darci Manley, May 2007