Any good Spine Specialist is SC or NY? What is Flatback? Anyone have Disability with Scoliosis & Harrington Rod?

Hi,

Can anyone recommend a specialist in South Carolina or New York? Also what is "flatback" and Can anyone tell me if they qualified for disability with Scoliosis or a Harrington rod. I had a Harrington rod put in for Scoliosis 22 years ago and have had pain from it ever since. I was told if I did not have the surgery I would be crippled and probably would not live long past the age of 30. The surgeon who did the surgery in Albany NY would not acknowledge my pain post recovery and once said that "I was the only patient of his that ever complained about pain from the rod".  A few years ago he left the region without even referring me to a new doctor. I went to see another Orthopedic Scoliosis Specialist in Albany and he wouldn't even talk to me during the exam, he talked into a recorder saying "patient this and patient that" in the end I was referred to pain management...I didn't go.

I found a very nice Neurologist in Myrtle Beach but he won't investigate what could be going on, he said an MRI wouldn't tell him anything because the metal would interfere. There are two visible bulges sticking out of my back at the top and bottom of the rod and he said to me "any doctor can just look at your back and see there's something very wrong...you have things sticking out of your back!" (It's not very clinical I know, so many of you know these complex medical terms for what is happening to your spine and I can only describe things are bulging and it would take too long to describe the pain). He strongly urged that I don't see another Orthopedic doctor because he said they will only want to do more surgery and he feels they will only make things worse, he suggested I just try to treat the pain. He has given me all the "good" drugs and they all make me vomit, the morphine patch landed me in the ER with vomiting and a headache that made me feel like I was going to die, the sad part was that it did make the back pain stop.

At present I still don't take anything for the pain, I use Ambien and Valium  to get through the nights, the best thing that I can do during the day is alternate between sitting in a chair with good back support and walking around, having to stand still is horrible...I will sit right on the ground if I have to, lying down makes it worse that's why I need something to help me sleep. Thanks to a supportive boyfriend I have been able to stop working because every job that I have tried makes the back pain too terrible. I just initiated the process of applying for disability last year and the lawyer has told me that claims for back problems are really hard to win and keeps  
urging me to find a doctor that will make a good case for me.

I am very afraid to have more surgery after reading some of the stories here and I had a terrible ordeal during the first surgery, I stopped breathing and they had to give me Narcan, I woke up feeling everything and dry heaving in the ICU and they couldn't give me anything for the pain, I had a tube in my back for a few days draining a blackish fluid from my back. For those of you out there that are being told you need this surgery or the curve will just progress I wish I could help you but I can't, not a day has gone by that I don't wish this thing was out of me and I was back the way that I was but I know I had to have the surgery, my Scoliosis was diagnosed at age 11 but I felt it twisting my body as early as age 7, at age 13 I shot up at least 6 inches (my full hight is 5'8") and that's when the real pain began, the right side with the hump felt like a sword going through my back and my right breast, the doctor said it was the Scoliosis pulling my muscles. It was damned if I do and damned if I don't.

I would really like to find a doctor who would look at what's going on with my back and really diagnose what's happening around the rod and causing the pain and what is changing in my back to cause the bulging. We live in upstate NY and spend a few months in Myrtle Beach in the winter but I have no idea who to see, I had to wait about 9 months to get in to see the last guy who wouldn't even talk to me.

Getting back to the "flatback"...some of you described this and it sounds like me, I feel like I walk very straight and ridged but when I catch my reflection in a store window I'm bent forward. I've never heard of flatback before looking at this page,  also over the past few years I feel like I'm losing the natural curve in my neck, it feels like it's becoming straight from where the rod stops to the base of my skull and my neck pain is getting worse...is this happening to anyone? is it associated with flatback? .

I would like to ask one more question...Has anyone had a lot of changes to their pelvis from the rod? I started out with a lanky narrow body, after the surgery my tailbone stuck out a lot (making me look like I'm sticking out my butt) and over the years the ball joint part of my hips just got wider and wider and my pubic bone sticks out, I get pain in all these areas and my hips look very disproportional to the rest of my body...am I alone? I will appreciate any advice on any of these issues. Thanks and good luck to you all with getting help with your pain, I know I don't need to describe the pain because so many of you have described what it feels like, yet recently a doctor said to me "Do you know they've discovered Scoliosis doesn't cause pain"...I was speechless. If I have one piece of advice for anyone it is don't go into the examining room alone, I started bringing my boyfriend in with me and the doctors stopped saying things like that to me.

[LisaAnnMarie]

Oh my gosh!!!  You and I have the same problem going on.  I just became a member today.  I didn't know what flat back was either.  I was sitting in the car and my son says to me why do you have this bump where your head meet your neck?  I didn't even realize this.  I looked in the mirror and it looks like I am curved forward.  I use to have great posture.  When I stood sideways I looked 90yrs old.  It looks horrible.  I also go to Mrytle Beach on a regular basis to.  I can tell you this much, I had my work done at the Hospital of Special Surgery in NYC. This hospital just has doctors there who specialize in scoliosis and only scoliosis/deformities of the spine.  I recommend the doctors and hospital there.  They have people coming there from all over the world to go there.  Maybe that is a place you can look into.  It was wonderful, I really mean that. I had my surgery and I was out of the hospital in 4 days(that was not because of insurance either)  My recovery time was 6 weeks.  I really was very lucky having no problems. It is only now 30 years later I am having aches and pains and of course starting to look 90.  
I also read an article about scoliosis being  "painless and that it CAUSES no pain". What drug are they on? Obiviously they are not part of the real world.....go figure!!!
I hope I helped recommending you to the hospital.
LisaAnnMarie