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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.
6 Responses
476359 tn?1207842508
Wow!  Almost all of your post sounds like what I've gone through!

At 23 years old, I was having chest pains and found out that my spine was sticking into my heart causing it to spasm.  My curves were 78 degrees and 84 degrees (a vertical "S")!  I too, was told that if I didn't have surgery, I would be crippled or one of my major organs would be punctured.

I was supposed to have one six inch rod, but, once they got in there, they ended up needing eight!  That was done in Orlando, FL.  My husband is a land surveyor and was hit by a car, while doing a survey on a bridge.  His knee caps were crushed and he ended up in a wheelchair (God healed him, by the way.)  He was 6 ft. 3 in., and 263 pounds, and I tried to lift him and his wheelchair over the stoop at our house.  I had to have another surgery - also done in Orlando.  The doctor snipped a nerve, leaving me in severe pain with a "dead leg".  I couldn't stand for even two minutes without SEVERE pain.  I remember many times I had to sit down on the floor in the middle of Walmart, because it hurt to breathe.  After LOTS of tests, both orthopaedic and neurologic, I needed another surgery. When he got into my back, he found that, because I was using my pelvis to do things that my whole back should be doing, my pelvic bone was pretty much mush.  He ended up adding 4 more rods.  I now have rods from my neck well into my tailbone!  He was in Dothan, AL.

As for no pain, you can tell that doctor that he doesn't have a clue!! I have been in pain 24/7 - especially at night.  If I roll over it feels like a knot tightening in my back - SEVERE pain!  I take Demerol with Phenergan when I just can't deal with the pain any more.  I also take sleeping meds, but none of them work.  I don't sleep well at all.  I used to be on the Morphine patch, too (the strongest there was), but I was too afraid that I would become addicted.  I have a very weak stomach so pretty much every pain med that I've ever been on has made me sick as a dog!  They even tried me on Oxycontin, but it put me in the hospital in a semi coma.  Prayer is the only thing that makes life bearable!!  God gives me peace when I'm in the most pain!  He even makes me a happy person, even though I have to suffer a lot.  He's also what gets me through the nights!  When I'm awake at 3am, I can talk to Him, and I know He is listening!!  I don't have to be afraid, bored, or lonely!

I was a Christian school teacher of fifth graders (which I adored), but finally got to a point that I had to hold on to their desks in order to get from one point to the other.  I took a deep breath to make it from one end of the hall to the other.  My hip locked on the playground one day, so I decided that one of the kids could be hurt and I wouldn't be able to get to them.  I gave it up at that time.  I tried going to a doctor at the Houston Orthopaedic Clinic in Columbus, GA.  He said that another surgery was too dangerous! Now, I write, watch tv, play computer games, read, and do crafts.  I use what I've been through in the books that I write.  God ALWAYS works EVERYTHING out for the good!!

As for SS Disability, I was unable to get it, though I worked for almost twenty years and paid LOTS of SS taxes.  They said I was too young!

I hope I've helped!  Feel free to email me if there is anything that I can say or do to help.  Know that I am adding you to my prayer list and will be praying fervently for you!

Have a GREAT day!
Avatar universal
I live in North Myrtle and have had no luck with doctors here.  I had Harrington Rods put in in 96 and am 27 years old.  I've only been to the "doc in box" places....access medical  and little river medical clinic.  Their eyes just glaze over when i mention pain and i actually saw a note on my chart while waiting for the doc to see me that said "per front desk-do not give painkillers." Then the doc proceeded to tell me horry county is one of the worst places to live if you need pain management.  On that note, i wish you good luck and if you find a good doc in the area, please tell me.

Sonny

Sunya_c***@****
497511 tn?1213322223
There are some great neurosurgeons in NY. I go to Dr Mincy and my mother goes to Dr Hrustirch (sp). They're fantastic.
Avatar universal
I had HArrington Rods placed in my back 2 years ago for scoliosis.
They fused me from T2 to T12. I was great after the surgery but went baqck to work and really screwed myself up anyways I felt like I needed to say look up  Dr. Serena Hu at  UCSF Spine MED center in San Francisco, CA. She is an awesome spine doc just google her to see all shes done in the spinal community. www.ucsfhealth.org
UCSF spine care center  415-353-2954         415-353-2739

***@****
Avatar universal
I can't believe this !!!!!!    I TOO had a surgeon tell me in 1983 (at the age of 13) that " none of my other patients have complained of this pain before".  

My husband gets so mad at me . . . "if your back hurts why don't you just go to the doctor?" . . . .  I may have only been 13 years old, but now at the age of 40 my thoughts are "Why? No one will believe me anyway."

Best of luck . . . if you find a doctor in S.C. pass along the info - I'm in N.C.  
Avatar universal
Hello, I hope I can help you with this great doctor I went to for my back surgery. He is in Augusta Ga. not far from SC.

I have had a total of 7 back surgeries due to scoliosis. I was in Shrinner's Hospital when I was 7 years old until 16 and I was dismissed. After they finished with 2 differant upper surgeries stayed there almost a year before going home. I was in many body cast and a brace. I did work for about 27 years. Until I had one of the surgeries in 1994. I was told I had a tumor on the spial cord and some cysts. Unfortunately the lamb bone Shrinner's  used to replace my spine had the tumor in it. They had know way of checking it back in the mid 50's. Thank God it is not cancerous and it is a slow growing tumor. This past year 2010 I had 2 more surgeries. My neck was leaning forward and when I walked I was leaning forward. My whole body ached and the lower part of my spine. It was twisting because the tumor had grown and was putting pressure on my hips, legs, alot of weakness. This was done in Augusta by a neurosurgeon. He put the plate in the front of my throat. Then the next day, I had the upper surgery on my back with the titanium rod. The doctor used laser to get as much of the tumor he could. The problem it left me with Foot Drop.He stated to give it time to heal and the lower section of my back should get better. Well, with my luck it got worse. I went then to see an orthopedic doctor and after he checked my MRI I felt as if I were sleepig on rocks. The doctor stated he could help me with my problem. So then from where the last doctor put in the rod, he put the rod from there to my tail bone. Yes, I still have pain, but I am trying to deal with it one day at a time. At least I am off those terrible pain killers, only Aleve. I pray each day to get better or to accept the problems I have know control with. This doctor only specializes in scoliosis patients .You can contact me at ***@**** and I will give you the Orthopedic doctors name. He is so very thorough and has very good bed side manor. If anything changes I will go back to him.

I wish you the very best of health dear friend.
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