Seeking some advice!!

[marinewife]

Hi Im new here. I had my scoliosis surgery when I was 12, and I am now 28! I have the harrington rods, along with an 18 1/2 inch long scar. I didnt have any problems with it until about 2 years ago. I have been experiencing alot of pain in between the shoulder blades on long the spine in that area, and alot in the lower back. I have a hump on the left side of me. I have been told that the rods have shifted! The doctors have told me that I have degenerative spine? and that my spine is curving below the rods! The pain between the shoulder blades is so bad at times that I cant even straighten my back at times, and with the lower back im constantly having to flex and bend it cause it hurts so bad, and then it feels like there is alot of pressure on the knees then. Im on several different pain killers, and muscle relaxers. Which I know its not the muscles, dealt with those throughout the years. I have seen several spianl specialist, but alot of them dont want to deal with it. Ive heard every imaginable excuse possible from a doctor! I have 3 children and all I want to do is be pain free so I can do stuff with them again, my husband is having to do everything right now and I feel so bad. I cant even pick up my 4 1/2 month old cause it hurts to bad, and to hold him to long, just hurts me too. I cant sit for long periods of time, cause once again it hurts the back to much, and to be up for to long, it hurts again. When trying to explain all this to the doctors, I think they hear what they want to hear and then they give you the look of (are you the one with a medical degree)! Im scheduled to go to Duke Univerisity tomorrow. Im hoping this doctor can help me! Does anyone else have the same problem??

[SandyC]

You need/have to see an ortho that deals with ADULT scoli. It sounds like you may have "flatback syndrome", which is very common amoung patients that have the old Harrington's. The only way your rod would have "shifted" is because it has become unhooked and you have area of non fusion.

Many doc's don't know about or have never heard of "flatback syndrome". You are not crazy/lazy/malingering or acting like you have an MD....the docs just don't know. You didn't say where abouts in the country you are located, but if you do a search on this site (see above) you may find qualified docs in your area or since you are going to Duke, at that facility. Good luck

[LindaRacine]

Hi Marinewife...

I agree with Sandy. It's difficult to find a specialist who knows what they're doing. If you don't get any help from the doctor at Duke, you may want to think about going up to Boston (Frank Rand) or New York (Oheneba Boachie).

You can find a lot of people who have similar problems at this forum:
http://health.groups.yahoo.com/group/Flatback_Revised/

Regards,
Linda

[marinewife]

Thank you all for the info. Im located in NC. Ive seen doctors from Ohio and here in NC. Ill have to make sure I bring that flatback syndrome up to the doctor. What can they do for that? All I know is its painful. My 5 year old daughter has already been diagonsed with scoliosis too. So its just a waiting game now with her, too see whats going to happen with her. Hoping she wont have to have the surgery! But Thank you all for the info I really appreciate it!

[LindaRacine]

Hi...

Here's a great article on flatback, including what can be done surgically to correct it.

http://www.spineuniverse.com/display...rticle308.html

Whether or not you have flatback, you may have similar issues.

Regards,
Linda

[SandyC]

MarineWife,
I'm just being nosy, but are you active military? My husband is retired USAF. I can tell you from exprience that none of the branches of the military treat scoli. And since the military does not treat scoli TriCare MUST pay for services that they do not supply. That also includes your daughter. I personally would not let them treat myself or a child for scoli. This is just a personal opinion. Having been told for 10 years that there was nothing wrong with me except that I had to much time on my hands and that I should take up gardening (that's a quote from one of several military docs), I'm rather jaded.

[marinewife]

MarineWife,
I'm just being nosy, but are you active military? My husband is retired USAF. I can tell you from exprience that none of the branches of the military treat scoli. And since the military does not treat scoli TriCare MUST pay for services that they do not supply. That also includes your daughter. I personally would not let them treat myself or a child for scoli. This is just a personal opinion. Having been told for 10 years that there was nothing wrong with me except that I had to much time on my hands and that I should take up gardening (that's a quote from one of several military docs), I'm rather jaded.

Hi Sandy,
My husband is active duty military. I already knew that the MTF's dont treat for scoliosis, nor would I want them too. 1 time I went in cause my back was hurting so bad, so they did x-rays and the called me in to read my own x-rays, and then proced to ask me why i didnt take off my back brace!! The doc there had no clue what harrington rods were! So know i get referred to go out to a spinal specialist. And the same will go for my daughter too. But trying to find a specialist who wants to deal with it is another story, i hear your rods are shifted, your gonna have to have surgery, but youll have to find a doctor who does it cause we dont, or I hear there is nothing wrong with you its just in your head, your hardware looks fine. It just gets really frustrating at times! Thank you all the info, this site is awesome!!

[sweetness514]

Harrington rods?

I'm a bit curious as to a lot of posters who had surgeries in the '90s and say that they have Harrington rods, b/c I was supposed to have surgery in the '80s and they would have used C-D rods, and having had my surgery in 1997, it's sometimes written that I have Harrington rods on X rays but they're not, they're Titanium and many doctors use it for a general term, so I wonder if you do have Harrington rods even if I know some doctors still use them, although I'm not sure if in North America.

[SandyC]

Sweetness,
I believe many doc's use the term Harrington and CD Rods interchangable.

[SandyC]

Hi Sandy,
called me in to read my own x-rays, and then proced to ask me why i didnt take off my back brace!! The doc there had no clue what harrington rods were!

Marinewife,
ROTFLOL LOL I shouldn't laugh, but if I hadn't been there done that, I wouldn't appreciate it so much.

[sweetness514]

Sweetness,
I believe many doc's use the term Harrington and CD Rods interchangable.

That's what I thought, meaning they're not the same rigid Harrington rod that they used from the '60s. Same thing happened to me yesterday when I saw a specialist for pain, he was a bit lost at first but then he explainded to me how they were different.

[LindaRacine]

Sweetness...

16 years ago, some surgeons (including those in the US) were still using Harrington rods. It takes some time to 1) see results from new technology and 2) get other surgeons trained in new technology.

--Linda

[marinewife]

Have arthritis in the spine.

I went to Duke and the doctor was awesome! But I did find out what is causing all the lower back pain. Since Im fused down to L-3, the L-4 and L-5 vertbraes are in really bad shape, I have arthritis in those 2 vertbraes. From what he was saying the cartilage is pretty much gone, so he is going to start steriod anti-inflammatory shots in my back, and if that doesnt work, then I think im going to see about getting those 2 fused, before they got a chance of getting any worse. But as for the pain between the shoulder blades, he said it was a common complainat in this type of surgery. he said my hardware looked wonderful for how long I have had it. he said with havin the stainless steel rods its hard to see if there is anything wrong with the bone fusions, unless they were just to go in and look, but if they are to do that then they might as well just fuse the other 2 vertabraes. So right now my PCM has put me on a patch called lipoderm hoping it will somewhat numb it a lil in the lower back for me, and plus im still on all the pain killers. This is such a long process, but i have found it helps to try and keep your spirits high!

[LindaRacine]

Hi Marinewife...

Glad you liked the doctor, and hope that you get some relief from the injections.

Something to check into in terms of your upper back pain is junctional kyphosis (or proximal junctional kyphosis). As far as I can tell, there's nothing on the internet written for patients, but you'll find lots of articles written for professionals.

Regards,
Linda