And also I have been going to physical therapy 3 times a week... But the pain has not decreased but my back has become a bit stronger. That is all

anyone at all??? Any help you could offer i'd very much appreciate.

Surgery may be a great option for you. I don't know if removing the rods and not putting anything back to maintain your spine shape would be a good idea though.


You may want to contact that doctor in ohio and also call the florida spine institute (dr. Scott webb) and in texas, they have the texas spine institute that does tons of surgeries a year to help people with "unfixable" problems.

I live in florida so fsi was good for me but for you. You should check them out and speak to the doctors that do this stuff daily, it sounds like the doctor you spoke to that wont help you, is a bad doc and should be avoided if you can avoid him.

this is going to sound CRAZY, but i had my surgery july of 2003 and i'm experiencing what sounds like the same exact pain in...in the same exact spot. the only thing is, i've had some tests but because of the rods i'm limited to what tests they can do further limiting how much they can see into my back.
i went to pain management and that doctor tried as best he could to help me and couldn't.
he was the only pain management doctor i could find to take on my case in my area...the other doctors said it was "too complex"...bologna!
i'm going back to my surgeon (at childrens hospital of philadelphia) to see what options i have left.
i did PT as well and all i got out of it was a TENS unit (which is for my tight muscles in the top of my back)

i would like to know a little more about your pre-operative scoliosis if you don't mind... how many curves did you have? were you braced before the surgery? how much of your spine did they fuse?
maybe our backs are similar and there is some underlying problem that the docs are failing to catch on to...

I also had scoliosis surgery in '98, and i am now 23. I think i have the same problem, but the pain is on the right side of my back. My surgeon said he could take out part of the rod and hook, but doesn't know if it will do any good. It is my last year of college, and i have been playing sports and it gets much worse when i'm in season. One pain specialist said i had no reason to be in pain, which really made me mad because he has no idea what its like. Another one told me to simply stop playing sports if it hurt. Ever since i turned 21 my surgeon said he couldn't see me because he works at a childrens clinic. Everyone i go see refers me to another doctor. Any advice from anyone? very frustrated.

i just got back from my doctor today.
i'm getting my rods removed (along with the screws and other hardware)
hopefully it will stop most, if not all, of the pain.
i had hardware in my ankle before and i had pain from that so they removed the hardware. my ankle felt SO much better afterwards.

as far as your doc not seeing you since he's a children's doctor...i am 20 and i'm still going to the childrens hospital of philadelphia...i'm pretty sure there is some sort of deal that your surgeon who did your surgery can possibly do to keep you as his/her patient since they did the initial surgery.
i wouldn't want someone taking out what someone else put in, simply because surgery is like being a craftsman...each surgeon has their own way of doing things and only he will know the work that he's done better than any other person. (am i making any sense?)

i suggest going to your surgeon at the childrens hospital and just telling him how you really would like him to be the one to do the surgery. he may make you exhaust all possibilities like my surgeon did. (ie: a few different physical therapist [since physical therapists have different methods for treating things], pain management, spine doctors, and so on)

i'm getting my surgery on may 19th. i could keep you updated afterwards and let you know if i get any relief.

oh! and my surgeon told me that getting the hardware out isnt half as bad as the initial operation of getting them in. THANK GOD!!

Wow.. Haven't been on this forum in a long while. Good to see some replies. Well I had surgery to remove the rods in August 06. Still have plenty of back pain. =( the left side has kind of numbed down.. and the majority of the pain is now on the right. but my back pain is all over and my back is stiff. So pretty much, the surgery was unsuccessful, but I do just feel a lot better emotionally about not having rods and hooks in my back.

I came across this site by google. i am relieved to see people experiencing the same pain as myself. I had surgery in 1991 @ Childrens hospital of Philidelphia. am 30 years old now. Everything was great for the first 5 years but have been in pain ever since. It was about once to twice a year but lately has been ALOT more frequent. I have severe muscle spasms that are right beside my rod or may be the hook. I have spoken to several Dr's and they suggest removing the rods but my original surgeon @ CHOP didnt think it is necessary. The pain i guess i am used to but would love to be relieved a little bit more than i feel. My thoughts are with everyone going through this. and am interested to know and share routines with others. Take care.

Many times twisted pelvis (ilium upslip/rotated innominate) causes scoliosis and tension to whole body. Once pelvic malalignment is corrected by manipulation pains are gone. If you only correct spine with surgery you don't correct the cause of pains. Scoliosis is just an symptom, not the cause.

Please stay under the care of of spinal surgeon, and do not just attempt to find various self treatments for you pain.

If need be, continue to seek the advise of the best spinal surgeons you can find.

Self treatment with various advertised methods, is the worst thing you can do, especially after having spinal surgery to start with.

Chiropractic care post surgery, is not a good idea.

Fran

I had surgery in 96 and did not have any problems for many years. For the last 6-7 years I have had terrible back pain (mine is my lower back on the right side, scar tissue pain, and random piercing pains). I have asked my doctor about this many time, but he says he does noy know what is going on and that I should just take them out. Well, I don't want to take them out not knowing if that is going to help (waste of time, money, and pain). I was very interested to hear that there is somebody else out there having a similar problem. If you find anything out please let us know!

Hello everyone,

I feel like I can relate to nearly everyone whose posted. Im 25 years old and have had one procedure done for scoliosis when I was 19. I had a 61 degree angle and it was reduced to 27 degrees. I'm disappointed to say that I have been in agonizing pain for the past 3 and a half years and it is a challenge for me to get out of bed in the morning on some days. I feel like my back is pulling me downward to be horizontal and getting up requires me to focus in order to jump out of bed. I only take hot baths because they are my only temporary stress relievers. I can work somewhat effectively about 3 times a week, and then on Thursdays and Fridays get so worn out over the accumulated knots of stress in my back that I feel like dying. Weekends are used to recover, not to party. I feel like I'm in my mid 70s because I am always stiff. Always. I feel like what I might have is accumulated scar tissue around the metal rods. I constantly try to crack my back and curiously enough, massages wont relieve me unless they are really intense because it takes serious effort for me to even feel a persons hands working on my back region. Any suggestions?

Kathleen,

I had Harrington rods placed on my spine in 1986, I am now 36 and the only pain I experience is due to being overweight. I was lucky, and aside from a bulging disc experience only the usual muscular discomfort/knotting.

I did however meet a woman a few months ago who said her sister had the same rods, and had to have them removed because her body was rejecting the foreign materials. She had them out, goes for physio 3 times a week and is in good health.

In addition, my aunt had surgery on her back (non-scoliosis related) in the early 90's which resulted in a lifetime of traumatizing pain, they used screws on her metal implant which were rejected after fusion, and she refuses to go for surgery again.

I would consult further opinions and not make any rash choices.

Best of luck,
Dee

i had the same surgery in 88 when i was 14, now i am almost 35, and i'm having severe pain in my lower back and left side! I live in florida, and i have no insurance, so it's hard for me to see a dr! I have filed for social security disability, and it's been a year, and i hired an attorney! My legs swell like there is no tomorrow, i can't only sit or stand for about 30 min, i can't sleep at night cause the pain is so bad....i'm willing to talk to anyone, about this,...

I had a different scoliosis surgery, the titanium stapling, two years ago. For the past few months I have been experiencing the same pain..... horrible lower back pain.
This "new procedure" seemed to be working for a few years, but now I'm not feeling so good...

Make sure that your vitamin D levels are high enough. This is because low vitamin D status might increase the amount of pain one experiences. It also causes many chronic illnesses. Getting enough vitamin D is probably unlikely to be a total cure for people like you, but it might help in relieving some of the pain.

i have been experiencing pain in my left side of my ribs--trouble even breathing. in '93 my rods were put in correcting an 86% curve. i have had 4 c-sections resulting in 4 beautiful boys--who hopefully will not have scoliosis. but i didn't know if it was my back killing me or the fact that i have had 4 boys in 8 years!! i am so sorry for your pain but am hopeful that we will find answers to help us or girls in the future!

I had a harrington rod put in at age 14 to correct a 76% curve down to a 36%. This was in 1978. I am now 45, and experiencing life=changing back pain & leg weakness when walking much at all. They say it is a pinched nerve in the lower back causing all of this, and epidural shots into the nerve in question produce mild improvement for a couple of months, but certainly not complete by any means. I have had the spinal stimulation procedure recommended to me by a back pain management specialist. Does this seem like a reasonable option with the scoliosis rod? I just want my life back! Until this I have had very little back pain or problems with the rod.
Any ideas would be appreciated, or answers from anyone who has had this procedure done with a harrington rod situation. Thank you.