new here- thoracic curve and pain

[chickatey]

Hi all,

My name is Katey and this is my first post, though I've been reading for awhile. I am a 24 y.o. female with a 50 degree thoracic curve. The worst of it is between T3-T6. I have not had surgery and have not yet had a doctor want to do surgery, though I am leaning (haha- literally) in that direction.

Recently, I have been experiencing a lot of pain. Not-so-coincidentally, in my mind at least, the pain corresponds exactly with where the curve is, to the left and mostly on the ribs. I get muscle spasms and tightening in the area and it's awful. I have high pain tolerance but it truly hits a 9 and is an average of at least a 6 day to day. I have seen my primary care doctor, a neurologist and most recently an orthopedic surgeon for advice and hopefully pain care, only to leave empty handed and frustrated to tears. I have received prescriptions for Flexeril and Baclofen, which help a bit, but I can only take those at bed time. I work full time and it's hard to do so in agony!

The orthopedic surgeon just wants to watch and wait, and the neurologist has me doing PT. The PT tech has me doing exercises to strengthen the muscles, which helps a bit, but even he agrees that he's beyond his depth. Basically, I feel like I'm stuck in "scoliosis purgatory" with this 50degree curve. Any tips from people in this community for how to get real pain relief and how I should proceed would be greatly appreciated! I am so tired of being in this pain, and being told that it's not scoliosis related. And thanks for reading all this, I know it's long.

[dailystrength]

Hi Katey! I am sorry to hear about your pain, especially as you try to work. Oh, I know about that!

I was prescribed Daypro and it helped - it's an NSAID and the surgeon had tried all of them and said it was the best for his own pain. It won't make you drowsy during the day so you can take it morning and night.

I never mind reading and trying to help, although my major curve is my lumbar curve. I have a smaller (30s) thoracic curve which mostly bothers me with the twisting/pulling sensation that can be exhausting- yesterday a massage helped. Try the new book Curves, Twists, and Bends from one who has scoliosis.

Wish I could help more...

[LindaRacine]

Hi Katie...

It sounds like your doctor is taking the conservative approach, and I personally think that's a good thing. I think good doctors make their patients jump through a few non-surgical hoops before they start thinking about surgery. Hang in there. Give PT enough time to see if it will make a difference. You might also consider checking out a DVD called "Yoga for Scoliosis." The creator of that video has a significant scoliosis curve, and has managed to avoid surgery for many years. After you've tried a few things, if your doctor doesn't want to do surgery, get a second opinion. Be certain that you're selecting a surgeon who does a lot of scoli surgery. You can find a list of them here:

http://www.srs.org/find/

Good luck.

Regards,
Linda

[cbeem]

My thoracic is 44 degrees. No surgery recommendations...and my doc said that there is no guarantee that surgery would fix PAIN--it's really to fix organ involvement (like when your curves are so bad you can't breathe). Now, I'm not saying he's right, but I have heard other places that the surgery is no fix for pain.

That said, flexeril? Yeah, I just tossed those because 4 advil worked better. I'm feeling better right now with the PT over and my exercise regimen in place..and more of a heightened concentration on what I can and can't do (38 years old...time to THINK before I pick something (or someone (as in my son)) up.

Lots of people on here seem to have luck with a pain management person. Maybe you could get a consult? Living with pain at a nine can't last...it'll drive you batty!

I hope you find some relief soon!
Cristy

[chickatey]

Hi all,

Thanks for the nice welcome messages and suggestions.

I have also heard surgery may not fix pain. I am certainly not gung ho to have rods in my back, but I just want good info on what will help my situation. If surgery is part of the solution, great. If not, then I'll explore that too.

The flexeril knocks me right out and lets me sleep for about 5 hours, so that's something. Four Advil or two-three Aleve might as well be tic tacs...they barely do a thing :-(. I've explained that to my doctors, but they tell me to take Advil..it's like they're deaf! I am going to look into a pain management specialist, because you are correct, living at this level of pain is taking its toll on my energy levels, social life etc. I'm a pretty happy person, but it's hard with the pain!

I am interested in the exercise suggestions. I am in PT and the therapist said I can start some gentle exercise soon- before he felt my muscles and nerves seemed too irritated, so he focused on massage. I will look into the book and dvd suggested.

The surgeon I saw, Bernard Rawlins, does a lot of scoli surgery at HSS. He seems good in that aspect, but not great in terms of looking at back problems holistically. I may look into other surgeons for another opinion. I'm okay with erring on the side of caution, but not at the expense of my day to day health and livelihood.

[figgy]

I find myself in the same kind of position as you. I am 21, and was diagnosed last year with a 60 degree thoracic curve. I was referred to the top orthopedic surgeon in Northern Ireland. A man who may indeed be a genius in the OR but has the people skills of a wet cake. I went in knowing nothing about scoliosis, thinking that a bout of physio and I'd be grand. I left feeling tearful and confused.

He told me that the back pain I'd been experiencing for the past 7 or so years which was always located around my curve, was nothing to do with scoliosis and offered no option for pain relief except for over the counter painkillers. He also insinuated that if I opted for surgery, then it would therefore be for solely cosmetic reasons and I got the feeling that he disapproved of this. However, when asked directly about his advice, as a surgeon, he pretty much escorted me to the door, as if I would sue him if he gave an opinion which could lead to any negative consequences...

Anyway, long story short, theres no one else I can get help or advice from, so I'm going it alone. Things I am trying/have tried: tone up shoes, Iyengar yoga, drinking lots of water so that the muscles around the spine are nice and healthy and the best one, massage. I figure that if my back can bend out, it can bend back in again, the spine is an organic, flexible structure and with the right frame of mind surgery is the last resort.

Like you, some days for me are unbearable. My job requires me to be on my feet 50 hours a week which is not ideal, but I'm looking for something less strenuous which could help.

[rohrer01]

I find myself in the same kind of position as you. I am 21, and was diagnosed last year with a 60 degree thoracic curve. I was referred to the top orthopedic surgeon in Northern Ireland. A man who may indeed be a genius in the OR but has the people skills of a wet cake. I went in knowing nothing about scoliosis, thinking that a bout of physio and I'd be grand. I left feeling tearful and confused.

He told me that the back pain I'd been experiencing for the past 7 or so years which was always located around my curve, was nothing to do with scoliosis and offered no option for pain relief except for over the counter painkillers. He also insinuated that if I opted for surgery, then it would therefore be for solely cosmetic reasons and I got the feeling that he disapproved of this. However, when asked directly about his advice, as a surgeon, he pretty much escorted me to the door, as if I would sue him if he gave an opinion which could lead to any negative consequences...

Anyway, long story short, theres no one else I can get help or advice from, so I'm going it alone. Things I am trying/have tried: tone up shoes, Iyengar yoga, drinking lots of water so that the muscles around the spine are nice and healthy and the best one, massage. I figure that if my back can bend out, it can bend back in again, the spine is an organic, flexible structure and with the right frame of mind surgery is the last resort.

Like you, some days for me are unbearable. My job requires me to be on my feet 50 hours a week which is not ideal, but I'm looking for something less strenuous which could help.

Why is it that there just is NO compassion out there for people with scoliosis? It is REAL it HURTS! It can be LIFE THREATENING! What gives? It just infuriates me that here we are, a bunch of "individuals" feeling SO alone. And the so-called professionals really don't have a concern in the world for us as individuals. Well, you can at least find support here. This is the only place that I can go where I don't feel 'alone'. ((((HUGS))))

[chickatey]

Sorry to hear about your situation, Figgy! Thanks for sharing your story. It's certainly not always the case, but I have found quite a lot of top surgeons (in other disciplines, not just ortho) to be lacking in people skills/compassion. They may be the guy you want problem solving in an OR, but it's tough to deal with in an office setting. Hard to know what to do.

I think all the things you're doing are beneficial. Massage is definitely helpful for me. 60 degrees is considerable though, so I'm surprised your doctor would act like it's just a cosmetic concern! Best of luck to you with everything, especially finding a job that is less physically demanding. I find sitting in a chair all day to be difficult, so I can't imagine standing!