New member, hello everyone

[jesscv]

Davis,
I had a thoracic curve of 57* at the time of surgery, and a compensatory lumber curve of 40*. even though my curves were definitely larger than yours, i also had significant rotation with my scoliosis. the rib deformity you describe is very similar to what i had... a hump on my back right side, and the bottom of my left ribcage in the front protruded. i will tell you that while my spine is now almost completely straight, the surgery didn't 100% correct the rotation and unevenness of my shoulders and ribs that have been misaligned & shifted over the years. my back hump is MUCH, MUCH more diminished, but the left side of my ribcage in the front still sticks out a bit. however, at 15 months post op, i am noticing that my ribs look better than they did immediately after surgery... the point i'm trying to make here is definitely do NOT have this surgery simply for cosmetic reasons.

[Davis]

This doctor has no training in spinal deformity

chris wbs, I dont understand how you get that he has no training in spinal deformity. It lists right there on the link that you provided that he does.

[rohrer01]

Here are some surgical guidelines from 2008.

http://www.scoliosisjournal.com/content/3/1/6

I would predict that even if your scoliosis is a cause for some of your pain (mine is painful, too), that surgery will not help this and may even make your pain worse.

[Davis]

thank you rohrer01, very informative.

[LynetteG]

I agree with all the others - please get another opinion from a scoliosis specialist - you will be glad you did in the long run. Another scoliosis doctor may well say to you to go ahead and have the surgery, but at least this way you'd know for sure, and perhaps have a better surgeon also to do the job.

[rohrer01]

But also, the possability of being corrected, to not have the constant feeling that I'm being ripped apart at the middle, to not have the aches and pains and burns, to resolve some of the deep psychological scars of being so twisted, to be able to wear whatever i want, the possability to feel ok in my own skin for once, to possably have a better quality of life. This is what pushes me into going for this. I know, in general, that surgery is not prescribed or recomended for this degree of curvature and I realise how major this surgery is. I'm just so torn. It's like all of my life I've wanted someone to be able to do something to fix this and when i finally find someone who says they can help, a million uncertainties burst forth.

We all want to be fixed from our deformity and pain. It's just that sometimes the risks outweigh the benefits. No one is taking this lightly. Your concerns are real. However, if you get advice from an SRS doctor, I can almost guarantee that they would not even think of surgery at this point. Believe me when I say that I know what the disappointment feels like. I have had severe pain since I was 16 and at 39 degrees. No one would operate on me either. Now I'm getting close to surgical territory in my 40's (age) and being that I'm over 45* there are some surgeons who will operate. Still, I can honestly say the vast majority of surgeons will still tell me to wait. A curve isn't even considered to be "severe" until it is over 40*. There is no risk for respiratory problems for you at this stage, unless something else is going on. My SRS doctor told me that respiratory function actually goes down after fusion. You have a mild and moderate curves. It's hard to live with, I know. But everyone on here has good intentions and you can see that the consensus is unanimous about you not having surgery. If the curve progresses to 45 or 50 degrees, then you can consider it. We are all more self-conscious about our appearance than what others notice. My husband didn't even know I had scoliosis when we were dating. Before I would consent to marry him, I sat him down and showed him my X-rays and explained that I have a lot of pain and asked him if he is prepared to deal with this for the rest of his life. I felt that my ribs stick out terribly and only now that he knows does he even notice it. Sometimes accepting our bodies and our pain (there are things that can be done for your pain) is the hardest thing to do because we all want to be normal. But whether we have surgery or not, we all have scoliosis and we all have some deformity. The medical profession can only do so much and if someone promises you something that sounds too good to be true, then..... Please, see another doctor and at least get another opinion. There are docs out there that, for whatever reason, money, prestige, experience, want to do unwarranted operations. Please don't fall victim.

[Davis]

I looked at the list Linda provided, searching for someone in my area and found nothing for Huntington WV or Ashland KY, I'm at my office right now but should have more time to devote to a search a little later on.

[lray]

...to not have the aches and pains and burns, to resolve some of the deep psychological scars of being so twisted, to be able to wear whatever i want, the possability to feel ok in my own skin for once, to possably have a better quality of life.

I totally understand where you are coming from. Most of us here have felt this way, at least at some point. Please see a scoliosis specialist, hopefully one from the SRS list, and get another opinion. The folks on this forum are very supportive and care that you make an insightful decision. Good luck to you, Davis.

[rohrer01]

I would look at the closest major city, otherwise look by state. Some of us have to travel. I have a friend that lives in the mid-west and traveled to California to go to a doctor she trusted.

[Back-out]

If, God forbid, you cut corners for convenience in choosing your first surgeon, I'm afraid you are apt to find your choices much more limited geographically and otherwise, to locate a qualified revision specialist.

Definition: "revision" = redoing a scoliosis operation which for whatever reason, was unsuccessful, i.e., led to more pain, a poor correction or other serious problem.

This is highly, highly specialized (and dangerous) surgery and often, as with so many delicate operations, you will find "fools jump in where angels fear to tread."

I suggest you glance over at the "Revisions' sub-forum for a cold shower.

[rohrer01]

Back-out,
I don't think Davis needs revision surgery. This would be a first time. Am I right, Davis? The doctor wants to fuse 29* and 11* curves.

[Davis]

Back-out,
I don't think Davis needs revision surgery. This would be a first time. Am I right, Davis? The doctor wants to fuse 29* and 11* curves.

yes that is correct, this would be my first ever surgery for this. The DR is talking about fusing a few vertabra in the thoracic area and in turn this should correct the secondary very mild lumbar curve.
But I am assuming that Back-Out may be suggesting to look at the revision forum for what may be in store if I make a bad decision from the beginning. At least that was how I was taking it.
Again, thanks to everyone for chiming in on this, 2,3,4 or more heads are usually better than one.

[jrnyc]

hi Davis
i am surprised the way you describe your body at the numbers you posted! i dont feel that "twisted" at 42 and 61 degrees...i mean, i am in severe pain, enough to force early retirement, but i never think of myself as "twisted"...unless i am joking around...then i just joke that i am "crooked"...
with the degree of pain you describe, i definitely would see a pain doctor...because no good scoli surgeon would operate on your curves...so that would be the option left...
also...there is NO guarantee that you would be pain free after surgery...i suspect you need to see several more surgeons to hear the truth! no good surgeon will promise you that you would be pain free after surgery...

best regards
jess

[Confusedmom]

Hi Davis,

Welcome to the Forum. I hope it gives you some help.

A couple things to consider: first, have you tried physical therapy? I've done it twice, and it greatly relieved my pain, though it took about six months each time. I had right pain at the sacrailiac (sp?) crest, as well.

Also, some pilates instructors are trained to help with scoliosis. I have seen photos of people who have actually improved their muscle tone and posture enough with pilates to make it appear that their curve got smaller (though it didn't actually). Massage can give temporary relief, as well.

Finally, on the cosmetic issue, I can definitely understand what you're feeling. I am badly twisted, too, and I think a lot of times that's actually worse than the side-to-side scoliosis curve itself. It makes the rib hump and in my case seems to make my abdomen appear uneven in the front. I went to try on swimsuits today and that was a bloody mess! If I could find one that fit in the front it always looks ridiculous in the back, etc.

However, I try to remind myself that though this is no fun, it could be a lot worse. At least I don't have breast cancer like some of my friends or something else that could be terminal. While scoliosis is no fun, it is something that we can live with and discover how to dress to our advantage. I truly do not think most other people notice, but if they do, I'm sure they don't think any differently of us. You must know people that have some physical problem, such as being overweight or prematurely gray or something. You just think of them as people, right? You don't mind their physical shortcomings. So I guess what I'm saying is I would hate to see you undertake this very serious surgery mainly for cosmetic reasons. Pain is a different story, but I hope you can get relief another way.

Evelyn

[Davis]

jrnyc wrote ...

i am surprised the way you describe your body at the numbers you posted!

It's very real to me and I'm very self conscious about it, have been most of my life. It seems as if the rotation has gotten worse in the thoracic area and has twisted me more and more throughout the years. Through the last few months it's mostly been the right sacroiliac/hip area hurting but more rescently, this odd tingling and the feeling that my left lower ribs (the left side of my sternum is extended) are lifting away from my body. Like the crest of my left lower ribs are trying to pull away from something that they may be attached to inside, pulling away from my innards. With this, my right shoulder cannot attain a natural position because of the thrusting back of the thoracic rib area "rib hump" on the right back side. I can pretty much feel the crests of my thoracic vertabra laying/pointing to the left.
And Confusedmom ...
I have tried different forms of physical therapy in the past, mostly yoga. The last time I ventured into that though was last November and after waking up in the middle of the night a few times, unable to move my thoracic area and in EXTREME pain I decided that it might night be such a good idea anymore. So that ended that. It seems that anytime I have taken something up to try to compensate or readjust different musculature it has always ended up making me feel a whole lot worse.
I do realise that there are those out there with a whole lot worse things going on healthwise and in this realm of scoliosis a WHOLE lot of people far worse off than I am and I have compassion for that but that still doesn't make me feel any better or make me feel okay with having what I have and living with what I have.
thank you everyone again for your honest input here. There's never too much of that.