Moderate? Really??

[Pooka1]

I posted this a while back. I think this case and yours have some similarities... might be of some interest.

http://drlloydhey.blogspot.com/2007/...scoliosis.html

[jrnyc]

Hi csc
dont know if you were asking me...but my shots are covered by my insurance...botox for my upper back is covered, as are steroid shots for lumbar epidurals, & sacroiliac, & facet block & nerve ablation also covered....i have not had surgery...yet...but i do know that people who have had & have not had surgery can be helped by pain management doctors...i see a pain doctor in manhattan, but there are pain doctors all over...

best of luck
jess

[cbeem]

Gosh, this is all so much information that I'm getting a little nervous. Who has the time to sort through it all?! Thank goodness for you!

Sharon, that article was FASCINATING. And, now I guess I can blame my tummy fat on my scoliosis too! Who knew? LOL.

An update for me right now is that I asked at PT how many more appts I had (for fear that the physiatrist didn't/wouldn't order me more)...I have like 20 to go or something, so I'm going to keep doing that for now. I also asked for a surgical consult with the orthopedic surgeon in this "spine group." The physiatrist is going to present my case to him and see what he has to say and if he thinks I might be a candidate for a CONSULT. Puh-leeeze. Whatever. I'm going to let him have his chat and see what he says. I wouldn't do anything here anyway. We live in southern NH, just a little over an hour north of Boston, so if I was seriously considering surgery of any kind, I'd head to Boston I'm sure. From what I've found online though, it looks like NYC and MD are the closest areas that have real scoliosis specialists. Is that right? I'm from LI, so NYC wouldn't be too tough.

And, yes..I AM going to join a gym. If for nothing other than a dip in the pool and a place to bring my 3-yr-old. I am so sorry JRNYC, that you are in such pain. I didn't even ask WHY the other options for pain management wouldn't work. I think he was getting at my issue is skeletal and not muscular--although--that's insane. I think I was just so shocked at him so politely kissing me off that I didn't know what to say. I'm also left wondering what the heck will happen when I have (what I call) another flare-up of intense, paralyzing pain. I don't want to be on drugs, but in those cases, I think a temporary prescription is warranted.

This PT isn't really helping with pain so much as strengthening. I feel pretty strong, but I guess I'm not at all! I would just love some more movement and some less pain.

Thanks again to you all. It's really cheered me to have this chat--and I've learned a bunch too. (Meanwhile, that sounds like a farewell, and I don't mean it to--just, thanks.)

Cristy

[jrnyc]

well, yeah, if you've got scoli, the issues are skeletal...but muscles & nerves are all involved...

i have been told that the only way to fix my problem is surgery...because nothing else corrects scoli..& it is not a cure...just the only way to straighten the back...no promises of pain free afterwards..just "less pain than before the surgery"...but while i stall...cause i need fusion to pelvis, which is waaaaay scary to me.... i use the pain doctors to help reduce the pain...when it works...some injections have helped me, some have not..but to me, it is worth the time & energy & minimal brief pain sticks to get any pain relief at all...

i think it is great that you are joining a gym! i loved it..until my pain got so much, i just couldnt go anymore, & was paying for nothing...i hope you enjoy your membership!

best of luck
jess

[dailystrength]

I'm actually joining a gym sometime this week or next. I feel like getting strong is all I can do--although I'm also trying not to put it so much on me, y'know? When I asked the physiatrist about the additional curve in my neck that wasn't mentioned he said that was just a compensatory curve. Shouldn't they measure that? They didn't take any side x-rays and didn't measure the twist of my spine at all. There is one point where it seems to me that it pretty radically twists. When I pointed it out (on the copy of the x-rays I brought with me), the physiatrist was pretty surprised by that and asked if I had ever had a trauma. Sheesh. (If I can figure out how to attach the upper thoracic x-ray I will)

Good for you for joining a gym. I don't know if I mentioned but this year I have started "the year of the back"- I am blogging how I feel and what I am doing, in hopes of tracking what works best. I think the strength training helped a lot, and now I am doing yoga and swimming last & this week. I feel like the swimming is opening up my midsection and I also feel I am able to sit taller. I agree about the neck curve- when I straighten up using muscles I feel it adjust into place. I found some good resources on a website that I'll attach. It seems no one has answers, but it doesn't stop me from trying. Since at even 49 degrees my Dr. is unwilling to do surgery, I am committed to doing all I can. Surgery is not a better outcome in the long term he said, believe it or not. He does a lot of research. I trust him. Anyway, best to you-- and do what feels good at the gym by the way-- it should be an outlet, not drudgery. I hope and pray you find some things that help. I did core with PT and then strength on the weight machines (using pulleys, to isolate the sides), then some soft tissue manipulation PT for my achy shoulder (it worked!), and of course now the yoga/swimming. I am learning to live with and love my back, and treat myself well. Don't neglect relaxation also. Here is that site: http://www.ctds.info/scoliosis_exercises.html
There is a more and more on the web also. I also like to just "hang" in the pool, for traction. Best to you.

[Syd]

Wow im glad that your brace worked that well ! so... you had a 60 curve and the brace decreased it to 30? well im shocked and happy ! How long did you have the brace on?

[cbeem]

I started wearing the brace around age 11. I was growing--a lot. I'm 5' 10"...I'd probably have been over 6' tall if I didn't have scoliosis. Anyway, My curves were somewhere around 60 and 30 at its worst I guess. Mom can't locate my childhood xrays and my dear old doc is now long retired. My curves are now at 38 and 34 (I'm 38 years old). But I went back to that doc when I was 21 because I started noticing that my body was changing in weird ways...indeed my curves were the same degree post brace, but they were in a different position...they actually moved down my back...weird.

Let's see...I still wore the brace at night when I started high school. I was supposed to wear it longer, but I brokered a deal with mom so I didn't have to wear it to high school. I went to Catholic school, so high school meant a bus to a different town where not EVERYONE would know me as the back brace girl, and I really needed that fresh start. I wore it at night for a long while.

Then, maybe around 16, my doc told me I'd have to wear it at night until I was 18--to be sure that I had finished growing. (I was, admittedly, a very late bloomer--I read some article through a link on here about that affecting the onset/degree/duration of changes of scoliosis.) At that point, I realized that if I wore it to 18, I'd be taking that plastic monstrosity to college with me. That was it. I never wore it again. Perhaps I was a bit young and rash. I later asked my mom why she didn't make me wear it after all that time and spending all that money. She said she figured I had had enough.

When I was in the brace I do recall lots of amazement by the doc that I was responding so well. One thing I remember them saying...and maybe this is silly...but I remember them commenting on how skinny I was. I was REALLY skinny--despite my best efforts! Ha! The doc said that I may be responding so well since the brace literally pushed right on bones and wasn't pushing fat around to get to the bones. I don't know if there's really anything to that.

I've been keeping up with PT, and even going to the gym. I tried Pilates...but there was a whole lot I couldn't do..next time I'm trying yoga. PT is going well though. So far, the best news is...the scale at the gym says I'm 9 lbs lighter than the scale at home! LOL!

Thanks for the support everyone!

[cbeem]

One other thing...I don't want to seem like I'm saying that you should be thin for a brace to work well. I honestly don't know if it has anything to do with the bracing results at all, but I probably shouldn't even have mentioned it. Us gals with scoliosis have enough body issues!

[aterry]

Thanks for the comment about being skinny. I realize your hesitancy but since body morphology (if that's a correct term) is one of the variables discussed it seems reasonable to wonder about this. My daughter is also skinny and I've wondered if that contributed to her problems. Wondering in a positive way is progress ;-).

[skevimc]

One other thing...I don't want to seem like I'm saying that you should be thin for a brace to work well. I honestly don't know if it has anything to do with the bracing results at all, but I probably shouldn't even have mentioned it. Us gals with scoliosis have enough body issues!

I'm not sure if there are any articles published on it, but I know the doctors I worked with through grad school all said that fatter kids (if you'll excuse the term) do not do as well in brace for the exact reasons you mentioned. It's all physics. If the brace has to push through an inch or two of fat before it hits anything solid then the affects the brace fit. And fit and correction are CRUCIAL to brace success.

Your x-ray looks like you have congenital scoliosis. Does this sound familiar? Basically means there is a deformation in a vertebrae and that has caused the scoliosis. The curve just looks really sharp and from what I can see it doesn't look like there is a bunch of rotation. The landmarks on the vertebrae used to measure rotation are a little difficult to make out though.

[cbeem]

Really?! Hmmmm....I was told that I had adolescent idiopathic scoliosis. That you say it looks "really sharp" interests me because that curve is measured around 34 degrees. (or is that one the 38?) It seems to me quite a sharp turn...and it DOES indeed rotate. It's hard to see here, but at that center point, it rotates SHARPLY. I thought it seemed rather sharp too. That's the part that I pointed out to the physiatrist--and that's when he asked if I'd ever had an injury. (I was in a car accident years ago--car totaled--but never went to the hospital at that time.) I wonder if I injured myself on top of my scoliosis...maybe at that center curve part it is more vulnerable?

I asked for a surgical consult, but the physiatrist "presented my case" to the orthopedic surgeon who said I was not a candidate for surgery with curves of only 38 and 34. I assume he showed him my x-rays (one would hope!) Anyway, they want me to keep up with PT and the gym and then get another xray in a year.

That xray is the thoracic one, I'll put the lumbar here.

[Jimbo]

Those curves look a hell of a lot larger than 34-38!

[cbeem]

Really?!! Okay, see this is what I thought. I'm so glad that you said that. I think I may need to go get a second opinion. We live up in NH...and I love my home and everything, but I'm definitely not seeing a scoliosis specialist at this point. I thought I would go, hear what they said, and then go to a Boston specialist if I needed it. Without my adolescent x-rays I thought maybe I need to wait a year and see if it's progressing to get the whole story right now.

[Pooka1]

I agree at least the upper T curve is much larger than stated. That is an interesting way to determine Cobb angle but it is obvious the lines are drawn in a way that significantly underestimates the angle. I agree with the other poster in that you seem to have a misshapen vertebrae at the apex which is accounting for much of the curvature. I'm guessing an experienced orthopedic surgeon specializing in scoliosis will say that is congenital, not idiopathic.

The lower curve is also underestimated largely because the top segment is obviously drawn wrong (not perpendicular to the vertebra edges). The bottom one appears close to correct.

The error on these measurements is clearly huge. Though the method is interesting, I'm guessing it is less precise and has more bias than the more common most tilted vertebrae approach.

[cbeem]

Thanks so much. When I went in for the x-ray, they took the front ones and said I was done...I said, "hang on! You need to do the side view." I mean, going ALL the time as a kid, I remember that. They asked the radiologist and even called the physiatrist, and said nope...they only needed the front. That made me suspicious right there.

Then, at the office, I even asked about the way they drew it and said that it didn't look like a Cobb angle. It looked like he weirdly traced along the spine! But, then I thought perhaps that's just the way they do it when the "write" it on the xray via computer....y'know...not like he took a pencil to it and drew out the curves. I thought perhaps there was a computer program he used for measuring the Cobb angles that drew it that way.

I'm really kinda nervous about the congenital part. I thought the apex of that curve looked pretty remarkable to me, and not at all like I remember in my childhood xrays. Hmmmm...anybody know a good scoliosis specialist in Boston I could drive down to?

Thanks, everyone. I really do appreciate your help. Maybe this is why my original post "moderate...really?" is funny....maybe it isn't at all, which would explain why the heck I am in a lot of pain all the time. I mean, I know you don't go to the Internet to get medical advice...we're all here to share what we know and search for information and support, but ideally you need a doctor of course...but I really appreciate your opinions since I thought the doctor's assessment seemed a bit fishy, but I didn't want to overreact and seem all gung ho for some surgery or something.