Moderate? Really??

[cbeem]

Hi everyone! I need some help. I'm 38 years old. When I was about 10, I was diagnosed with scoliosis. From what Mom and I can recall, I had curves of 60 and 30 at some point...I seem to recall though that at the end of a few years of bracing my worst curve was 30. Overall, I was happy with the results of my brace.

It's been 20 years since I have been to a doctor for my back. Pain and stiffness just seemed par for the course when options are surgery or pain medications--or so I thought.

I finally can't take the pain anymore. At the end of the day I'm completely stooped over. I went to a physiatrist and I just had x-rays done...a high curve (like between the shoulder blades) of 34 and a low curve of 38. I'm starting physical therapy on Wednesday.

Can anyone give it to me straight? The doc said we'll try this therapy, but it's pretty likely that at some point I may need some surgical instrumentation. I know everyone is different, but it feels like I'm in an awful lot of pain...and I'm quite "curvy" for someone who only has "moderate" scoliosis. This seems pretty serious to me.

I'm a really up, happy person, but I'm just SAD about this. I feel like the road ahead is a painful one. I am not a complainer, but I can't get over feeling like no one understands how much pain I'm in and even the x-rays make it seem rather unremarkable.

I'd really love to talk about this to anyone out there. Despite a fantastic hubby, I'm feeling pretty bummed out about this, and it would be nice to hear from someone who understands.

Thanks!

[txmarinemom]

Welcome, Cbeem.

My pre-op story sounds exactly like yours, even down to the age of diagnosis and bracing.

I lived with back pain my entire life: It literally felt as if my shoulder blades were being pulled in opposite directions. I had cervical discs above my structural curve that were perpetually protruded ±3mm. I tried every tool in the traditional (and not so traditional) pain management arsenal. Out of desperation, I finally began to investigate surgery at 39.

While we all make our decisions for our own reasons, I can tell you this: Not for one single minute have I regretted my surgery. Sure, I was in a different kind of pain when I woke up after the procedure, but it was immediately evident the all too familiar pain that had been my lifelong companion was *gone*.

Physical therapy is a good first step, and I'd recommend you find a reputable pain management doctor (they're usually anesthesiologists) if you haven't yet. Definitely see one before you even consider surgery as an early option for such a small curve. While a lot of people think all a PM doctor will do is prescribe meds, that isn't the case.

Procedures like rhizotomies (RF ablation ... the medial branch nerve that carries pain impulses is burned) can work miracles for some people. As can facet joint injections, nerve root blocks, epidural steroid treatment, etc. etc.

Acupuncture works for many people. Myofascial release, deep tissue, a/shiatsu and trigger point therapy can have substantial effects.

I know how badly scoliosis can hurt. If I understood your post correctly, however, it would seem you have a lot of treatment options to try before you need to consider (or even worry about considering) surgery.

Hang in there ... it's going to be okay - one way or another. :)

Best regards,
Pam

[cbeem]

Thanks. I really appreciate it. I think I'm onto a decent approach--it's a group of spine specialists in New Hampshire--they've got all sorts of docs and do some of the alternative things you mentioned. You're right...lots to consider before I get ahead of myself and worry.

It just feels like it's a "such a small curve" as you say and yet I feel like my life is not my own.

Thank you. I'm looking forward to spending some more time on the forums and learning more.

[txmarinemom]

It just feels like it's a "such a small curve" as you say and yet I feel like my life is not my own.

When I said "such a small curve", I only meant it in the context of surgery. Criteria for adult surgery is typically a ±50° curve with documented progression: Some surgeons (not all) will consider fusing a stable curve like mine that held at 48-53° my entire adult life. Generally speaking, ±38° is not a curve many surgeons would fuse - although that isn't set in stone.

I definitely didn't mean to minimize the effects of your curve, and especially the pain it can cause. My back hurt virtually from my diagnosis at 10, and living with it all those years makes your sentiment "my life is not my own" ring very familiar: You live through the pain, but it's *always* there ... day in and day out.

People just don't understand what you go through every day because you DO go on and live your life. They don't understand that you can hurt that badly and still function. They don't understand it hurts equally whether you choose to live, or curl up in a ball. They simply have to point of reference to understand, but I do understand. You aren't alone, even though it may seem so.

It's impossible for me to even explain how shocking it was when my pain vanished, and I'm hoping your future holds that same weird, wonderful disbelief.

I'm excited at the multitude of options you have ahead of you. It may sound crazy, but you're actually in a good place. Have faith, and keep us posted! :)

Best regards,
Pam

[jrnyc]

Hi Cbeem
welcome to the forum....although i guess folks would rather not need it(if they didnt have scoli), but thank goodness for it!
i have not had surgery...yet...i have a 40 degree thoracic & 61 degree lumbar curve...i have rotation...& spinal stenosis...& degenerative disc disease (herniated discs 5 years ago started a downhill slide!) & severe arthritis of the spine....

i go to 2 really good pain management doctors...botox shots control the pain in thoracic area, cause it freezes the muscles so they cant spasm or bunch up....not too much has helped the lumbar, where my severe pain comes from...have had epidurals, facet block, nerve ablation & sacroiliac shots...the sacroiliac shots worked best for me, but i think it just depends on the doctor finding the right spot, where most of the pain is originating from....the facet blocks & nerve ablation helped for a few months...the epidurals not much....but then again, all these measures give temporary relief at best...i have never had relief for more than a few months, & am grateful for that! the botox shots last the longest...about 3-4 months....acupuncture never helped my back...nor did P.T., though i didnt find one with scoli experience...have been given a name of one in nyc that i may be investigating...but i dont have much faith in P.T. for my situation....i also dont have much faith in chiros...though i think some people do....

i would strongly suggest you seek out a good pain management doctor....just a consult alone might be helpful to see what they think they can help you with.....

best of luck
jess

[dailystrength]

Hi Cbeem,
Thanks for writing. Living with scoliosis is a long and often confusing road, of trying to find out what works, and there is always the looming question of surgery. I am 34/49 as of last May and will find out in May how I've held, improved hopefully, or hopefully not progressed. I have become best friends with the gym - I am there at least 4 days a week. I have a wonderful gym that offers strength/core machines, yoga, swimming, sauna, whirlpool, etc. I have really availed myself of all it has and I am just today encouraged that I have discovered how to "pull up" out of my left lumbar "bending". Yes, it's scary and the x-rays will tell the truth, but I have gone from unbearable pain that prevented much home activity besides my office job, to no pain, no med (I have a NSAID Rx if needed). PT got me started, the excellent gym trainer good with backs took over, and I am pretty encouraged. As they seem to wonder if the risks outweigh benefits of adult scoliosis surgery these days (my Dr is a researcher also in the SRS), I am dedicating this year to living with and loving my back. Thanks for sharing, again. We need each other! --Christina

[dailystrength]

Chbeem, hi again. I wanted also to encourage you that you have not drifted that far from the progress you made after the brace years. I had a Boston brace for a year in high school (that was all I could take) and my curve reduced at that time from lumbar 34 to 19. Like you, I did not follow up for quite some time. At 20 years, I had an xray done in a major city and was told that "they don't measure curves anymore" and they sent me home with no follow up. Due to increasing pain, I sought all kinds of treatment for the next 8 years to no avail. I finally ordered current xrays, and come to find out, those previous xrays showed 34 lumbar with degeneration(the Dr. measured that one also when I came in for my recent xray). My current curve also now showed 49 lumbar PLUS 34 thoracic). I was sick over it. Anyway, this is just to encourage you-- I am now virtually pain-free due to my exercise regimen, even at that curve level. I did a lot of core strengthening along with spinal stablization exercises, and I had some soft tissue manipulation done on my upper curve symptoms (shoulder/neck/face tightness & pain). I have a TENS unit. I work out faithfully. I hope to never have to need surgery. I hope you find success!

[cbeem]

Thanks, all. I really appreciate your stories and support. I started PT. I had to finally tell them that they need to do more with me because if they wait until I'm not having any pain, it'll be a LONG wait.

Christina, 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?

I went back to the physiatrist. I think I need a second opinion. I mean, I don't WANT surgery, but I want to fully assess where my curves are right now. (Mom swears that she gave ME my childhood x-rays years ago, but they are certainly somewhere at her home...ugh) They only did front-facing x-rays. And the diagnosis was: A T2-T7 thoracic levoscoliosis is present estimated at 34 degrees. A T8-L2 dextroscoliosis is present estimated at 38 degrees.

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)

He also said injections, accupuncture...all the other things that they had toted as options...wouldn't help me. So, basically he wished me luck and said I should join a gym and learn to swim.

I'm feeling a little abandoned, but I also think well...I don't want surgery, so what do you want? A cheerleader to say it will be okay? I don't know. As of now, I'm joining the gym. They have a pool there. And daycare! :) And, maybe I will even learn to swim correctly. I'm also considering calling a specialist down in Boston to get a more thorough diagnosis so that I have something to work with and can check back to see if things have progressed or maintained.

Thanks all. It's so comforting to talk to someone else about this--someone who knows.

[Pooka1]

Chbeem, hi again. I wanted also to encourage you that you have not drifted that far from the progress you made after the brace years. I had a Boston brace for a year in high school (that was all I could take) and my curve reduced at that time from lumbar 34 to 19. Like you, I did not follow up for quite some time. At 20 years, I had an xray done in a major city and was told that "they don't measure curves anymore" and they sent me home with no follow up. Due to increasing pain, I sought all kinds of treatment for the next 8 years to no avail. I finally ordered current xrays, and come to find out, those previous xrays showed 34 lumbar with degeneration(the Dr. measured that one also when I came in for my recent xray). My current curve also now showed 49 lumbar PLUS 34 thoracic). I was sick over it. Anyway, this is just to encourage you-- I am now virtually pain-free due to my exercise regimen, even at that curve level. I did a lot of core strengthening along with spinal stablization exercises, and I had some soft tissue manipulation done on my upper curve symptoms (shoulder/neck/face tightness & pain). I have a TENS unit. I work out faithfully. I hope to never have to need surgery. I hope you find success!

I'm glad you posted about how PT controls your pain. We don't get too many testimonials like that but I think it happens more than you can tell from the testimonials.

As to your bracing, I think it was expected to return to the pre-brace angle of 34*. But what is amazing I think is that you held at that angle for 20 years and then progressed 15* in the next 8 years if I understand your time line.

This is yet another case of a curve (34* at maturity) that isn't supposed to progress to near surgery territory but still does.

Good luck.

[aterry]

jrnyc, who is the PT in NYC that has been suggested to you? My daughter has been going to a PT for pain. It helps a little but the PT is not a scoli specialist. Send a private message, if you'd rather.

[hikerchick]

Hi cbeem,

I don't post often but wanted to say hello and tell you that you are definitely not alone! I am 39 and we have very similar stories. Looking at me, no one could ever tell that I have scoliosis and I really don't talk about it with anyone. Sometimes I am in pain all of the time, sometimes I can go weeks and be fine. I am very active and that has helped a lot with pain. I am wanting to get into swimming this year as well because it may help, or it may not. Yoga has helped me a lot, as well as weight training and staying on the lean side. I have two little girls, my youngest just turned 3 and I know my pain will lessen when I'm not picking her up so much.

It is frustrating not being able to do things that other people can for me (I finally gave up running a few years ago), but I try to stay positive and figure everyone has something physical that gives them grief. Mine just happens to be scoliosis.

Feel free to pm me. I don't have any friends in real life with scoliosis so it's nice to be able to talk to someone that can understand the frustration.

Oh, I also wanted to add that I have been seeing a physical therapist for the last 10 years. I have major pain when my joints are out of alignment (SI joints mostly) and the pt can put them back.

[jrnyc]

Hats off to anyone who can join a gym!! i just quit mine after not being able to go, due to pain, for over a year!

i would not take a physiatrist's word...would get another opinion...i dont know about no shots helping...why not? did this person say exactly why? is it the location of the curve? or the degree? or what...? since the botox takes care of my thoracic pain for now, i am thrilled...just wish something could help the lumbar as much! but i will have facet block & sacroiliac injections jan 18th, first time since 2008...we will see how much that helps...since i am going to see dr anand on a 6 hour each way trip to CA on january 25th.....i sure hope the shots help!

jess

[csc]

Hello!
You might have said in an earlier post- but where are you going for the shots and what is the cost? I am still experiencing annoying thoracicger two years after surgery. Doc said it might be due to scar tissue.
Thanks!

[csc]

Biker Chick,
Should have enclosed this in the earlier post but it's early here in Arizona. At least that's my excuse and little sleep. My pain did not start until my early 40's. Put off surgery for as long as possible with waiting for my children to grow up and the doctor's advice. Started working out at Curves five years ago before surgery. It really helped physically and emotionally. Increased my leg and core strength, flexibility,and made me feel like I had some control. Worked out the day before surgery! I'm still continuing with it. I kept walking as much as possible- where I live it's more like hiking. Lots of ups and downs with mountains and hills. There are days when it's painful and then I go slower or don't do quite as much. My point is every bit of exercise helps.
I will need a second surgery but will try to put it off as long as possible. Don't want to lose my remaining mobility in the lumbar region. It's a constant battle as far as I see it. Just hoping for a pain-free day again! My understanding is that a lot of people do after surgery. Just wasn't one of them. Oh, well. If you look around you most people have some type of cross to bear.

Take care!

[dailystrength]

As to your bracing, I think it was expected to return to the pre-brace angle of 34*. But what is amazing I think is that you held at that angle for 20 years and then progressed 15* in the next 8 years if I understand your time line. This is yet another case of a curve (34* at maturity) that isn't supposed to progress to near surgery territory but still does.

Hi again. Yes, I am reading up and doing all I can to help myself- last year I ordered tons of books from half.com and such i.e. Back Care Basics & Structural Yoga Therapy. Since I have dedicated this year to focusing on my back, I am going to start a journal in my blog to track the progress. I feel in a way it is a mind/body battle, and I did some relaxation exercises from SYT yesterday to help ease the anxiety of muscle tension and vice versa.

Anyway, I wanted to reply that yes, the time frame you thought was correct. In '78 I was diagnosed with 34 lumbar and in '80 I was stable at ~20 after the brace; in '00 I was still 34 (fairly stable) but in '08 I was 49 lumbar & 34 thoracic, a progression of 15 degrees in 8 years. One specialist I saw (from Scroth training persuasion) last year pointed to hormones as the culprit as it was the beginning of "the change of life" --much as hormones at the first "change of life" occur when it begins. Interesting... so many theories. Thanks for commenting on this, btw. I was overcome with emotion when I learned of my current angle, and know that more awareness needs to happen. I think we are getting there slowly. Scoliosis cannot be ignored.

[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/2007/09/29-yo-woman-with-progressive-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?
:confused:

[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.

[cbeem]

I DO have my first 2 xrays before I ever wore a brace...like 10 years old, curve at 10 degrees, then 12 curve much more--those are from the doc I went to before MY scoliosis doc. Do you think those could help see that the top curve didn't (at least that I can see) have a congenital defect at one point?

Unfortunately, mom can't find the really important xrays during and after the bracing. Blerg.

[mamamax]

I'm no expert - don't know that we actually have any here. I believe there is more than one method of measuring and that measurement interpretations may vary from one person to another (and even from one true expert to another)?

Ask 100 people an opinion - you may get 100 differing opinions :-)

This is precisely why I have decided to not post my xrays. Though I may change my mind one day.

cbeem - just curious ... who measured your xrays and can you obtain the written radiological report?

[Pooka1]

I DO have my first 2 xrays before I ever wore a brace...like 10 years old, curve at 10 degrees, then 12 curve much more--those are from the doc I went to before MY scoliosis doc. Do you think those could help see that the top curve didn't (at least that I can see) have a congenital defect at one point?

Unfortunately, mom can't find the really important xrays during and after the bracing. Blerg.

Any and all radiographs from the past will be important for the reason you state and also in estimating progression rate (if any).

And by the way, this not being my field, I can't see anything wrong with the shape of any vertebra. I'm just surmising there might be something based on the seemingly small number of vertebrae involved in the curve.

[Pooka1]

I'm no expert - don't know that we actually have any here.

Yes we do... we recently had a legit researcher start posting.


Ask 100 people an opinion - you may get 100 differing opinions :-)

That overstates the situation with Cobb angle measurements as far as I can tell.

[mamamax]

Yes we do... we recently had a legit researcher start posting.

Yes, but said researcher is not necessarily an expert radiologist, etc ... correct?




That overstates the situation with Cobb angle measurements as far as I can tell.

And here I thought it was an understatement!

[Pooka1]

Yes, but said researcher is not necessarily an expert radiologist, etc ... correct?

There is no evidence that measuring Cobb angles is rocket surgery. If you do it the "long" way rather than by eye, extending lines out from the surface of each vertebrae, there is very little room for error on vertebrae selection. Now there is likely professional opinion about whether to include a particular vertebrae in a curve measurement perhaps due to rotation or something.

Maybe McIntire will comment on this and whether he measured the Cobb angles in his studies or whether he relied on radiologists or surgeons. I would especially be interested in hearing his opinion on the intrinsic degree of difficulty of doing a Cobb measurement (as opposed to interpreting it) compared to, let's say, doing a controlled study in the field of PT or bracing. :)

[mamamax]

There is no evidence that measuring Cobb angles is rocket surgery.

Well I dare say - it takes a greater understanding than most of us have.

Here's a good example:

http://www.orthosupersite.com/view.asp?rID=24348

[Pooka1]

Well I dare say - it takes a greater understanding than most of us have.

Here's a good example:

http://www.orthosupersite.com/view.asp?rID=24348

Again, that is not rocket surgery. Everyone here could do those measurements on a radiograph. It is very understandable (and interesting) and you could do that measurement yourself.

Note the caveats.

[mamamax]

Everyone here could do those measurements on a radiograph. It is very understandable (and interesting) and you could do that measurement yourself.


I disagree - I don't think everyone/most here could do those comparative measurements. And one thing I noted from that referenced article was - that readings varied among three different readers.

Maybe this would be easy for you Sharon? I would be interested in your applying both methods outlined in the article to the xrays presented in this thread - as a "test" only of the methodologies - and certainly not an expert interpretation. Could you really write it up the same way as this article does? Would you? I still think most of us could not - with any degree of true accuracy.

Referenced article: http://www.orthosupersite.com/view.asp?rID=24348

[Pooka1]

[COLOR="Navy"]I disagree - I don't think everyone/most here could do those comparative measurements. And one thing I noted from that referenced article was - that readings varied among three different readers.

Maybe this would be easy for you Sharon? I would be interested in your applying both methods outlined in the article to the xrays presented in this thread - as a "test" only of the methodologies - and certainly not an expert interpretation. Could you really write it up the same way as this article does? Would you? I still think most of us could not - with any degree of true accuracy.

I suggest you disagree and think this is difficult out of a lack of trying to do it yourself.

They are taking the most tilted vertebrae (as determined using those parallel line segments I mentioned) plus one above and below. It is not rational to claim most here can't do that much. Don't let this blow your mind. Boil it down.

[mamamax]

Boil it down.

ok lets boil it down ... and lets look to you to do that since you find it "easy". Using both methodologies - what are the measurements that you come up with (along with stated justification) in reference to the xrays shared in this thread? Again - as an interpretation, rather than expert opinion - and a practical demonstration of how easy it is.

[Pooka1]

ok lets boil it down ... and lets look to you to do that since you find it "easy". Using both methodologies - what are the measurements that you come up with (along with stated justification) in reference to the xrays shared in this thread? Again - as an interpretation, rather than expert opinion - and a practical demonstration of how easy it is.


I will do that if you tell me how you will be able to judge the ease and accuracy of my numbers? We don't have accurate professional measurements on those radiographs as they appear clearly underestimated. So how will you assess my measurements?

I hope McIntire comes on to edify either me or you. This is getting a bit rarified let's say.

[mamamax]

I will do that if you tell me how you will be able to judge the ease and accuracy of my numbers? We don't have accurate professional measurements on those radiographs as they appear clearly underestimated. So how will you assess my measurements?

I hope McIntire comes on to edify either me or you. This is getting a bit rarified let's say.

Firstly - I would look for you to completely disregard any previous measurement. Next - apply the same two techniques outlined in the article - along with the mathematical calculations/equations used for each method (referenced please).

Best if you have a photo-editor and can post the drawings (as shown in the article).

How would I assess the measurements (personally)? I'd check the references containing the mathematical formulas - and then check the calculations.

Asking a lot of you Sharon, I know - but for sake of demonstration of how easy it is do do these things ... a good thing, I think.

[Pooka1]

Mamamax, I am confident you can do this. Take one of your radiographs or one online with a single curve.

1. Cobb angle determination:

Here is how to measure Cobb angle from a post Susie*Bee made a while ago...

http://www.pediatriceducation.org/2006/12/11/

2. Centroid method:

Look at the diagram and follow that method.

Now compare the two measurements.

Now again, I am not claiming there isn't some professional opinion involved at some points in this but I am saying most tilted vertebrae, most tilted vertebrae plus one, and the relevant angles can be determined easily. Translating that to a prognosis and bringing in rotation and other aspects is pro territory.

[Pooka1]

I'd check the references containing the mathematical formulas - and then check the calculations.

There are no mathemathical formulae. It is being able to:

1. identify the correct vertebrae (use the extended line analysis if necessary)
2. drawn straight lines with rulers
3. use a protractor

I know for a fact you can do these things.

[mamamax]

Mamamax, I am confident you can do this.

Your confidence in me (in this area) may be a bit misplaced :-)

I fear I may have spent too much time in Missouri - I'm a show me (don't tell me) kind of gal.

And while I like the links you posted, I'm more interested in doing an easy comparative analysis of the methods found here: http://www.orthosupersite.com/view.asp?rID=24348

You said you would do that if I explained how I would interpret it - which I did. Have to say, you got my hopes up!

[Pooka1]

And while I like the links you posted, I'm more interested in doing an easy comparative analysis of the methods found here: http://www.orthosupersite.com/view.asp?rID=24348


My suggestion IS an "easy comparative analysis."

That link needs a login. Can you post the material?

[Pooka1]

In terms of "show me," you can show yourself by trying this on your own radiographs. See if your measurements agree with the surgeon's measurements. Knowledge is power.

[mamamax]

My suggestion IS an "easy comparative analysis."

That link needs a login. Can you post the material?

The information on the front page (no login required there) I think, would suffice for our intended purposes here.

http://www.orthosupersite.com/view.asp?rID=24348

[Pooka1]

Nope all I get isa login screen... here is a (jumbled) copy/paste of the entire screen that will copy/paste...

-----------

Orthopedics SuperSite Orthopedics Today Orthopaedics Today International Orthopedics
Advanced Search Login to ORTHO SuperSite

To access this Web site for free, please register for the ORTHO SuperSite.com


Not an Ortho SuperSite member yet? Already an Ortho SuperSite member?
Get Free Access

Register for ORTHO SuperSite.com

* Daily news
* Advanced search engine
* Weekly podcasts
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* Thousands of peer-reviewed articles

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Log In Now
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---------

The rest is just blue screen

[mamamax]

In terms of "show me," you can show yourself by trying this on your own radiographs. See if your measurements agree with the surgeon's measurements. Knowledge is power.

Dear God! (oppps, sorry) ... No - I am not going to pit my knowledge base against my surgeons' (at this point hee hee). OMG I can just see his reaction (and subsequent private notes)! But you do give me an idea - maybe I'll ask him for the easy comparative analysis ;-) Though I can hear him saying .. You should not be so concerned with these things. Too bad - I am!

[mamamax]

Nope all I get isa login screen... here is a (jumbled) copy/paste of the entire screen that will copy/paste...

-----------

Orthopedics SuperSite Orthopedics Today Orthopaedics Today International Orthopedics
Advanced Search Login to ORTHO SuperSite

To access this Web site for free, please register for the ORTHO SuperSite.com


Not an Ortho SuperSite member yet? Already an Ortho SuperSite member?
Get Free Access

Register for ORTHO SuperSite.com

* Daily news
* Advanced search engine
* Weekly podcasts
* Meeting coverage
* Thousands of peer-reviewed articles

Register Now!
Log In Now
First Name:
Last name:
E-mail:

---------

The rest is just blue screen

That's wierd! What is your operating system and what browser are you using? No trouble here with Mac OS Tiger 10.4.7 (or eight - can never remember) & Firefox (latest version).

[Pooka1]

That's wierd! What is your operating system and what browser are you using? No trouble here with Mac OS Tiger 10.4.7 (or eight - can never remember) & Firefox (latest version).

Did you register at any point?

[mamamax]

Did you register at any point?

No. I could email you the page (there is a link for that) - send a PM if you would like me to do that.

I was able to save it as a PDF file, but once again our sharing ability here is too limited to post.

[Pooka1]

I just want to point out (again) that there is a difference between measuring an angle using the common approach or the centroid approach and interpreting or tweaking that angle.

My claim is ONLY that measurement using either of those approaches does not have a steep learning curve.

Interpreting it amidst all the other considerations is pro territory.

I suspect this distinction is being lost in the fray.

[mamamax]

Well, really my original quest was to find an easy way to measure cobb angles. I'm not sure yet that this exists. Sorry we can cannot share the original article - I don't know why I have some special access to it.

I went looking for a similar article. Was a bit floored by what I found over at the Scoliosis Journal - six different methods of measuring degree of curvature.

http://scoliosisjournal.com/content/3/1/16

Can we choose one of these methods for purposes of our discussion? And are you able to see this article in its entirety?

[Pooka1]

Well, really my original quest was to find an easy way to measure cobb angles. I'm not sure yet that this exists. Sorry we can cannot share the original article - I don't know why I have some special access to it.

I went looking for a similar article. Was a bit floored by what I found over at the Scoliosis Journal - six different methods of measuring degree of curvature.

http://scoliosisjournal.com/content/3/1/16

Can we choose one of these methods for purposes of our discussion? And are you able to see this article in its entirety?

These are not ways to measure curvature. They are ways to measure rotation.

[cbeem]

Funny that the conversation turned this way because when I first got those xrays I thought the way the radiologist drew the lines on the curve seemed wrong. I looked up how to do the Cobb measurement. I actually am a doctor--but of English! LOL! I only have a cd of the xrays, so there I was with paper up to the screen trying to draw lines with a ruler and a pencil on paper--needless to say, I couldn't really do much with that. :)

It did seem pretty simple to do the Cobb measurement--draw the lines out from the top and bottom until the lines meet and then measure the angle--but yeah, maybe I should have called on one of my engineering students or something to help me! LOL. For now, though, I do feel that the xrays don't take the rotation into account and don't seem to reflect the severity of how I feel even if it is the right number on the measurement--and it is a bit validating to hear others say that it doesn't look like a simple 34 degree curve. At the least, you've all encouraged me to get a second opinion. Thank you!

Cristy

[Pooka1]

A doctorate in English is overkill for measuring Cobb angles. In my opinion.... you are OVERqualified. :D

Another approach is to find some radiographs on line that are of known 34* and 38* curvature and see if they resemble your curves. A complicating factor here I think will be the relatively small number of vertebrae involved in your upper curve... you might have a hard time finding a radiograph like that and eyeballing between a curve with a large versus small number of involved vertebrae might be hard to do per se.

I wish you luck. :)

[mamamax]

These are not ways to measure curvature. They are ways to measure rotation.

I noticed that - so now I have a new question. Is rotation a factor that should be considered in an accurate measurement of one's condition ... for purposes of treatment recommendations?

Yes I know - and apologize - I ask too many questions. Guess it would not surprise anyone to hear I was tagged as precocious in childhood :-)

And I guess I'm just dumb as a rock - I still cannot see any easy way to challenge the measurements of a surgeon - or - someone with more knowledge of this than myself. *faints*

[loves to skate]

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.

To answer your question about a good scoliosis specialist in Boston, Dr. Frank Rand is an excellent choice. He specializes in adults, degenerative conditions and other spinal abnormalities. He is at the New England Baptist Hospital. He is very kind and caring and confident without being the least bit arrogant. It takes awhile to get an appointment with him because he is so busy, but just be persistent. There are a couple of other specialists in Boston, but I have no first hand experience with them. You probably can find them on the SRS website.

Take care, Sally

[cbeem]

mamamax...you should always challenge if you have questions! My dear friend just brought her son in for surgery (not scoliosis, something else) anyway, it was Mom who reminded the surgeon that since they were only doing one hip, the cast on the other leg needn't come all the way down the little guy's leg. I mean, that's a big thing when a 2 1/2 year old will be in a body cast for a month and a half.

My point is, that even with the best doctors in the world, our health (and the health of our children) is most important to US. I'm not happy with the explanation of my x-rays, or my x-rays (I mean, without a side view they can't even tell about the natural curve of the back from back to front--and I believe that my back is flatter than most so there was no evaluation of kyphosis or lordosis--I think I've got those terms right), so I am going to challenge the radiologist and get another opinion.

When I was a kid, they "noted" the rotation, but it was never one of the measurements they took. But hey, that was quite a while ago now. I would imagine that the twisting of our spines would have a large impact on our spine health. So, while measurements of these twists may be new or not even widely done, it concerns me that side x-rays weren't taken to determine progression of the twist later.

Now I'm completely convinced that I need to get the opinion of a specialist. I just wish some offices were open TODAY so I could call! Now I'll have to wait until Tuesday! :) I was really hoping to find out the whole story before my new semester starts, but I've waited this long so a couple of days shouldn't kill me!

[cbeem]

Thanks, Sally!

-Cristy

[mamamax]

Now I'm completely convinced that I need to get the opinion of a specialist. I just wish some offices were open TODAY so I could call! Now I'll have to wait until Tuesday! :) I was really hoping to find out the whole story before my new semester starts, but I've waited this long so a couple of days shouldn't kill me!

Agree with all you have said - and this (seeking an opinion from a scoliosis specialist) a wise move on your part. Best of Luck!

[Pooka1]

I noticed that - so now I have a new question. Is rotation a factor that should be considered in an accurate measurement of one's condition ... for purposes of treatment recommendations?

I'm guessing it is. Of course that doesn't change the fact that surgeons are using the same techniques to measure curvature that are readily available to you.


Yes I know - and apologize - I ask too many questions. Guess it would not surprise anyone to hear I was tagged as precocious in childhood :-)

Never apologize for that. Precocious is good. Thinking is always in order and you do a lot of thinking in my opinion.


And I guess I'm just dumb as a rock - I still cannot see any easy way to challenge the measurements of a surgeon - or - someone with more knowledge of this than myself. *faints*

You are clearly not as dumb as rocks for heavensakes. And you are NOT challenging the surgeon's measurements by measuring the curves yourself. You very likely will get a very similar measurement.

Again, just to make this as clear as possible, the Cobb technique and the centroid technique are purely graphical analyses. That is, you get the answer from drawing lines and measuring angles, NOT making a single calculation or using a single formula. Is that clearer?

ETA: It is fair to say that a person adept at mechanical drawing or an artist will get a more precise, less biased result using a graphical technique than many other folks with more medical training.

[mamamax]

Thanks Sharon :-)

You know - it's not all that a precise science when the error rate is +/- 5 degrees either way. That's on the list of things that bother me. Along with the fact that curves themselves may present differently from morning to afternoon/evening.

I agree - the observant artist may be most precise. :cool:

[hdugger]

Tangentially related to this discussion, I have routinely had the experience of a greater-than-the-margin-of-error difference between my son's xrays.

So, my first doctor re-measured one xray almost 12 degrees higher because he selected a different vertebrae the second time.

A second dr, looking at the same xray, measured it 7 degrees lower.

My new dr re-measured one of my son's old xrays 6 degrees higher (not sure of the reason)

And, for his latest xray, the radiologist measured the curve as 48 while our doctor measured it as 57.

I'm not certain why we're seeing this amount of variability, but it does make it very hard to figure out whether the curve is stable or progressing.

[Pooka1]

Tangentially related to this discussion, I have routinely had the experience of a greater-than-the-margin-of-error difference between my son's xrays.

So, my first doctor re-measured one xray almost 12 degrees higher because he selected a different vertebrae the second time.

My new dr re-measured one of my son's old xrays 6 degrees higher (not sure of the reason)

And, for his latest xray, the radiologist measured the curve as 48 while our doctor measured it as 57.

I'm not certain why we're seeing this amount of variability, but it does make it very hard to figure out whether the curve is stable or progressing.

I think the claim (and hope) is that using the same vertebrae, the inter-operator error won't be larger than +/- 10*.

My personal opinion as to why the large variability is sloppy drawing of lines. I think the thought is that it is "close enough"and maybe it is. But I still claim that a person adept at CAD would probably do the best job not only of selecting most tilted vertebrae but also drawing accurate lines.

Larger errors are expected to ensue when different vertebrae are selected. The idea that different vertebrae can be selected by various surgeons blows my mind as the principle at least is straightforward - most tilted vertebrae. I guess there are cases where two vertebrae may appear most tilted but I think in that case, using either should return the same angle. I'd have to check that though.

But we can see from the Hawes more recent publication that there are other factors being considered when doing this graphical analysis. Recall that the blinded readers reported a much lower Cobb angle compared to the non-blinded readers. That went by in the discussion without comment for some reason. I think the reason would be edifying to our present discussion.

[Pooka1]

Tangentially

By the way, I wanted to congratulate you on using this word in the present context. Very clever. :)

[skevimc]

Hi there,

I have never seen that vertebral centroid measurement method before. It's an interesting finding when compared with Cobb's method.

To answer the earlier question about my expertise :). Yes I have measured the Cobb angle many times. I have dome quite a bit of measurement looking at various x-rays. If given the x-rays and a pencil I feel confident I could do it in person. Doing it on the computer is a bit different. I measure the upper thoracic curve at 43° and the TL/L curve at 34°. DISCLAIMER:!!!! I am not a clinician!!!! Please disregard everything I have written. :)

To me it looks like they might be trying to use the vertebral centroid method. The bottom curve looks good but the upper curve looks like they miss the centroid on the lower half. That is, the bottom line isn't going through the centroid of the lower two vertebrae. So it looks like the measurement is too narrow. Hopefully that makes a bit of sense.

I can see the rotation better when I adjusted the contrast levels a bit. I can't measure the rotation because that requires a special type of ruler.

I don't see any obvious deformations in the high thoracic curve, ~ T3-4. But it still looks to me that T4 is a bit wedged. The high thoracic compensatory curves, I don't think, usually look that sharp. Idiopathic curves tend to have an obvious gradual curvature. But to me, the vertebrae look straight and then at T3, the spine changes direction. :confused:

Anyway, it might benefit you to go see a spine doc. I don't know that it would/should change your treatment, but it's always nice to have a diagnosis that you trust.

DISCLAIMER AGAIN!!!! I am NOT a clinician. I am just giving you my thoroughly unqualified opinion!! But it does look like they have made at least one measurement error.

[mamamax]

Hi there,

I have never seen that vertebral centroid measurement method before. It's an interesting finding when compared with Cobb's method.

To answer the earlier question about my expertise :). Yes I have measured the Cobb angle many times. I have dome quite a bit of measurement looking at various x-rays. If given the x-rays and a pencil I feel confident I could do it in person. Doing it on the computer is a bit different. I measure the upper thoracic curve at 43° and the TL/L curve at 34°. DISCLAIMER:!!!! I am not a clinician!!!! Please disregard everything I have written. :)

To me it looks like they might be trying to use the vertebral centroid method. The bottom curve looks good but the upper curve looks like they miss the centroid on the lower half. That is, the bottom line isn't going through the centroid of the lower two vertebrae. So it looks like the measurement is too narrow. Hopefully that makes a bit of sense.

I can see the rotation better when I adjusted the contrast levels a bit. I can't measure the rotation because that requires a special type of ruler.

I don't see any obvious deformations in the high thoracic curve, ~ T3-4. But it still looks to me that T4 is a bit wedged. The high thoracic compensatory curves, I don't think, usually look that sharp. Idiopathic curves tend to have an obvious gradual curvature. But to me, the vertebrae look straight and then at T3, the spine changes direction. :confused:

Anyway, it might benefit you to go see a spine doc. I don't know that it would/should change your treatment, but it's always nice to have a diagnosis that you trust.

DISCLAIMER AGAIN!!!! I am NOT a clinician. I am just giving you my thoroughly unqualified opinion!! But it does look like they have made at least one measurement error.

Excellent! Sharon insists that I too can do this, but I have my doubts. Still, cannot help but have lots of admiration for those who can. What gets to me is the wide variation between "readers". Five or ten degrees can be important in terms of treatment recommendations - leaves me feeling a little discombobulated :confused:

[cbeem]

Oh, thanks so much for taking the time to answer a question just so specifically for ME. I really appreciate it. That was so nice of you. I have decided to get a second opinion. I have to wait for tomorrow with the holiday, and I'm not sure if I need to get a referral from my primary doc, but I'm going to make those calls after the holiday and see what I can do.

Yes, "wedged" and "changes direction" don't sound too great for one's spine, but I certainly don't have as drastic a curve as many have to deal with. I wonder though if whatever is going on there at T4 is causing me to have more discomfort than one with a 30-40 degree curve typically has. I'm still not jumping into surgery, but I would like to have a complete, accurate, and trustworthy assessment of my scoliosis right now. I'm ready now and I'm motivated, and I worry that if I get too much older, my options will be lessened. So, off I go! :)

Thank you, everyone! I'll surely keep you posted as I move forward. In the meantime, I've signed my boy up for the daycare program at the gym and tomorrow will be his first time there and my second attempt at pilates! Look out! ;)

Cristy

[mamamax]

I admire you Cristy :-) You were a great sport letting us all discuss your xray - don't know that I would have been (getting old and cranky). And I think your decision to get a second opinion is a wise one. Pilaties (in theory) to me, seems a good way to go. And you seem wise enough to remember that if it hurts - modification maybe in order. I'm excited for you and any benefit you may achieve. I hear you about that window of opportunity! At 60 (with all kinds of wedging and other things I really don't want to confront) I feel time is running shorter. I comfort myself with such sayings as - it's never too late :-) And in the benefit I currently am receiving from bracing. As time marches on, I'm sure I'll need more in terms of daily exercise (and regardless of outcome, being in good shape for whatever - certainly wouldn't be a bad thing). Looking forward to what I hope will be a very rewarding experience for you.

P.s. Let me know what you think of the 100. I actually did that once upon a time - felt like a booby lift!! I may go back to that actually (lol).

[skevimc]

What gets to me is the wide variation between "readers". Five or ten degrees can be important in terms of treatment recommendations - leaves me feeling a little discombobulated :confused:

I know what you mean. Part of the discrepancy can come in the form of the x-ray technician. Just like photography is an art form, getting a good and consistent standing x-ray is equally so. Feet placement, posture, shoulders, etc... all of these things can contribute.

As far as treatment recommendations are concerned, this is why clinicians and researchers need to start focusing on other outcome measures and other reasons for suggesting a particular management strategy.

[mamamax]

Well said Kevin. Another component that can also affect readings, is the time of day that an xray may be taken. Don't have the articles I've read about that at my fingertips at the moment, but apparently curves (both young and old) can vary widely throughout the day - depending on the stresses involved. I always try to schedule any xrays for before noon - when I am not as fatigued. Why? Because I *think* it gives me a consistent baseline throughout the years. As opposed to an early morning reading one year - and a late afternoon reading 2 years later, after a very tiring day .. which could make it appear that a large progression has occurred when in fact, maybe it really hasn't. I would personally find a large image difference more concerning & reliable if it were from the same time of day as the preceding image two years prior. Too deep - maybe, maybe not.

There are other methods of assessing overall condition. Why they are not used more often is a question I can't answer. I do wonder sometimes if it has to do with time and money. One of those methods is the Biometrix Formetric - a radiation & contrast free scan. I don't know a lot about it - think it is not meant as an initial diagnostic tool but rather as a tool that can assess any changes that may require further investigation (xray). I believe it may be used in Germany more than other countries at present. My most recent scan attached. Interesting that things like convexities/concavities are pretty easy to see. Are you familiar with this method Kevin?

[dailystrength]

I noticed that - so now I have a new question. Is rotation a factor that should be considered in an accurate measurement of one's condition ... for purposes of treatment recommendations?
*
I think rotation is a very important factor. My PT said I did not have a lot of rotation last year, but recently anther professional said I have a lot. What to believe? Did it worsen? If so how, and how do I prevent that. I try to figure out how to de-rotate; I found a helpful suggestion this weekend and I will try to locate it on the web - was not feeling well and did lots of web-browsing on our ever-popular topic :)

[mamamax]

Ha-ha! Yes, it is our ever favorite topic isn't it? I very much look forward to your posting on the de-rotation. Lots of theories on that.

[skevimc]

Another component that can also affect readings, is the time of day that an xray may be taken.

Too deep - maybe, maybe not.


Absolutely. This is pretty well documented that curves are larger in the afternoon. Discs 'dehydrate' throughout the day. Even straight spines are taller in the morning.


[COLOR="Navy"]

There are other methods of assessing overall condition. Why they are not used more often is a question I can't answer. I do wonder sometimes if it has to do with time and money. One of those methods is the Biometrix Formetric - a radiation & contrast free scan. I don't know a lot about it - think it is not meant as an initial diagnostic tool but rather as a tool that can assess any changes that may require further investigation (xray). I believe it may be used in Germany more than other countries at present. My most recent scan attached. Interesting that things like convexities/concavities are pretty easy to see. Are you familiar with this method Kevin?

Time, money, training, space, etc... Plus they are just as susceptible to the same variation as x-rays. Lots of reasons they don't look at other options.

I know they use Biometrix in Germany. H. Weiss uses them in the Schroth Clinic. It's an interesting procedure but requires a dedicated room that can be completely blacked out. It also requires that the patients completely remove the top half of clothing and pull the bottoms down quite a bit to fully expose the top half of the hips/pelvis. Of course this is frequently done in the exam room anyway.

My mentor (Asher) worked with Suzuki to help validate the POTSI and Suzuki rib hump sum. I believe the findings were a weak to moderate correlation with x-ray findings. So they kind of lost interest as a direction for research or changing clinical practice. Also, for the time involved in setting everything up, a good doctor can generate the same findings using their own surface measurements, scoliometer, waist crease, should height, etc...

[dailystrength]

Ha-ha! Yes, it is our ever favorite topic isn't it? I very much look forward to your posting on the de-rotation. Lots of theories on that.
Thank you for your interest but I am so sorry- I thought I had saved it but can't locate it- I will be sure to post it if I find it.

[mamamax]

Thank you for your interest but I am so sorry- I thought I had saved it but can't locate it- I will be sure to post it if I find it.

That's too bad. I really was looking forward to what you had found. I've got some info too - in book form, if I have time this weekend I'll scan and post.

[dailystrength]

That's too bad. I really was looking forward to what you had found. I've got some info too - in book form, if I have time this weekend I'll scan and post.



Hey there,

Last week I bought on Amazon: Katrina Schroth's 3-D book as well as a new one which I recommend: Twists, Curves, and Bends. Excellent resource, it appears! I am looking forward to going through it, when the Olympics ends and I get my evenings back :)

[hikerchick]

Hey there,

Last week I bought on Amazon: Katrina Schroth's 3-D book as well as a new one which I recommend: Twists, Curves, and Bends. Excellent resource, it appears! I am looking forward to going through it, when the Olympics ends and I get my evenings back :)

I have that Scroth book, I need to find it and read it, thanks for the reminder. Let us know what you think of the Twists... book, I am very interested in getting it myself.
Thanks!

[mamamax]

Hey there,

Last week I bought on Amazon: Katrina Schroth's 3-D book as well as a new one which I recommend: Twists, Curves, and Bends. Excellent resource, it appears! I am looking forward to going through it, when the Olympics ends and I get my evenings back :)

I took a look at Twists/Curves/Bends at amazon - looks good. Put it on my book list - will wait for your review ;-) The Olympics are rather ruling the air ways here too. The ice skater who lost her mom recently but went on to complete a great performance - amazing that. Yes, I was in tears!

[dailystrength]

I took a look at Twists/Curves/Bends at amazon - looks good. Put it on my book list - will wait for your review ;-) The Olympics are rather ruling the air ways here too. The ice skater who lost her mom recently but went on to complete a great performance - amazing that. Yes, I was in tears!

I think that was the best Olympic moment... so dramatic; how great she got a medal. But we digress....
I will make time in my schedule for the book. On a side note, I bought a bike on Saturday and hope to get out more- was out for a ride a week ago and discovered some good roads. As long as I keep moving, I seem to manage pretty well.

[cbeem]

Hi gang!

Update: I've been going to the gym and am pretty much done with PT....feeling better a bit, but I think a lot of that has to do with my back spasms calming down after the last "flare up."

I saw the surgeon today. He re-measured for me--much closer to the degree Skevimc got. 44 on top...36 I think on bottom. I'll go back for another set of xrays in 2 years.

I guess it was reassuring to hear from a doctor that it's not strange to have such pain from a "moderate" case. The fact that surgery may or may not help pain adds to my original thoughts about not doing surgery.

I don't know why I just feel kind of bummed out tonight. I guess there is no miracle answer, and this is how it is, and it's really up to me to exercise and get strong...I'll aim to feel empowered by this tomorrow. :)

Best wishes to you all tonight. Thanks so much for your support!
Cristy

[dailystrength]

Yay, that's wonderful, Cristy. I am so glad that you are finding ways to relieve pain. It may take more time also and changing routines as you go. Please also see the book I just found: Curves, Twists, and Bends by Annette Wellings (find on Amazon)-- that is really helping me. If I come home at the end of the day at the office with pain, a few of her stretches really take it away. (Mamamax, take note; my review is very favorable!- I am learning one or two a day and they are so restful that I love to do them! Really ha ha)

I am also glad to hear your doctor said the same as mine - that surgery will not take away pain necessarily; mine added that it may just give you different pain.

About the ups and downs, in the book I mentioned, I found a "friend" in the author, who lives with a pretty severe curve also and who changed careers from linguist to Pilates teacher to find out how to help us all. She talks about the psychology of dealing with scoliosis and one of the ways, which was her and which I can relate to, is trying harder and harder ("I will fight this!") She says to just "listen" to your back. It is so reassuring. I can't recommend the book highly enough-only $12 or so. Yes, this is something we need to accept - work with it, find out and do what we can to help, rest when we need to, and take care of ourselves.

Thank you for your follow-up post.
Christina

[mamamax]

Please also see the book I just found: Curves, Twists, and Bends by Annette Wellings (find on Amazon)-- that is really helping me. If I come home at the end of the day at the office with pain, a few of her stretches really take it away. (Mamamax, take note; my review is very favorable!- I am learning one or two a day and they are so restful that I love to do them! Really ha ha)

I found a "friend" in the author, who lives with a pretty severe curve also and who changed careers from linguist to Pilates teacher to find out how to help us all. She talks about the psychology of dealing with scoliosis and one of the ways, which was her and which I can relate to, is trying harder and harder ("I will fight this!") She says to just "listen" to your back. It is so reassuring. I can't recommend the book highly enough-only $12 or so. Yes, this is something we need to accept - work with it, find out and do what we can to help, rest when we need to, and take care of ourselves.


ok Christina - you convinced me. Just ordered the last copy available at Amazon and look forward to the read! Thanks :-)

[dailystrength]

You are welcome! I hope you enjoy it - it's easy to follow and read. Hope you had a good week!

[dailystrength]

Hey all - I just wanted to mention the new chair I got for work - the Giaim Balance Ball Chair. By the end of the day I felt I could sit for three more hours- in other words, no pain. It works with my imbalances to create an individually-tailored sitting surface. I recommend it. Read all the Amazon reviews, but it works for me!

[mamamax]

Dailystrength - I consider my office chair nothing more than the ultimate torture device (and yes, I've tried every so called ergonomic adjustment I can think of). I've often wondered if your chair was worth the investment. How long have you been using it? Very glad for you :-)

[mamamax]

About the ups and downs, in the book I mentioned, I found a "friend" in the author, who lives with a pretty severe curve also and who changed careers from linguist to Pilates teacher to find out how to help us all. She talks about the psychology of dealing with scoliosis and one of the ways, which was her and which I can relate to, is trying harder and harder ("I will fight this!") She says to just "listen" to your back. It is so reassuring. I can't recommend the book highly enough-only $12 or so. Yes, this is something we need to accept - work with it, find out and do what we can to help, rest when we need to, and take care of ourselves.
Christina

Thank you once again for the referral to this book. It has just arrived. Taking a quick look through it convinces me it is going to be a very valuable addition to my library. Rainy first day of spring here - good day for this read. Many things addressed in this work that I've not seen anywhere else .. things important to me. Great find Christina!

[dailystrength]

Mamamax, I'm so glad you like the book! Thanks for letting me know. I have learned several lengthening exercises, and I try to do as the author does, 10 min in the morning and evening. The mornings are more difficult because I can be stiff.

About the balance ball chair, thank you. I've been using it for only a couple of weeks. It is a gamble to invest in as there is no way to know if it will work for you. An old roommate with back issues mentioned she used it, and after about a month I broke down and got it. Like you, I have an 8-way ergonomic chair that I spent a lot on, but after a year or so, I was beginning to feel like I was caving in to the one side. This ball chair enable me to pull up out of that concave side. My boss and a coworker both tried it when I was traveling for a couple of days (took a trip to see a friend in NYC - yay!), but neither liked it. My boss said basically that it took work (yes, but we appreciate proper work!) and the other said it was hot, but I plan to cover it with a hand towel on warmer afternoons. For me it enables me to sit UP and not feel like I am squishing to one side. It works with and "gives" with my imbalances. I noticed another reviewer on Amazon with scoliosis loved it - I did a review search. Oh, and there are 2 sites on Amazon- go for the one with the colored ball chairs (vs. black) - that's where I found the review.

Well, that's all for now. It's POURING down Spring rains here right now! Christina

[rohrer01]

I just wanted you to know that I am, was in a similar situation. I was diagnosed at 16 with a 39* upper thoracic curve. Lower thoracic was in the teens I think. I had SEVERE pain. I have been battling pain intermittently my whole life. My first backache was at 8 years old. I am 41 now and a grandma of an 18 month 26 pound bouncing baby boy. My curve have progressed to 46* upper thoracic and from the look of the x-ray a similar lower curve (he didn't give me a measurement). I have pretty much tried everything. As far as the non drug route, swimming helps the best for me. I will tell you though, that our bodies are uniquely shaped and "proper" swimming techniques for me are IMPOSSIBLE. I do the best I can. The breast stroke seems easiest along with the back stroke. This over the shoulder stuff and turning your head to the side to breath, forget it! I don't move that way. I am in VERY much pain now and on very powerful drugs to control it until I can see my doctor. I am hoping and PRAYING that he will do surgery, even though I will have to have two surgeries. My curve itself is in the "surgical grey area" meaning I'm not over 50*. But I can't stand the pain anymore. I want my life back to at least a tolerable pain level. I am walking over a mile a day to try to keep my back muscles strong. It seems to only serve to make me lose weight (not good), as I am about 121# and 5'7". I just encourage you to pray about your circumstances. Small and moderate curves can hurt like heck! Don't let anyone tell you otherwise. I was always told my pain wasn't from scoliosis, but they ran every test available on me and never could come up with another conclusion. My current doctors (neurosurgeon and scoliosis specialist and GP) are the ONLY ones who have ever validated where my pain is coming from. Believe me, there are those of us out there that are/were "moderate" that have been through the minimization game. You do what you feel is best. Find a doctor that believes you and that you believe in. I have found that exercise doesn't reduce the curves, but it does reduce the pain if you can stay active.
I find the hardest part of accepting my disease is when it limits me from doing what I want. I would love to learn to ski, but it will never happen for me (although there are those on here that DO ski, even with fusion - TitaniumEd for one). It makes me frusterated and all I want to be is NORMAL. But when you look at anyone in the population, as someone else said on here we all have our problems. Ours just happens to be scoliosis. Yes, it can be painful. Be determined not to let it define who you are. Deal with it the best you can, but you are NOT scoliosis. And WE will all beat this one way or another. I hope you take some comfort in these words.
((((HUGS))))

[jrnyc]

Hey Cristy
i am so sorry that you are suffering...pain is pain, & i dont think anyone, including doctors, have the right to tell you if something "should " hurt...becasue you have just told them it DOES hurt!! i went thru that with lyme disease..til i ended up in a wheelchair...and there were STILL clowns, including clown doctors, telling me "but it really shouldnt"!!

i dont know why you go to a physiatrist..cause as far as i know, they are not pain management doctors..now, i know you expect to have surgery...but until that day..why would it hurt to go see a pain doctor..they are the ones who can tell you if botox, epidurals, facet blocks, nerve ablations, or sacroiliac injections can lessen your pain..because despite the "structural" that we all have with scoli...nerves & muscles & joints are involved...
my curves are 40 thoracic & 61 lumbar as of 10/09...will be remeasured april 12th at surgeon's office....but i can tell you that when the botox freezes my thoracic muscles, my pain dissipates tremendously!! and sometimes the facet blocks and the sacroiliac shots really help the lumbar pain! acupuncture never helped me...nor did epidurals...but some other shots do help...so i take advantage of them!

good luck
jess

[dailystrength]

Dailystrength - I consider my office chair nothing more than the ultimate torture device (and yes, I've tried every so called ergonomic adjustment I can think of). I've often wondered if your chair was worth the investment. How long have you been using it? Very glad for you :-)

Hi Mamamax, I'm still going strong on the ball chair. Love it. I would bet you could return it (paying return costs) if you tried & didn't like it. Amazon = free ship to you. I got green; look for the page with the pretty color ones. I only could not use it Monday, being sore from a long bike ride on a poorly adjusted bike. But I was back on it Tues for the rest of the week. I hope you can find some relief soon in your chair situation.

[cbeem]

You guys are great. I'm going to have to check out that book too. I haven't been on here lately--work has been just INSANE. But, at least this semester I'm not constantly steadying myself from the pain. I'm still getting used to the gym. It's so hard to find the time, but if I don't go my insurance won't cover the gym cost, so that motivates me too!

Thanks again, friends. Here's hoping that the rains lighten up (it's raining here today as it seems it was when most of you were posting in the past month or so), and we all get to feel better in the warmth of the summer.

Cristy

[cbeem]

Meanwhile...I JUST looked at the balance ball chair. I actually went and got a yoga ball for home a few weeks ago. Damn, that thing is huge and a terrific temptation for my almost-four-year-old, but I pulled it over and sat on it one night at the dining room table while I was reading for work. I guess it takes a little more balance because there's no stabilizing apparatus, but it did really feel like it took the weight off. And, of course, there's no back support with a BALL. BUT, if you're thinking about investing in the chair--try the ball alone and see if you like it! (I think the ball was $9 at Target.)

I got the ball because I've been doing this great stretch over it on the side (like the ball under my ribs on the side and my arm stretched over like a ballerina--gosh, I stink at describing stuff like this), and it feels so good!

[dailystrength]

That's great, Cbeem! Just for an update, I get jokes about my chair from the guy who picks up the garbage - he said he thought it was a potty when he was helping me put it together - but a recent volunteer asked me about it and I told her it's revolutionized my work day. I keep a picture of my x-ray near my desk just to help me see how I might try to be better positioned, and I showed it to her and pointed out my uneven "sit" bones, and said that the ball allows me to sit evenly. I love it. I don't even notice it now except the lack of pain. And yes, it comes with a flyer with stretching instructions. I tried a bigger ball but it was too hard to reach my desk - the chair is about the same shape and height as a regular chair. Anyway, good for you!

[cbeem]

Thanks for the info. I may need to try one down the line a bit. Good for you keeping the pic there. It's just so tempting to fall into the curves rather than try to work against them. That's a really good idea.

[jrnyc]

i am soooo amazed that you guys can sit on a ball...even the really big ones...i just cant...i never even was able to use a bike in the gym that wasnt recumbunt (splg?)...my rheumatologist warned me what the bikes without backs would feel like...boy, was he right!! i dont know if it because my discs are so destroyed now...Dr Lonner told me (april 12th visit) they are getting so much worse...in the last year, they got worse while my curves pretty much stayed the same...42 thoracic and 61 lumbar....he wants to "clean out the discs and put spacers in" with the side incisions, then go in the back and put the rods and screws in...all "minimal invasive"....

i admire those who can use those huge exercise balls...to me, they are just so unstable and without support that my back feels worse...

enjoy the gym...i kinda miss it....especially the feeling of accomplishment one gets after the work out is over!! :)


jess

[dailystrength]

Thanks, Cbeem.

Jrnyc, I am sorry to hear about your disc problems. Was that evident on the x-ray? I get my annual x-ray on Thursday. I guess pain is an indicator. At any rate, it sounds like you are under good care with Dr. Lonner.

[jrnyc]

i know the discs showed up on the MRI...not sure about the Xray...but back when first i herniated them, my rheumatologist showed me the Xray he did, and the discs looked all fuzzy...he said that showed damage..:(

jess

[dailystrength]

Ohhhh. Is the damage from the scoliosis do you or does he think? I have "degeneration" aka arthritis. But no disc issues that I know of.... yet....

[LindaRacine]

Ohhhh. Is the damage from the scoliosis do you or does he think? I have "degeneration" aka arthritis. But no disc issues that I know of.... yet....

Just about every adult with scoliosis has some amount of disc degeneration. Here's an example of extreme degeneration (on the right):

Here's an xray image of a pretty healthy spine when viewed from the side (laterally):

http://jcem.endojournals.org/content/vol89/issue2/images/large/zeg0020401800003.jpeg

And, here's an xray of a spine with a moderate amount of disc degeneration:

http://www.rad.washington.edu/staticpix/mskbook/DDDLatLS001.jpg

In severe degeneration, you can hardly see any disc material at all. And, unfortunately, it's not uncommon to see that in people with scoliosis.

--Linda

[jrnyc]

Hi dailystrength
my scoli didnt ever both me very much UNTIL i herniated the discs...then all heck broke loose! it was really downhill from there...

Dr Lonner just told me, on April 12th, that my discs have gotten alot worse, while my curves havent changed too much in the past year...that is the reason for the increased pain, according to the doctors...that is why they want to go in and "clean out the discs and put spacers in"....

of course, i'm sure my spinal arthritis and spinal stenosis are not helping the pain....dont know how much worse those have become...dont know that the pain causes can be completely separated out...but i do know that all together, my back is A MESS! :rolleyes:

am wondering if you need to have an MRI in addition to the Xray...?

jess

[dailystrength]

Thanks, Linda and Jess. I see my neurosurgeon tomorrow morning!!! I did see a spot on my previous x-ray that looked fuzzy like the second photo, so maybe that is the degeneration. I will certainly ask about it tomorrow. I have so many questions for him - like why I am stiff after lying in bed if I have a sick day-- I can't even bend over to tie shoes for the next two days. Anyway, tomorrow will be telling! I will certainly ask about an MRI. Thanks, again.

[jrnyc]

hi daily
hmmmm...do you have an orthopedic guy who specializes in scoli...? i wouldnt trust a neurosurgeon person without having an ortho guy...? that's just my opinion...but did your neuro guy ever refer you to a scoli surgeon? even just for consult?

hope you feel better and get some good answers at the doctor's tomorrow...

jess

[dailystrength]

Yes, Jess, he's an SRS neurosurgeon, head of the spine dep't, did his special study in scoliosis. I see now that he is also an orthopedic surgeon. I do feel I'm in good hands. This is him: http://www.healthsystem.virginia.edu/internet/neurosurgery/faculty/cshaffrey.cfm
My Mom AND Dad are both coming, for support and education!

Thanks so much for your support. I am planning on maybe doing a thread on it. Christina

[foofer]

Christina,

I have a consult tomorrow also for x-rays and updates. Can't wait to hear your news and I will report in mine....

[jrnyc]

oh, Christina...i am SO GLAD that the doctor has both specialties! perfect!
hope the appointment goes well!

best of luck...rooting for you!

jess

[Back-out]

In severe degeneration, you can hardly see any disc material at all. And, unfortunately, it's not uncommon to see that in people with scoliosis.

--Linda

That's how mine look. And all fuzzy as if they had cotton candy draped in and around them, while the edges of the vertebrae look like white soft lips, with a kind of pebbly surface.

Worst, if course, is the collapsing blocks effect, curved but something more. As if a child had built a tower and just knocked it down from the side/middle. They appear to be falling.

Was just examining my recent lumbar close ups from the HSS and I don't think I can take any more. Wish I could post them, but I don't know how to upload pix. :o What I really need is a barfy smilie - the kind that ralfs in motion. :(