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spitfire
03-02-2016, 04:18 PM
Hello all,

I will be happy to provide more information if needed, but I'll try to keep my intro brief.

I am a 44, soon to be 45, female. My left lumbar scoliosis was discovered very early. I started PT and monitoring at 12 degrees. I was braced (Boston) at 18 degrees and finished bracing at 18 degrees. Success!

During the 80s I never heard the words "rotation" or "imbalance". I have no measurements but I do have rotation and my head has never been over my feet.

I started having disc problems with both back pain and leg numbness in 2010. I see a regular orthopedist, not a scoliosis specialist. My doctor does feel the curve contributed to the overall degeneration. (He described my spine as a 70-year-old lady's spine.) At that time (January 2010), my curve was still only 22 degrees. I have used nerve blocks, PT, and OTC meds handle the pain.

This fall the pain returned with an intensity and I felt ... unstable. I am sure I felt my lower spine wobble several times.

X-rays in January 2016 showed a 42 degree curve with a new (very small) compensating curve. Unfortunately I have no X-rays between 2010 and 2016.

My orthopedic doctor prescribed Schroth PT. I declined a 3rd nerve block. I return in a few weeks for a follow-up.

So ... should I be worried? Because I am worried. Maybe I'm too worried. I never expected my curve to change that much. Is it possible for a curve to progress and then stabilize in adults?

Thank you!

Pooka1
03-02-2016, 07:28 PM
Hi and welcome.

I really hope some of the adult patients chime in.

Did they tell you what kind of scoliosis you have? It seems to me you likely do not have idiopathic scoliosis (IS) but rather an early case of degenerative scoliosis and degenerative disc disease (DDD). I know a woman who was in that category... very early onset DDD though I don't think she has much of a curve, just the disc damage as a young adult.

One reason I think you do not have IS is because that would be breath-taking and completely against the paradigm if you went from 18* at skeletal maturity to 42* now. Eighteen degrees is considered protective against future progression to surgical range which you are not in Cobb angle-wise but may be in DDD-wise. Eighteen degree is even below the bracing range so I am a little surprised you were braced then. And because you were braced, if you do have IS and you are eventually fused, that would have to count as a bracing failure despite all appearances to the contrary to this point. It is very sobering to realize that the BrAIST study declared victory with a 49* or lower curve with no more than 25% growth remaining. If you were in that study you would have been counted as a "success." And yet there you are in great pain with a 42* curve. Essentially these bracing studies that don't have decades of follow up may not be as valuable as they seem.

I think you need to consult an adult deformity specialist with much experience in spine.

Good luck.

titaniumed
03-02-2016, 11:11 PM
I would see a “scoliosis surgeon”..... “regular” non scoliosis trained orthopedics are not your best choice in your condition. And I would NEVER, EVER let a regular orthopedic operate on my spine. No way, Jose...

The SRS has a physician locator...

http://www.srs.org/

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

Just because you see a scoliosis surgeon doesn’t mean you are having surgery. No surgeon with any integrity should push any scoli into surgery. You just go in and talk. That’s how it starts.....

They also prescribe the “correct” medications for our problems....I have seen this and have been amazed....NSAID’s are usually prescribed, and do work well.

Medical science has come a long way since the 1980’s.....

Welcome to the forum Spitfire!

Ed

spitfire
03-03-2016, 10:29 AM
Thanks Sharon and Ed! I feel a little like a party-crasher coming to a forum like this and saying I was braced at 18 degrees.

I knew the bracing story would raise questions and I really don't have answers. I was 12 or 13. I know my parents didn't push for it. We knew nothing.

Here is what I remember. When I was 11, my mom noticed that my jean pockets were uneven. The curve was only 12 degrees. After hand X-rays to determine my bone age and a full body scan with radioactive dye to look for tumors, I reported back every 3 months for follow-up X-rays. (I don't think I've reached 100 X-rays yet, but I must be close.) During one 3-month period, my curve changed from 12 degrees to 18 degrees. I remember the doctor telling my mom that there was no point in waiting. We measured for a brace that day. (We lived far from the scoliosis practice.) For all I know, I may have been included in a study. I know the clinic had a teaching program because every visit I had the privilege of stripping down to my panties and standing in front of a group of very young men with clipboards. When I stopped growing and the doctor released me from the brace, I SWORE I'd never be back.

Edited to add: A few years after I completed bracing, my first cousin had scoliosis surgery for a 60 degree curve discovered at age 16. That made the brace feel like a small sacrifice. I truly felt like I had dodged a bullet.

I have always thought that I look much worse on the outside than the inside. 18 or even 22 degrees should be nothing! I don't know that my rotation is severe, but it may be disproportionate to my small curve. Again, I have no official measurements, but comparing pictures to my 2010 X-rays, it looks like grade 2. (I'm not a professional!) My lower back resembles a steel cable beside a ditch. One hip is almost even with my ribs while the other juts out several inches. I've had several people point out that I lean heavily when I walk. (Thanks, Captain Obvious.) The only positive thing about the recent changes is that I don't lean as much now. I guess a compensating curve helps that. I should have known something was amiss when I took a speech class last summer and was not dinged for leaning or askew clothing.

I don't know that my curve would have progressed on its own. I do think the DDD spurred the progression. But I also think the curve spurred the DDD. I definitely agree that we need studies over longer periods of time.

Ed - I'm trying to be patient which is not my forte! My husband is a biomedical engineer specializing in, of all things, the lumbar spine. He is very opposed to surgery but thinks highly of the Washington University team in St. Louis (5hrs away) and has worked closely with an adult deformity surgeon in Chattanooga (8 hrs away). My orthopedic doctor told us that if I'm not better by the end of March, he will request an MRI. Once I have the new X-rays + a new MRI, it will be easier to request consultations with distant doctors.

Pooka1
03-03-2016, 12:32 PM
Hi Spitfire. You are a very interesting case if I might say so. :-)

Can you post your 2010 radiographs? Are they digital?

If you have rotation then that is idiopathic scoliosis, not adult scoliosis associated with DDD as I understand it. Maybe Linda will comment.

If you were 18* at skeletal maturity with IS and then progressed to the 40s, that is definitely off the reservation. I think it is generally accepted that if you can be 30* or less at skeletal maturity, you are not likely to ever need fusion for progression. But if a large percentage of these people with small curves end up getting fusion for DDD and pain then focusing on progression only is ridiculous.

I know with my daughters that we were under the impression that if they could be below 50* at skeletal maturity then they would escape fusion for life. My naïveté at that time was off the scale I have come to learn.

spitfire
03-03-2016, 03:29 PM
17991799

I hope this works.

I apologize for the pics of my itty-bitty baby curve. Please, don't hate me.

These were taken in January 2010 during my first visit to an orthopedist since high school. I was experiencing lower back pain (left), numb toes/foot (left), and excruciating hip pain (left). I finally saw a doctor after I fell in front of my husband and he made me go. This x-ray wasn't intended to look for or measure scoliosis. My doctor was focused on the source of my pain. (MRI showed a disc bulge at L4/L5). I was very relieved that my curve looked pretty much the way I remembered it. Later I printed the x-ray and used a ruler and protractor to measure the angle. I thought it was around 22 which would be about right for 18 degrees in high school. Someone with experience may get a different measurement.

I can see that there is obviously some rotation there, but no medical professional has ever quantified it. With a curve so small, I don't think it really mattered to anyone.

Pooka1
03-03-2016, 03:42 PM
Thanks Spitfire for posting those.

Can you also post the radiographs from Jan 2016 showing the 42 degree curve?

spitfire
03-03-2016, 04:03 PM
I will as soon as I have a copy. Since my doctor mentioned another MRI, I planned to wait until those results and request all my records at once. The new ones include a full chin-to-hip X-ray. (The Schroth therapist was unhappy with the short lumbar X-rays and marched me back to the machine for a "real" X-ray.)

Please don't let my case upset you when thinking about your daughters. I may just be an anomaly. I still think I may have injured something this fall. I really expected the doctor to find a pars fracture and/or spondylolisthesis. The doctor didn't find anything but had a hard time getting a clear side-view X-ray. The techs had to try several times and finally positioned the camera at an angle to see L4 and L5. The curve quickly became the focus of the visit.

Pooka1
03-03-2016, 06:48 PM
Spitfire, my twin daughters were fused, one in 2008 and one in 2009. They were both surgical cases.

titaniumed
03-03-2016, 10:14 PM
I am surprised that since 2010, you have not taken any “prescribed” NSAID’s ? Didn’t any of your doctors bring this up? Celebrex, Diclofenac, Etc.....GP’s used to hand out Celebrex like candy years ago, especially for herniated discs.

https://en.wikipedia.org/wiki/Nonsteroidal_anti-inflammatory_drug

These are great at putting the fire out.

Just in case this comes up, as far as surgery is concerned, I still wouldn’t submit to a single level fusion on that L4-L5 level unless you see a scoliosis surgeon. I would also like to have at least 2 scoliosis surgeons in agreement on something like this since there are cases like this that have acted as a catalyst’s for progression. After reading thousands of scoliosis testimonials over the years, I have seen these testimonials and remember them. Scoliosis surgeons are the only ones trained at sagittal balance, and this is extremely important in scoliosis patients. Regular Orthopedics have no training on this, but will fuse a level or two...(It pays well, and so do the shots) Be careful. Remember that you do the hiring and firing.

I always like to believe that we “actually do heal”. These words have me almost at a crossroads, since I have passed and failed miserably. And I still believe this to this day, and it is worth trying or implementing with the right course of action. Beating herniated discs is possible. They do retract. Its not easy, but its possible. I have always curtailed my physical activity, and have rested when in trouble. Along with plenty of hot soaks, floating in deep tubs. Massage is also a good thing....I have found that massage immediately after a 30min hot soak makes the massage more effective. I don’t know why, but it does. It became one of my very expensive habits. (Years ago)

I also like to believe that surgery in Adults is a last ditch effort......Pain forces decision. Sometimes this isn’t possible, and we have no choice.

I guess that makes me a believer....(smiley face)

Believing and having a positive attitude keeps the worrying to a minimum.....

Ed

LindaRacine
03-03-2016, 10:31 PM
If you have rotation then that is idiopathic scoliosis, not adult scoliosis associated with DDD as I understand it. Maybe Linda will comment.


First, adult idiopathic scoliosis usually refers to people who have AIS, but are no longer adolescents/teens. They have rotation at about the same rate as adolescents. Degenerative scoliosis definitely is rotational. Here's an image of a typical degenerative scoliosis. You can see that there's definitely rotation.

http://www.eorthopod.com/sites/default/files/images/X-Ray_Lumbar_Scoliosis02.jpg

--Linda

Pooka1
03-03-2016, 10:34 PM
Just in case this comes up, as far as surgery is concerned, I still wouldn’t submit to a single level fusion on that L4-L5 level unless you see a scoliosis surgeon. I would also like to have at least 2 scoliosis surgeons in agreement on something like this since there are cases like this that have acted as a catalyst’s for progression. After reading thousands of scoliosis testimonials over the years, I have seen these testimonials and remember them. Scoliosis surgeons are the only ones trained at sagittal balance, and this is extremely important in scoliosis patients. Regular Orthopedics have no training on this, but will fuse a level or two...(It pays well, and so do the shots) Be careful. Remember that you do the hiring and firing.


I agree with this! There are some folks here who say that a 1-2 level fusion started a cascade wherein they ended up with much of their spine fused. I have always wanted to ask Linda if that was possible but guess if it compromises the balance as Ed mentioned, then maybe it is possible.

Maybe Linda can confirm but I think I read that is these 1-2 level fusions for pain are the most OVER-used surgery and a majority of patients end up with more pain than before the surgery. Also, I think PT has been shown to be better but I certainly don't know that about specific cases of even the class of cases... only a surgeon experienced in this would know. I would need several concurring opinions all from experienced guys before I agreed to this. And I would want to see the data myself. :-)

Pooka1
03-03-2016, 10:37 PM
First, adult idiopathic scoliosis usually refers to people who have AIS, but are no longer adolescents/teens. They have rotation at about the same rate as adolescents. Degenerative scoliosis definitely is rotational. Here's an image of a typical degenerative scoliosis. You can see that there's definitely rotation.

http://www.eorthopod.com/sites/default/files/images/X-Ray_Lumbar_Scoliosis02.jpg

--Linda

Okay thanks. That lumbar does not appear to be rotated at all to me. Look at how the peaks at the back all line up. What am I missing?

Pooka1
03-03-2016, 10:45 PM
This article discusses the two types of adult scoliosis. It seems like Spitfire fits better into adult degenerative but because she had the curve from when she was young, it is by definition adult idiopathic. Very confusing!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068860/


Rotatory deformity is observed in the entire lumbar spine in adult idiopathic scoliosis, whereas it is limited at the apex of the curve in adult degenerative scoliosis, accompanied with lateral subluxation. Finally sagittal imbalance is more common in degenerative scoliosis

spitfire
03-03-2016, 11:04 PM
This article discusses the two types of adult scoliosis. It seems like Spitfire fits better into adult degenerative but because she had the curve from when she was young, it is by definition adult idiopathic. Very confusing!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068860/

Very confusing - I agree! I'Ve tried to do some research but neither category seems to fit. I've seen some articles that use the label "adult idiopathic scoliosis with degenerative changes". That's a good description if not an official label.

Now I wish I had the new X-ray since we have this great discussion going. My next appt is March 24th.

spitfire
03-03-2016, 11:34 PM
Ed - I've taken steroid packs while waiting for a nerve block but never prescription NSAIDs. My doctor apparently ~thought~ he gave me prescription NSAIDs because he argued with me that my hair loss was from the drug and not the nerve block. (Three months after each nerve block, I lose a LOT of hair.) I declined another nerve block this time because the hair loss just adds insult to injury. I agreed that if the therapy doesn't stop the numbness in my leg, I'll reconsider the nerve block. So, this time he did give me a prescription NSAID, Meloxicam, which he said 5 minutes earlier could cause hair loss.... And he gave me muscle relaxers for sleeping because I'm not. They do help me get comfortable and sleep, but I've a couple of rough days afterwards.

rohrer01
03-05-2016, 02:32 PM
Welcome, Spitfire!

I am an adult in your age bracket with progressing scoliosis and severe sciatic pain from my lower back to my toes, worse on the left. I looked at your x-rays and you do have rotation and your spine does NOT look like a 70 year old spine. I don't see any disc spurs from osteoarthritis or one vertebra sitting on top of the other. You seem to have decent disc height. What I did notice was your SI joints are not the same. The space between the ilium and sacrum is much larger on the left than it appears on the right. This may be a cause for your feeling of instability. I get frequent (about every three to four months) SI joint injections and they help about 75% with the pain when the doctor gets the right spot. However, I have DDD in L5/S1 that still kills me! I can't stand for very long. They say it's stable, but it is very painful. They still have offered nothing to do for it. I have a multitude of other things wrong with my upper back and have some unknown muscle disease which is slowly taking my strength and ability to walk. However, I don't think this is necessarily related to what's going on in my lower back. I've developed a very small 6o curve in my lumbar, so don't be embarrassed by your 22o curve. There are a ton of nerves that are spread out and run through that area. It doesn't take much to pinch one or two.

Again, welcome.
Rohrer01

rohrer01
03-05-2016, 02:35 PM
Sharon,
Look at the spinous processes again. They should look like little vertical disc shaped shadows that are centered. You should not see the sides of them or see them off center.

spitfire
03-05-2016, 11:54 PM
Thanks Rohrer. I was hoping to hear from someone my age in a similar situation. I know no one has a crystal ball. I guess I'm impatient while waiting for my next appointment.

I wasn't experiencing any instability when this X-ray was taken. This is the closest thing that I have to a "before" picture. This was made in January 2010 when I first saw a doctor for disc issues.

I had a few episodes of a weird (and extremely painful) wobbling feeling in my lower spine in November 2015. I thought the instability might be related to extending my back while snorkeling with a noodle. (I needed the noodle because I'm a wimp who is afraid of the ocean. I kept popping my head out of the water to count children because I'm a mom who is afraid of the ocean.) X-rays in January 2016 showed a 42 degree curve. I wasn't expecting the curve to change that much.

Pooka1
03-06-2016, 09:36 AM
I wasn't expecting the curve to change that much.

If you indeed have AIS and you progressed from 18* at skeletal maturity to 42* now, that completely is off the reservation for what is presently considered the paradigm of treatment. That is, if you can keep the curve to south of about 30*, you are not expected to need surgery for progression at least. Nobody ever talks about these patients ever needing surgery for pain though.

Maybe you are just a rare case and maybe you are not. The way you get kids to wear the brace is to suggest it will let them avoid surgery for life. If the truth is something other than that for many people either due to pain or progression even with brace treatment then it is false advertising.

Pooka1
03-06-2016, 10:43 AM
Sharon,
Look at the spinous processes again. They should look like little vertical disc shaped shadows that are centered. You should not see the sides of them or see them off center.

I can't upload the file but this is what I did.

I have drawn a red line on the ridge at the midline of each vertebra. There is equal mass on either side of those lines for each vertebra. The lines remain centered on the vertebra. If there was rotation, those lines would be off center and there would be unequal mass on either side of each line. Yes?

leahdragonfly
03-06-2016, 01:39 PM
Welcome. <snip> I looked at your x-rays and you do have rotation and your spine does NOT look like a 70 year old spine. I don't see any disc spurs from osteoarthritis or one vertebra sitting on top of the other. You seem to have decent disc height. What I did notice was your SI joints are not the same. The space between the ilium and sacrum is much larger on the left than it appears on the right. This may be a cause for your feeling of instability. <snip>

Just a friendly reminder that while many here have seen lots of spine x-rays and mean well, we are all lay people, and no one here is terribly qualified to accurately discuss x-ray findings, especially degenerative changes. Qualified spine orthopedic surgeons are the best source for that sort of advice.

Good luck with your upcoming appointment.

titaniumed
03-07-2016, 04:02 AM
Ed - I've taken steroid packs while waiting for a nerve block but never prescription NSAIDs. My doctor apparently ~thought~ he gave me prescription NSAIDs because he argued with me that my hair loss was from the drug and not the nerve block. (Three months after each nerve block, I lose a LOT of hair.) I declined another nerve block this time because the hair loss just adds insult to injury. I agreed that if the therapy doesn't stop the numbness in my leg, I'll reconsider the nerve block. So, this time he did give me a prescription NSAID, Meloxicam, which he said 5 minutes earlier could cause hair loss.... And he gave me muscle relaxers for sleeping because I'm not. They do help me get comfortable and sleep, but I've a couple of rough days afterwards.

There is not much chatter about Meloxicam here on this forum that I have seen, and have NO idea about hair loss. I never did any corticosteroid shots for herniated discs only due to my prior regular ortho’s confused staff. Surgeons have to have good staff or it really causes a lot of pain....Communication is best done by e-mail from the doctors PA or nurse.

I did take a medrol pack for my cervical herniations, and along with Diclofenac that worked after 30 days of intense pain. Nerve pain or disc herniation on the cord really is a pain that is an “alarming” burning sort of pain, unlike any other pre herniation pain living with scoliosis. It becomes critical because you cannot sleep well when you are in pain and you become sleep deprived. Lumbar herniation’s affect the hips and legs, neck herniation’s affect the arms and hands.

Years ago when I was suffering with my 4 lumbar herniation’s, I really had to lay low. My activity almost came to a standstill and sitting was extremely difficult. NSAID’s, hot tubs, and massages were the norm back in those days. Ocean therapy worked, I even had a situation where I was a passenger in a car, supporting and lifting my spine by holding or pushing down on the seat. We hit a bump in the road and I self adjusted myself which helped.

Please be aware that NSAID’s can also cause cardio problems, never abuse or overtake these meds.....

The easiest way and fastest way to pain relief will be by floating in a hot tub. Even after my surgeries, I used a deep tub, and at 106 deg F it works in seconds. I felt that the Percoset and Oxycodone was more of a mask and those orals don’t work well on nerve and bone pain......If you tub, drink a lot of water. I took many hot soaks at the famous Steamboat Hot Springs. If it was good enough for Mark Twain, it was good enough for me.

I tried Robaxin many years ago and felt that it was weak. I never took muscle relaxers after that point...1978 era...

A latex foam topper on the bed will help with sleep....many surgical patients use them after surgery....

If you shoot MRI’s or X-rays, get copies burned to disc for your records. They are your property, don’t let the radiologist assistant give you any guff about this. CT’s produce a lot of radiation, if possible, do this as a last ditch diagnostics effort.

Also, be astute on exactly HOW MUCH the co-pay is on your diagnostics. My co-pay on my last MRI caused more damage than the herniation’s themselves.....(smiley face) You can also shop diagnostics for cash deals since dealing with insurance companies can be a pain in the (insert location here)

I cant comment on rotation in your x-rays.... I had HUGE rotation in my thoracic spine, it comes with scoliosis, and have CTs that show this. This is feet to sky looking up. You can see the screws after correction. The screws are approx 30 degrees after correction. These CT’s were done when they were looking for stones when I was having gall attacks in 2009.

Ed

rohrer01
03-07-2016, 04:57 PM
I can't upload the file but this is what I did.

I have drawn a red line on the ridge at the midline of each vertebra. There is equal mass on either side of those lines for each vertebra. The lines remain centered on the vertebra. If there was rotation, those lines would be off center and there would be unequal mass on either side of each line. Yes?

Sharon,
If you look at each individual vertebra you can see that T12 - L4 are all off center from the vertebral body. That's rotation. I don't know what her new x-rays look like...

Linda will correct me if I'm wrong about how to determine rotation. But it only makes sense that if the spinous processes aren't dead center on the vertebral bodies then they are rotated.

Pooka1
03-07-2016, 05:06 PM
The central ridge appears dead center on all vertebra. What am I missing?

That is not the OP's radiograph but rather one that Linda found.

rohrer01
03-07-2016, 05:10 PM
Just a friendly reminder that while many here have seen lots of spine x-rays and mean well, we are all lay people, and no one here is terribly qualified to accurately discuss x-ray findings, especially degenerative changes. Qualified spine orthopedic surgeons are the best source for that sort of advice.

Good luck with your upcoming appointment.

Maybe the doctor was talking about how her spine looks NOW, not when these x-rays were taken. I've made no claim to be an authority on the matter. I just know what I've been told about my spine and how my x-rays look as compared to how hers look at our age and I don't see a 70y/o degenerative spine. I've seen degenerative spine x-rays on both my ex and my current hubby who were neither nowhere near 70y/o and they were much, much worse.

There is a disclaimer on the forum entry that we are laymen, so that should cover our "opinions". If she wants to know my qualifications, she can ask.

Not trying to be snarky, just sayin'. We all discuss our x-rays and give our opinions. It's all over the forum. I totally agree with you that a scoliosis orthopedic surgeon is the best source of advice. But I've been told by several doctors that my neck is a MESS and they were orthos not specializing in scoliosis. The scoli orthos say it's not that bad. So, who do you believe? Of course, you take what you hear on the forum with a grain of salt. But it really can give one ammunition for questions to ask the doctor AND send them to the right doctor.

rohrer01
03-07-2016, 05:12 PM
The central ridge appears dead center on all vertebra. What am I missing?

That is not the OP's radiograph but rather one that Linda found.

Then what radiograph are you looking at? That's the only one there...???
I'm looking at post #6.

Pooka1
03-07-2016, 07:40 PM
Then what radiograph are you looking at? That's the only one there...???
I'm looking at post #6.


Post #11
.

.

rohrer01
03-07-2016, 08:27 PM
Post #11
.

.

So post #6 isn't her radiograph?
I'll look at post #11. I must have missed it. I was basing everything I said on post #6...

rohrer01
03-07-2016, 08:29 PM
I saw Linda's post on post #11. Those aren't Spitfire's radiographs. Are those the ones you are looking at for rotation?

Pooka1
03-07-2016, 08:39 PM
So post #6 isn't her radiograph?
I'll look at post #11. I must have missed it. I was basing everything I said on post #6...

Post #6 is Spitfire.

Linda posted a radiograph in post #11 to demonstrate rotation in degenerative scoliosis but I can't see any rotation. I did not look for rotation in Spitfire's radiograph though I assume it is there because she has AIS by definition.

Pooka1
03-07-2016, 08:40 PM
I saw Linda's post on post #11. Those aren't Spitfire's radiographs. Are those the ones you are looking at for rotation?

Yes. I wasn't commenting on Spitfire's radiographs

LindaRacine
03-07-2016, 11:33 PM
Post #6 is Spitfire.

Linda posted a radiograph in post #11 to demonstrate rotation in degenerative scoliosis but I can't see any rotation. I did not look for rotation in Spitfire's radiograph though I assume it is there because she has AIS by definition.

It's not terribly easy to see, but L2 is rotated. As in idiopathic scoliosis, degenerative scoliosis curves can be barely rotated all the way up to greatly rotated.

Susie*Bee
03-10-2016, 09:55 AM
Since Sharon said she hoped some other adults would chime in, here I am! Spitfire- love your name! So sorry about the difficulties you are having. I was never DXd as a teen with scoli (slipped through a crack) but do remember having other kids, when we were swimming, note that I had a "cool looking" spine because it was curvy. (how dumb!) I am sure I would have hidden it from my parents anyway, because when you're a teen, why would you want to do something??? Through my adult life I plodded on, not knowing anything should be done such as monitoring. I just know that my doctor, when I was pregnant at age 27, said "BTW, do you know you have scoliosis?" Fast forward another 27 years... and yes, many times my back bothered me during those years, plus the years before 27. When I was 54 I mentioned to my PCP that it was killing me by the end of every day and assumed it was arthritis. He took a look and ordered x-rays for a base line. From my 46º curve then (when I saw my SRS scoli doc), it progressed to 52º within 2 years, when I opted for surgery. I know the 5% error thing, but each year it was worse and the same doc was reading the x-rays, which were taken at the same time of day. 46-48-52. So I'm not sure about this concept of not progressing. I thought I had read (could be wrong) that it often progressed with the menopause years. Spitfire may be too young for that, but obviously something was happening to me in my 40s and early 50s. Now I think my AIS was triggered by the CMT I've recently been diagnosed with, so I'm not sure how that weaves into the perspective/category.

I will try to post some x-rays and even in the upper thoracic pic, you can see the difference in space between my ribs. That is just my compensatory curve there. I had one above and one below my major curve, so I looked straight. Ha ha! 29-52-29. Anyway, just wanted to say mine progressed in my adult years. Sorry, I'm not good at posting pics...

Best wishes as you try to find solutions. You've gotten a lot of good advice.

http://i244.photobucket.com/albums/gg25/SusieB1951/Rush%20digital%20x-rays/1.jpg (http://s244.photobucket.com/user/SusieB1951/media/Rush%20digital%20x-rays/1.jpg.html)

http://i244.photobucket.com/albums/gg25/SusieB1951/Rush%20digital%20x-rays/3.jpg (http://s244.photobucket.com/user/SusieB1951/media/Rush%20digital%20x-rays/3.jpg.html)

http://i244.photobucket.com/albums/gg25/SusieB1951/Rush%20digital%20x-rays/5.jpg (http://s244.photobucket.com/user/SusieB1951/media/Rush%20digital%20x-rays/5.jpg.html)

spitfire
03-31-2016, 11:43 PM
The lumbar X-ray is from 2010. The full X-ray is from 2016.

The curve has definitely changed, but when *I* measure, I only get 37 degrees. My doctor is a orthopedist who specializes in pain management. He has never measured my curve. My PT is the one who measured it as 42 degrees. The truth may be in the middle.

1836

1835

rohrer01
04-01-2016, 12:58 AM
The lumbar X-ray is from 2010. The full X-ray is from 2016.

The curve has definitely changed, but when *I* measure, I only get 37 degrees. My doctor is a orthopedist who specializes in pain management. He has never measured my curve. My PT is the one who measured it as 42 degrees. The truth may be in the middle.

1836

1835

I can definitely see the progression. It looks like you have some curve in your lower T-spine, too.Those of us under 50os are NOT safe from progression as the medical community likes to think. Have you been evaluated by a scoliosis doctor?
Take a look at mine on the thread (I have some imaging CD's). You can especially see the progression from 2005 to the 2015's.

Take care,
Rohrer01

spitfire
04-01-2016, 01:16 PM
My Schroth therapist pointed out the (small) upper curve. I haven't had a full X-ray since the mid-80's so I have no idea when that started. I do think I don't lean as much now as I did in my teens and 20's.

I had a double MRI yesterday - thoracic and lumbar spine. (Double the fun; double the price.) Last summer and fall my right floating ribs hurt so badly I wanted to claw them out myself. They don't hurt as often or as intensely now, probably because I don't move/exercise as much. I doubt the MRI will show anything. I've got to overcome my fear of pain and start moving again!

I feel a little better knowing (thinking) the curve is under 40 and hasn't progressed quite as rapidly as I previously thought. Hopefully, I will just need observation for now. There are two doctors in my town on the SRS list. One trained in St. Louis. I have the impression (perhaps incorrectly) that he mainly sees much older patients due to his hospital association, but he might be my best option. He is the only doctor with adult scoliosis information on his office website. I would feel better knowing someone was monitoring this.