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danicaf
05-28-2014, 02:55 PM
Hi,

I'm new to the forum and have a question regarding compensatory curves. When I went for a second surgical opinion, the surgeon insisted that my 45* thoracic curve was structural and my 50* lumbar curve is my compensatory curve. Now I know that my lumbar curve is structural, as this is the curve that was treated while I was a teenager. By the time I had finished growing my lumbar curve measured 36* and I did not have a thoracic curve; that came later. The surgeon also told me it is unusual to have a compensatory thoracic curve, usually it's the other way around.

Another surgeon told me he would only fix my lumbar curve and let the compensatory thoracic curve self correct.

Perhaps this is a question Linda could answer.

Thanks,

Diane

Pooka1
05-28-2014, 03:13 PM
Hi,

I'm new to the forum and have a question regarding compensatory curves. When I went for a second surgical opinion, the surgeon insisted that my 45* thoracic curve was structural and my 50* lumbar curve is my compensatory curve. Now I know that my lumbar curve is structural, as this is the curve that was treated while I was a teenager. By the time I had finished growing my lumbar curve measured 36* and I did not have a thoracic curve; that came later. The surgeon also told me it is unusual to have a compensatory thoracic curve, usually it's the other way around.

Another surgeon told me he would only fix my lumbar curve and let the compensatory thoracic curve self correct.

Perhaps this is a question Linda could answer.

Thanks,

Diane

Hi and welcome, Diane.

I am wondering if there was some miscommunication with the surgeon. The larger curve is never the compensatory curve to my knowledge. And the only way he could determine that is if you did bending films. Did you do bending films?

It is not unusual to have a thoracic compensatory curve with a structural lumbar curve to my knowledge. What kind of doctor was this? I am guessing this was not an experienced orthopedic surgeon who knows spine. None of this is making sense if you are reporting it accurately.

The surgeon who said he would only fuse the structural curve is correct as far as I know. I would never allow a surgeon to fuse a non-structural curve on my kids.

So your lumbar was 36* at maturity and progressed to surgical range in how many years?

I hope you get some competent opinions from now on.

And finally, yes, Linda can answer this. :-)

danicaf
05-28-2014, 03:42 PM
The second opinion was from a surgeon listed with the SRS. He is a neurosurgeon, as well as an orthopedic surgeon. He recommended fusing me from T2 or T3 to the pelvis, which would hit both curves. He ordered bending films which, I'm assuming, will bear out that my lumbar is indeed the structural curve.

I was around 15 when I stopped growing, and 5' 2 3/4" tall. I am now 55 and 5' 1", in the morning. So, I have lost almost 2 inches in height. I know we shrink as we get older but this loss in height came on pretty quickly.

The first surgeon I saw did his fellowship with Dr. DeWald from Rush in Chicago. He wanted me to get the second opinion from DeWald but my insurance sent me to Loyola. The original surgeon wants to perform a minimally invasive surgery and only fuse me T5 to L4 or 5. The second surgeon from Loyola doesn't believe that minimally invasive techniques are appropriate for this type of surgery and that the corrections are poor. He also feels not to fuse to the pelvis would only lead to revision down the road.

I think I'll seek that third opinion from Dr. DeWald at Rush.

Diane

Pooka1
05-28-2014, 03:54 PM
Well I am dying to hear what Linda says. And also what Dr. DeWald says, especially if you relate the statements from the other surgeons that you related here. It just doesn't make any sense. Could the second surgeon have said your thoracic curve is now ALSO structural? It seems like some single structural curves become double structural curves if not fused in time. You probably only originally had a structural lumbar curve and a compensatory thoracic curve.

danicaf
05-28-2014, 06:36 PM
Well I am dying to hear what Linda says. And also what Dr. DeWald says, especially if you relate the statements from the other surgeons that you related here. It just doesn't make any sense. Could the second surgeon have said your thoracic curve is now ALSO structural? It seems like some single structural curves become double structural curves if not fused in time. You probably only originally had a structural lumbar curve and a compensatory thoracic curve.

Surgeon #2 was pretty insistent that my structural curve was thoracic. I liked everything else he had to say, well, except fusing me to the pelvis...that I didn't care for too much.

I have xrays and an MRI that I need to attach. I find them distressing to look at...I look much better on the outside!

Pooka1
05-28-2014, 08:52 PM
Surgeon #2 was pretty insistent that my structural curve was thoracic.

Yes but did he say your lumbar was not also structural?

danicaf
05-28-2014, 09:34 PM
No, he felt my lumbar was the compensatory curve.

LindaRacine
05-28-2014, 09:35 PM
Have you had bending films yet? Without them, there's no way to be sure that either curve is compensatory.

--Linda

Pooka1
05-29-2014, 06:07 AM
These comments from these surgeons make little sense in my opinion. How can he think the lumbar was compensatory when you were treated for a structural lumbar as an adolescent and didn't have much of a thoracic curve at that point? Structural curves don't magically become compensatory just because another curve becomes structural. Furthermore the lumbar is still the larger curve. To say what he said he has completely left the reservation on curve classification.

This makes NO sense.

danicaf
05-29-2014, 08:19 AM
Linda: I have an order for bending x-rays, additional MRI views, a CAT scan and a stress test.

Sharon: I totally agree. I told him the lumbar curve was structural and he told me I was wrong. I called my mother to ask what she remembered and she agreed it was a lumbar curve all those years ago. Now I'm wondering he if was looking at my films? He did not look at the films or MRI in the examining room. You're right, it is confusing.

rohrer01
05-29-2014, 10:28 AM
Diane,

Welcome. I have a very high and tight structural curve that goes into my cervical vertebrae. I did develop a second structural curve that used to be compensatory. It can happen. I believe your doctor got them turned around. However, in my case, the original compensatory curve is quickly catching up in size to my primary structural curve. They are now within 5o of each other. I won't be surprised if the compensatory curve doesn't pass the structural curve in magnitude. This curve goes into my lumbar, ending at about L2. If it does pass in magnitude and I went to a fresh doctor without giving a history (I know you didn't do that), I'm pretty confident that s/he would insist that the lower curve was the original curve since the lower curve is a right thoracic curve. A right thoracic curve is the most common curve type.

So my question to you is: Is the compensatory thoracic curve a convex right curve? If it is, then this may be why he is insistent that it is the original structural curve despite being slightly smaller in magnitude.

danicaf
05-29-2014, 07:17 PM
Diane,

Welcome. I have a very high and tight structural curve that goes into my cervical vertebrae. I did develop a second structural curve that used to be compensatory. It can happen. I believe your doctor got them turned around. However, in my case, the original compensatory curve is quickly catching up in size to my primary structural curve. They are now within 5o of each other. I won't be surprised if the compensatory curve doesn't pass the structural curve in magnitude. This curve goes into my lumbar, ending at about L2. If it does pass in magnitude and I went to a fresh doctor without giving a history (I know you didn't do that), I'm pretty confident that s/he would insist that the lower curve was the original curve since the lower curve is a right thoracic curve. A right thoracic curve is the most common curve type.

So my question to you is: Is the compensatory thoracic curve a convex right curve? If it is, then this may be why he is insistent that it is the original structural curve despite being slightly smaller in magnitude.

Hi rohrer,

You are correct, my lumbar curves to the left and the thoracic curves to the right. Perhaps this is the cause of all the confusion. He said it would be a rare case if my lumbar levoscoliosis were the structural curve. Maybe he thought I was one of those people who discovered they had scoliosis later in life and didn't know which way they curved. There was so much information being passed back and forth I decided to let it slide for the time being. I would love to post my xrays but I'm having a tough time loading them onto my computer. I have enlisted the aid of my tech savvy, 19 year old son but even he too is having a trouble with the disc from the doctor.

I have read about your unusually high curve on the forum. Neck pain really trumps all. I have had neck pain, on and off, over the years and I hate when my head feels like a giant bowling ball (I'm of Eastern European descent so I really do have a large noggin!)

Thanks for the reply and the welcome!

Diane

rohrer01
05-29-2014, 10:15 PM
You're welcome, Diane.

Left convex primary curves are "rare" in comparison to right curves. So your doctor is right about it being rare. That doesn't make it not true just because it is rare. I hope you get to the bottom of things and can get some help.

There are a few of us "lefties" on here. :-)

Take Care,
Rohrer01

Pooka1
05-30-2014, 08:52 AM
Actually of the structural lumbars, aren't most of them left? Most thoracic curves are right.

KathK
05-30-2014, 09:52 PM
Hi,
My understanding matches Sharon's. I thought I had read that the majority of structural lumbar curves were to the left. I believe that the majority of structural thoracic and thoracolumbar curves are to the right.

When I had finished growing in my teen years, my right thoracolumbar curve had measured at 40 degrees. At 43 years of age, when I saw a surgeon, he said I had a 70 degree right lumbar curve. I was surprised to have my curve labelled as lumbar. (The apex of my curve had lowered, so technically, he might have been right.) But, when I consulted with Dr Lenke and he called me out immediately as a right thoracolumbar, I knew he was the surgeon for me! :-).

I hope you can get your questions resolved. I, too, would want a clear and consistent understanding of which curve was structural and which was compensatory.

Kathy

rohrer01
05-31-2014, 09:25 AM
Actually of the structural lumbars, aren't most of them left? Most thoracic curves are right.

That may be correct, I don't know. BUT, if he "sees" a right thoracic of any significant degree, he may assume it came first. I fully expect my compensatory curve to bypass my structural curve in a matter of a couple of years, if it hasn't already. Diane's may just well do the same thing making it "look" like the first curve. It has already increased significantly since her first diagnosis and her early records are missing I'm guessing?

danicaf
06-01-2014, 08:21 PM
Hi,
My understanding matches Sharon's. I thought I had read that the majority of structural lumbar curves were to the left. I believe that the majority of structural thoracic and thoracolumbar curves are to the right.

When I had finished growing in my teen years, my right thoracolumbar curve had measured at 40 degrees. At 43 years of age, when I saw a surgeon, he said I had a 70 degree right lumbar curve. I was surprised to have my curve labelled as lumbar. (The apex of my curve had lowered, so technically, he might have been right.) But, when I consulted with Dr Lenke and he called me out immediately as a right thoracolumbar, I knew he was the surgeon for me! :-).

I hope you can get your questions resolved. I, too, would want a clear and consistent understanding of which curve was structural and which was compensatory.

Kathy

Hi Kathy,

I hope I get my questions answered and find a surgeon I'm totally comfortable with. Perhaps Dr. DeWald will be that surgeon. As Sharon mentioned earlier, my early records are gone, non-existent. BUT...I know I had a lumbar curve. I was told to go on and live my life after I finished growing. My poor mother, who is in her eighties, feels guilty that I didn't keep seeing an orthopedic doctor but for many years there was no need. Now, however, I have almost daily pain and it is becoming very tiresome. I love to cook but if I'm on my feet all day and then try cooking for several more hours my back will be in screaming pain.

I noticed that your lumbar is fused to the pelvis. Do you mind if I ask how you feel about that? Loss of flexibility worries me no end. I'm very active and would like to continue to be so (although pain seems to be taking a big chunk out of my ability to stay active.) Sometimes I feel like I'm in a no win situation.

Diane

KathK
06-04-2014, 12:36 PM
Hi Diane,

My heart goes out to you. I know what you mean by feeling like you're in a "no win" situation. In my experience, you are truly in the toughest part of the journey right now! Trying to find the right surgeon and trying to understand the the different surgical approaches that are proposed is very stressful. But, I do believe that finding the right surgeon is of the utmost importance. So, keep questioning, keep consulting and keep researching until you know in your gut that you have found the right surgeon for you.

I had to accept the fact that I will never have a normal spine. As Sharon says, "it's off the table". My choices were life with a deformed spine that would, most likely, continue to become more deformed or life with a fused spine. The first choice (deformed spine) we all know very well, but the second choice (fused spine) is an unknown to us. So, of course, we question what life "in a fused spine" will be like. I will try to relay my experience to you.

I do not feel greatly limited by my fusion, even though it extends to the sacrum. I work full time, parent full time :-), and travel frequently (even to Europe). Yes, there are activities I chose to no longer do (run, ride roller coasters, lift heavy items), but I don't feel a sense of loss over those activities. The one thing I do miss is yoga. But, I can do most everything I want to do in my daily life. If I pick something up off of the floor, I do lower down on one knee and lean forward to pick it up instead of bending completely over. That would probably be the only time I would appear different than others. I do not have pain.

I used to wonder if I would EVER have a day where I didn't think about my back, but I have now HAD those days!

Please PM me if you have specific questions about activities. I will definitely try to answer!

Keep up the good work!
Kathy

golfnut
06-08-2014, 07:48 PM
Ditto to what Kathy said. I totally agree with everything she said.

danicaf
06-10-2014, 07:29 PM
Hi Diane,

My heart goes out to you. I know what you mean by feeling like you're in a "no win" situation. In my experience, you are truly in the toughest part of the journey right now! Trying to find the right surgeon and trying to understand the the different surgical approaches that are proposed is very stressful. But, I do believe that finding the right surgeon is of the utmost importance. So, keep questioning, keep consulting and keep researching until you know in your gut that you have found the right surgeon for you.

I had to accept the fact that I will never have a normal spine. As Sharon says, "it's off the table". My choices were life with a deformed spine that would, most likely, continue to become more deformed or life with a fused spine. The first choice (deformed spine) we all know very well, but the second choice (fused spine) is an unknown to us. So, of course, we question what life "in a fused spine" will be like. I will try to relay my experience to you.

I do not feel greatly limited by my fusion, even though it extends to the sacrum. I work full time, parent full time :-), and travel frequently (even to Europe). Yes, there are activities I chose to no longer do (run, ride roller coasters, lift heavy items), but I don't feel a sense of loss over those activities. The one thing I do miss is yoga. But, I can do most everything I want to do in my daily life. If I pick something up off of the floor, I do lower down on one knee and lean forward to pick it up instead of bending completely over. That would probably be the only time I would appear different than others. I do not have pain.

I used to wonder if I would EVER have a day where I didn't think about my back, but I have now HAD those days!

Please PM me if you have specific questions about activities. I will definitely try to answer!

Keep up the good work!
Kathy

Hi Kathy,

Thanks for the reply. I love to read that you do not have pain!! Today is a big time pain day for me. It's cold and rainy in Chicago and my back is killing me! I would love a day when I don't think about my back. As far as fusion is concerned, I'm starting to feel it couldn't be any worse then the pain I'm in today; and I have a high pain tolerance like most people on this forum.

I know Sharon says normal is "off the table" and I know this to be true but I'm having a hard time accepting it. When I told my brother about the surgery the first thing he said to me was I would probably be eligible for disability. I have never thought of myself as disabled and refuse to view myself in those terms. I know he meant well but hearing those words hit me hard. Having said this, I'm always happy to hear others who have had the surgery are doing well and living full, productive lives.

Diane

golfnut
06-10-2014, 07:55 PM
Most people do not understand scoliosis surgery and how it can improve one's condition. Very few of us who have had surgery are "disabled". The word I hated and never used about myself was "deformed". Obviously, I was deformed but it was hard to admit. I now have a nice, straight back with no rib hump and no pain and I am not deformed or disabled. It definitely took well over a year and probably closer to two years before I could say that I had no minor aches. Surgery was one of the best decisions that I've ever made.

danicaf
06-10-2014, 08:04 PM
Most people do not understand scoliosis surgery and how it can improve one's condition. Very few of us who have had surgery are "disabled". The word I hated and never used about myself was "deformed". Obviously, I was deformed but it was hard to admit. I now have a nice, straight back with no rib hump and no pain and I am not deformed or disabled. It definitely took well over a year and probably closer to two years before I could say that I had no minor aches. Surgery was one of the best decisions that I've ever made.

Karen,

I have seen your photos and you look great! I never felt deformed until recently. Actually, I thought it was just middle age making my waist look wider and my back larger. Turns out my curves were progressing and THAT is making me look this way. The last surgeon I saw said I would probably be 3 inches taller after surgery. Most people don't know I even have scoliosis. My curves are pretty evenly balanced. However, if you saw my bare back there would be no question. One thing that is bothering me is this permanent bruise/skin discoloration that I now have on my back. Have you ever read anything about this type of problem? Maybe I should start a new thread.

Diane

danicaf
06-10-2014, 08:08 PM
Most people do not understand scoliosis surgery and how it can improve one's condition. Very few of us who have had surgery are "disabled". The word I hated and never used about myself was "deformed". Obviously, I was deformed but it was hard to admit. I now have a nice, straight back with no rib hump and no pain and I am not deformed or disabled. It definitely took well over a year and probably closer to two years before I could say that I had no minor aches. Surgery was one of the best decisions that I've ever made.

Karen,

My favorite part of your golf swing video is the part where you reach down to pick up your tee! Your back looks beautiful.

Diane

LindaRacine
06-10-2014, 08:12 PM
Karen,

I have seen your photos and you look great! I never felt deformed until recently. Actually, I thought it was just middle age making my waist look wider and my back larger. Turns out my curves were progressing and THAT is making me look this way. The last surgeon I saw said I would probably be 3 inches taller after surgery. Most people don't know I even have scoliosis. My curves are pretty evenly balanced. However, if you saw my bare back there would be no question. One thing that is bothering me is this permanent bruise/skin discoloration that I now have on my back. Have you ever read anything about this type of problem? Maybe I should start a new thread.

Diane
Hi Diane...

I don't recall ever seeing a discoloration or bruise on someone who hadn't been injured. Where is it?

--Linda

danicaf
06-10-2014, 09:33 PM
Hi Diane...

I don't recall ever seeing a discoloration or bruise on someone who hadn't been injured. Where is it?

--Linda

Hi Linda,

Mid back, right hand side of my spine. My Internist told me it was simple skin discoloration, due to age???? I'm 55 and have had it for about a year. I thought perhaps it was due to the scoliosis and the shape of my back.

Diane

danicaf
06-10-2014, 10:03 PM
Hi Diane...

I don't recall ever seeing a discoloration or bruise on someone who hadn't been injured. Where is it?

--Linda

Linda,

I should also add that the physical therapist I was seeing was the first person to notice the discoloration and she felt it looked like a bruise, which it does. I don't know why my doctor dismissed it so casually. It doesn't hurt. I just wish I knew why it was there.

Diane

Confusedmom
06-16-2014, 10:09 PM
Regarding the spot on your back, could it be from where your back hits the chair? Prior to my surgery, my back was getting so deformed that certain spots would really grate against the backs of chairs. That could cause bruising over time, depending on where/how much you sit.

Regarding structural curves, I had a structural lumber curve and compensatory thoracic. I had both fused even though my thoracic would straighten with bending films. The reason was the surgeons felt I would look unbalanced following surgery if I didn't. Also, my compensatory was 45 degrees and I was 40, so there was no guarantee it would straighten on its own.

I saw six surgeons before I decided to have surgery. It's always good to continue to get advice until you have all of your questions answered.

danicaf
06-16-2014, 11:04 PM
Regarding the spot on your back, could it be from where your back hits the chair? Prior to my surgery, my back was getting so deformed that certain spots would really grate against the backs of chairs. That could cause bruising over time, depending on where/how much you sit.

Regarding structural curves, I had a structural lumber curve and compensatory thoracic. I had both fused even though my thoracic would straighten with bending films. The reason was the surgeons felt I would look unbalanced following surgery if I didn't. Also, my compensatory was 45 degrees and I was 40, so there was no guarantee it would straighten on its own.

I saw six surgeons before I decided to have surgery. It's always good to continue to get advice until you have all of your questions answered.

I do spend quite a lot of time in the car. When I sit at home I tend to sit at the edge of the seat...comes with being short and that is the only way I feel comfortable sitting. Also, if I'm sitting at home watching TV I always have a pillow behind my back. I notice when I'm driving that I'm now sitting twisted with my hips on an angle. When I notice that I'm doing this I straighten myself out. I think the bruise is from where my back hits the drivers seat and since my back is no longer flat I'm sporting a lovely bruise.

I am going for a third opinion, as soon as our new insurance goes into effect.

LindaRacine
06-17-2014, 11:20 AM
I've seen some huge rib humps, but have never seen a corresponding bruise, or hear any surgeon mention one. Also, it seems to me that if you were traumatizing the tissue enough to cause a constant bruise, it would be painful to the touch.

--Linda

danicaf
06-17-2014, 12:21 PM
I've seen some huge rib humps, but have never seen a corresponding bruise, or hear any surgeon mention one. Also, it seems to me that if you were traumatizing the tissue enough to cause a constant bruise, it would be painful to the touch.

--Linda

There is no pain by the "bruised" area. The discoloration isn't brown, it is dark.