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cathydownunder
02-13-2014, 12:53 AM
I don't post here often, but am an avid "reader" however I do have a question which I can't find any related threads for....
At what point is a rigid curve considered too inflexible for a decent correction? yesterday I had side bending x rays taken so my surgeon could see how much flexibility I have. My right bend (the way my thoracolumbar curve sits) was quite easy as I expected, however the left bending just went nowhere! I'm very stiff so could hardly bend and my right uptilted hip doesn't allow much anyway.
I still had the same curve only slightly reduced and it only straightened out above the curve around T6.
BTW I have fusions/disc replacement L3-S1 so was looking for flexibility above those levels only.
Opinions, thoughts anyone?

Cathy

Pooka1
02-13-2014, 08:13 AM
Hi Cathy,

That's an interesting question. If you emailed it to your surgeon, I bet he might answer.

There was some discussion a while back about a study where they had the people do PT or maybe traction in the immediate period prior to surgery to make the spine more flexible. I can only assume the purpose was to get a better correction. Certainly traction works to straighten a spine ahead of a fusion... there was one case on the forum of a child with a very large curve who got a nice correction after being in traction for several weeks prior.

Also as I understand it, anterior releases (taking out the discs from the front) increases flexibility ahead of a fusion. And the modern segmented instrumentation allows vast amounts of leverage to rotate individual vertebra. It is the rotation that produces the lateral curve due to anterior overgrowth in IS as far as I know. That's why when you lever the vertebra back into position, the spine can be hypo-kyphotic because the front of the vertebra are longer than the back.

rohrer01
02-13-2014, 10:05 AM
Hmmm, Sharon.
That is interesting about creating hypokyphosis. That's what bracing does to kids. For some reason, I always thought that they could manually pull the spine out into a more normal kyphosis during surgery. Now, thinking about it, that would create some wicked wedging of the discs. But of course, once a fusion is done, discs no longer function. It WOULD create much wider nerve root openings since those are on the dorsal aspect of the vertebral body. That could free up a lot of pain if there are pinched nerves in there. Sorry, I'm thinking out loud.

Cathy, I have a VERY stiff curve that goes from about C7 to T6. I haven't had surgery. I have seen videos where, in cases similar to mine, they actually deflate a lung to make room in the thoracic cavity, go in through small incisions in the sides between the ribs and actually remove the discs and replace them with bone chips (they are place holders and serve to make the fusion solid between the vertebrae). Then when they go in to do the fusion from the back, the spine is very flexible and they straighten it up. I would think that they could do something like that with a TL curve. I'm sure that some of these older folks that have surgery are pretty stiff. I would ask your doctor about it. Maybe the moderator will pop in. She is very knowledgeable about the different procedures that they do.

Best wishes!

jrnyc
02-13-2014, 04:09 PM
Dr Boachie used to deflate a lung during surgery,
but he stopped doing that about 6 years ago that i know of...
i do not know if he makes exceptions for particularly bad
cases...

jess...and Sparky

golfnut
02-13-2014, 04:44 PM
I had a large curve which was inflexible but my surgeon was able to get a good correction. I think the purpose of the osteotomies is to get a better correction with a stiff spine.

cathydownunder
02-13-2014, 07:09 PM
thanks for the responses.
my surgeon and I've had a few "what if'" discussions on possible surgical approaches and scenarios and in my case he favours posterior only with osteotomies and pelvic fixation.
he also stated at one time that I could self fuse which would reduce my pain and need for surgery altogether, so I"m wondering if this stiffness and inflexibility is just that?
Ive been seeing my ortho at least twice yearly for over 8 years and we do have a good rapport which helps a lot when I throw sometimes crazy questions at him lol.
No doubt I'll have a few more when I see him again in 2 weeks time. :rolleyes:

rohrer01
02-14-2014, 02:42 PM
I have a friend that "auto-fused". Her problem isn't scoliosis, but severe stenosis and severe listhesis. She's in or was in a TON of pain but was afraid surgery would make it worse. She's pretty much wheelchair bound now. But that's because the nerves are all pinched off. She's just "waiting" for the nerves to die off. At that point I'm sure she'll be paralyzed. She already has a lot of numbness.

Your case is totally different. Auto-fusion, if your nerves aren't pinched, just saves a surgery like your doctor said. But, you are stuck that way. If the doctor does it, he can align your spine properly to give you the most function.

I've had a very stiff curve for a long time. I went to a chiropractor that broke it loose. It progressed, of course, but not a lot. Because the extreme stiffness is mainly in the area between my shoulder blades I don't seem to miss the flexibility so much. When the curve was released by the chiro, ALL of my doctors said DO NOT GO BACK. It started popping and crunching. I can still bring my shoulders back and get a "pop" now and then. For the most part it is stiffening back up pretty rapidly. I do get pain there, especially if it's pressed on. I don't know if the process of auto-fusion is painful or not. I have bone ache and a sensation that I need to pop my back or neck and I can't. My neck is stiffening up, too. When the chiro did neck adjustments it would send STRONG electrical shocks down both arms. It felt like lightening bolts were going to fly out of my fingertips! My PM&R guy was horrified when I told him that. No more chiro for me. Funny, the doctors were all pro-chiro for pain management...until those things happened.

The point of all that is to say that I'm getting very stiff, too. I don't know if autofusion will ever take place. In my case there are pinched nerves in my cervical and lumbar spine. So, I don't think I want to let that process go all the way through. Especially scary is that I have a bone spur on C5 IN the spinal canal area growing toward the spinal cord. It's not impinging on the cord, yet. All of the cervical discs are dry and slightly bulgy. My range of motion in my neck seems to decrease by leaps and bounds. My neck hurts constantly and I'm just taking it one day at a time, pretty much like everyone else.

So I guess my opinion on letting your spine fuse itself would be, if your doctor feels that your alignment is good and a surgery wouldn't improve your pain/function, why go through a surgery? If it's an aesthetic thing with alignment, it's between you and your doctor how much intervening you want to do. Really, under any circumstance it's between you and your doctor. Ask him if the process is more painful in the long run than having the fusion surgery.

I hope you get things figured out. Maybe you'll have some new ideas for questions when you go in next time.

Take care!

susancook
02-14-2014, 04:59 PM
I have a friend that "auto-fused". Her problem isn't scoliosis, but severe stenosis and severe listhesis. She's in or was in a TON of pain but was afraid surgery would make it worse. She's pretty much wheelchair bound now. But that's because the nerves are all pinched off. She's just "waiting" for the nerves to die off. At that point I'm sure she'll be paralyzed. She already has a lot of numbness.

Your case is totally different. Auto-fusion, if your nerves aren't pinched, just saves a surgery like your doctor said. But, you are stuck that way. If the doctor does it, he can align your spine properly to give you the most function.

I've had a very stiff curve for a long time. I went to a chiropractor that broke it loose. It progressed, of course, but not a lot. Because the extreme stiffness is mainly in the area between my shoulder blades I don't seem to miss the flexibility so much. When the curve was released by the chiro, ALL of my doctors said DO NOT GO BACK. It started popping and crunching. I can still bring my shoulders back and get a "pop" now and then. For the most part it is stiffening back up pretty rapidly. I do get pain there, especially if it's pressed on. I don't know if the process of auto-fusion is painful or not. I have bone ache and a sensation that I need to pop my back or neck and I can't. My neck is stiffening up, too. When the chiro did neck adjustments it would send STRONG electrical shocks down both arms. It felt like lightening bolts were going to fly out of my fingertips! My PM&R guy was horrified when I told him that. No more chiro for me. Funny, the doctors were all pro-chiro for pain management...until those things happened.

The point of all that is to say that I'm getting very stiff, too. I don't know if autofusion will ever take place. In my case there are pinched nerves in my cervical and lumbar spine. So, I don't think I want to let that process go all the way through. Especially scary is that I have a bone spur on C5 IN the spinal canal area growing toward the spinal cord. It's not impinging on the cord, yet. All of the cervical discs are dry and slightly bulgy. My range of motion in my neck seems to decrease by leaps and bounds. My neck hurts constantly and I'm just taking it one day at a time, pretty much like everyone else.

So I guess my opinion on letting your spine fuse itself would be, if your doctor feels that your alignment is good and a surgery wouldn't improve your pain/function, why go through a surgery? If it's an aesthetic thing with alignment, it's between you and your doctor how much intervening you want to do. Really, under any circumstance it's between you and your doctor. Ask him if the process is more painful in the long run than having the fusion surgery.

I hope you get things figured out. Maybe you'll have some new ideas for questions when you go in next time.

Take care!
You say that a chiropractor "broke loose" your one. That sounds painful, dangerous, and scary! Exactly what did he/she do? Susan

babyboomer16
02-14-2014, 05:06 PM
I have a friend that "auto-fused". Her problem isn't scoliosis, but severe stenosis and severe listhesis. She's in or was in a TON of pain but was afraid surgery would make it worse. She's pretty much wheelchair bound now. But that's because the nerves are all pinched off. She's just "waiting" for the nerves to die off. At that point I'm sure she'll be paralyzed. She already has a lot of numbness.

Your case is totally different. Auto-fusion, if your nerves aren't pinched, just saves a surgery like your doctor said. But, you are stuck that way. If the doctor does it, he can align your spine properly to give you the most function.

I've had a very stiff curve for a long time. I went to a chiropractor that broke it loose. It progressed, of course, but not a lot. Because the extreme stiffness is mainly in the area between my shoulder blades I don't seem to miss the flexibility so much. When the curve was released by the chiro, ALL of my doctors said DO NOT GO BACK. It started popping and crunching. I can still bring my shoulders back and get a "pop" now and then. For the most part it is stiffening back up pretty rapidly. I do get pain there, especially if it's pressed on. I don't know if the process of auto-fusion is painful or not. I have bone ache and a sensation that I need to pop my back or neck and I can't. My neck is stiffening up, too. When the chiro did neck adjustments it would send STRONG electrical shocks down both arms. It felt like lightening bolts were going to fly out of my fingertips! My PM&R guy was horrified when I told him that. No more chiro for me. Funny, the doctors were all pro-chiro for pain management...until those things happened.

The point of all that is to say that I'm getting very stiff, too. I don't know if autofusion will ever take place. In my case there are pinched nerves in my cervical and lumbar spine. So, I don't think I want to let that process go all the way through. Especially scary is that I have a bone spur on C5 IN the spinal canal area growing toward the spinal cord. It's not impinging on the cord, yet. All of the cervical discs are dry and slightly bulgy. My range of motion in my neck seems to decrease by leaps and bounds. My neck hurts constantly and I'm just taking it one day at a time, pretty much like everyone else.

So I guess my opinion on letting your spine fuse itself would be, if your doctor feels that your alignment is good and a surgery wouldn't improve your pain/function, why go through a surgery? If it's an aesthetic thing with alignment, it's between you and your doctor how much intervening you want to do. Really, under any circumstance it's between you and your doctor. Ask him if the process is more painful in the long run than having the fusion surgery.

I hope you get things figured out. Maybe you'll have some new ideas for questions when you go in next time.

Take care!
Rohrer, I know you have probably talked about this before, but my question is: Why haven't you had any surgery done? Just can't remember if you have talked about this. You're such a supportive person, but you seem to be in terrible pain. However, I have had lots of surgeries, and I still suffer from pain. Just wondering?
Cathy, what do you mean by a right uplifted hip? I had a fusion in 2006, (L3/4 L4/5) and I ended up with "flat back syndrome". And my right hip was higher than the left hip.(I was bending to the left). I am kind of confused about your question. Sorry, I'm not much help. But I certainly wish you the best. Keep coming back here so we know how you're doing. Warm wishes, Linda

KathK
02-14-2014, 08:00 PM
Hi Cathy,
I also had/have a right thoracolumbar curve. My curve was also very stiff. Two years before I had surgery, when my curve measured 65 degrees, my bending X-ray (done by Dr. Boachie) only showed the curve "bent out" to 59 degrees.

However, when I had my surgery with Dr Lenke, he was able to achieve a 50% correction. My understanding matches what Karen posted, namely that the osteotomies (4) are what allowed Dr Lenke to get correction beyond that indicated by my bending X-ray.

You might want to ask what your surgeon's expectations are for rotational correction. I don't think that my rotation was corrected much. But, I am still quite happy with my results.

Kathy

rohrer01
02-15-2014, 12:25 PM
Susan and Linda,
I don't want to take over this lady's thread. So briefly: The chiro did a drop table manipulation where she pushed on my curve on either side of my spine with both palms while the table drops down. This caused a moment of complete hypokyphosis, which I already have...had I known... I wouldn't have let her do that. She SHOULD have known about the hypokyphosis because of the sagittal x-rays that she took. I'm sure it probably made that worse, but no one even talked about the hypokyphosis until after that.

I've never had surgery because my curve isn't progressing rapidly and not deemed large enough. I don't know what the scoli doctor will say when he finds out that my heart is malformed. That doesn't usually happen with curves as small as mine. At least the heart is functioning normally. So, my guess is that he will still not want to do surgery.

Most of my pain comes from my muscle diseases and DDD in my lower spine. The arthritis in my neck is extremely painful, but that's just what arthritis does. The neurologist says I'm a mystery. He thought for sure that I had muscular dystrophy. The tests he performed didn't confirm that, they were all negative. So off to the geneticist I go.

I do have scoliotic pain because my spine hurts in those areas. But, for me at least, I think the scoliosis is more of a red herring and there are more serious things going on. Although, the smooshed heart is kind of serious, don't you think?

Back to the subject at hand:

I don't know if autofusion will ever happen to me if left alone. I don't have any areas of bone on bone which, as I understand it, is what triggers autofusion. I do NOT want that to happen to my spine because there is nerve involvement. I think my friend is insane for going through what she has been going through for YEARS/decades! She knows paralysis will come with what she's doing. But, everyone makes their own choices. She was a surgical tech and helped in many of those surgeries. So actually "seeing" what they do has scared her beyond belief. Its too late to do anything for her now, anyway, because the process is too far underway. I've never tried to sway her to have surgery. I don't feel it's my place. If I did try to persuade her and something terrible happened as a result, I would feel responsible. That's why I try never to talk anyone into doing or NOT doing things. I just offer what I know and leave it at that.

babyboomer16
02-15-2014, 04:12 PM
Susan and Linda,
I don't want to take over this lady's thread. So briefly: The chiro did a drop table manipulation where she pushed on my curve on either side of my spine with both palms while the table drops down. This caused a moment of complete hypokyphosis, which I already have...had I known... I wouldn't have let her do that. She SHOULD have known about the hypokyphosis because of the sagittal x-rays that she took. I'm sure it probably made that worse, but no one even talked about the hypokyphosis until after that.

I've never had surgery because my curve isn't progressing rapidly and not deemed large enough. I don't know what the scoli doctor will say when he finds out that my heart is malformed. That doesn't usually happen with curves as small as mine. At least the heart is functioning normally. So, my guess is that he will still not want to do surgery.

Most of my pain comes from my muscle diseases and DDD in my lower spine. The arthritis in my neck is extremely painful, but that's just what arthritis does. The neurologist says I'm a mystery. He thought for sure that I had muscular dystrophy. The tests he performed didn't confirm that, they were all negative. So off to the geneticist I go.

I do have scoliotic pain because my spine hurts in those areas. But, for me at least, I think the scoliosis is more of a red herring and there are more serious things going on. Although, the smooshed heart is kind of serious, don't you think?

Back to the subject at hand:

I don't know if autofusion will ever happen to me if left alone. I don't have any areas of bone on bone which, as I understand it, is what triggers autofusion. I do NOT want that to happen to my spine because there is nerve involvement. I think my friend is insane for going through what she has been going through for YEARS/decades! She knows paralysis will come with what she's doing. But, everyone makes their own choices. She was a surgical tech and helped in many of those surgeries. So actually "seeing" what they do has scared her beyond belief. Its too late to do anything for her now, anyway, because the process is too far underway. I've never tried to sway her to have surgery. I don't feel it's my place. If I did try to persuade her and something terrible happened as a result, I would feel responsible. That's why I try never to talk anyone into doing or NOT doing things. I just offer what I know and leave it at that.
Rohrer, thank-you so much for explaining all those things to us. You have many , many issues! I understand fully now why you haven't had surgery. And I understand arthritis very well! It is very painful.
Cathy~~I liked the way rohrer explained the issue of auto fusion. I hadn't heard of it before. I have heard of alkolying spodylosis. (Sp). But that is different in other ways. You know, I am so blessed to have found such a bunch of well informed and caring people on this site. It helps so much in reading the knowledge you have all researched and payed it forward. Knowledge is power. We all are dealing with serious spine issues. And, although I'm eight and a half months out, I have a long to go. Cathy, you hang in there and I hope you get answers that help you. Truly, Linda

rohrer01
02-15-2014, 05:06 PM
Ankylosing Spondylitis is an awful autoimmune disorder. Autofusion of the spine is only ONE of the many horrible things it does. It is in a class similar to rheumatoid arthritis. This immune system attacks your own body and joints. It's a system wide disease. My young girlfriend (in her early 20's) was just diagnosed with it. It's one of those diseases where you just HURT all of time and people start to think you're a hypochondriac. Here is the Wikipedia definition. It has a picture of what it does to the skeleton:

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

The really sad thing for my friend is that she is so young. One treatment is methotrexate, a chemotherapy type drug, that is used to terminate pregnancies such as ectopic/tubal pregnancies to preserve the woman's fallopian tubes. Any embryo or fetus that may be present when this treatment is started WILL terminate. That is so sad for a young woman to come to terms with. Her pain is severe in her shoulders right now. I hope they don't have to use this drug with her.

Cathy, I hope this isn't the case with you. There is one woman who has AS and is a couple of months out from spinal fusion surgery for scoliosis. There is a genetic test that can be done. I didn't read the entire Wiki article, but I "think" this is a rare disease. It seems so odd that I keep meeting or know people with these rare occurrences, such as my other friend with the fused spine.

flerc
02-15-2014, 05:53 PM
It seems, therefore, that an exclusion of a diet containing complex carbohydrates such as starch, but not simple carbohydrate-containing foods such as glucose or sucrose, might inhibit the growth of Klebsiella and could ameliorate the disease process and activity in patients with AS and CD.

http://www.hindawi.com/journals/jir/2013/872632/

cathydownunder
02-18-2014, 12:50 AM
Rohrer01
we seem to have similar issues going on....same curve size but different areas. also widespread DDD and arthritis....and I agree, this is the painful part! My pain doc has mentioned possible AS or RA....he's inclined to think I have some type of autoimmune disease. I have slightly elevated Rheumatoid Factor but not enough to make a definite diagnosis as I don't have the usual other markers. :confused: my surgeon gets frustrated also with all these other issues and has said to me many times it's impossible to know exactly what my pain generators are! makes me feel like a hypochondriac sometimes :(

Babyboomer,
my uptilted right hip is because my curve is thoracolumbar and I lean to the left which makes my pelvis uneven and raised on the right. also after living with this since diagnosis 40 years ago, my trunk muscle imbalance is quite marked....left side concave right side overdeveloped.

Cathy