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Jinseeker
03-05-2014, 12:16 PM
(Prior to reading, please view my signature for details of my scoliosis, age and xray)

So finally after 7 yrs since visiting my first ortho back in 2007 who did not recommend surgery I opted for a second opinion just yesterday. I am surprised to hear despite minimal pain and no progression my 2nd orthopedic surgeon I visited recommended surgery simply because 1) my thoracic curve was above 40 degrees, 2) the on-set of degenerative discs will be more susceptible to happening in my case. 3) It is better to fuse me now than to do it when I am older. He said when his patients turn 40 he doesn't want to perform fusion anymore because of the risks.

However, when I asked him if I didn't get spinal fusion I can come to him for a laminectomy/laminotomy in case I experience a degenerative/herniated disc when I am older. He recommends though that it is better in getting the fusion now since even though the lumbar discs are susceptible to degeneration as well, the wear and tear may only occur one one vertebrae segment as opposed to multiple in the case I don't have surgery and continue to live with my scoliotic deformity("I do not know if I agree with this or not, what do you people think?"). If I get surgery, he plans to fuse me all the way to L2.

So yet again, I am left with another gray area decision with the clock ticking against me and left confused as to how to decide and get on with this. This time the defining factor as I've always known it to be was not progression of my scoliosis, but degeneration of discs which may or may not even happen. I do not want to go into surgery based on some threat or fear that may never happen to me. I understand all spines normal or not degenerate as you age, and it is completely normal to experience a back that is stiffer and more painful as you age. Apart from that, I also know that degeneration of the disc is attributed to a lot of factors, and not just scoliosis. ex. hereditary, lifestyle habits, smoking, etc..

The DEFINING QUESTION that remains is whether my severe scoliosis would eventually lead to degenerative discs faster or slower than if I had spinal fusion to L2 or even L3 segment with possibly a slight residual lumbar curve afterwards.
My lumbar curve right now is still pretty straight and I do not have that much of a trunk shift. In fact, if you see me my head and torso is only slightly misaligned with my pelvis. The evaluation has to lie on whether my lumbar curve's discs will wear out faster trying to support a major thoracic curve vs a straighter thoracic spine but underneath the weight of a solid fusion.


- since exercise does help prevent degenerative discs from getting worse, would it be easier or harder to do back exercises to keep your lumbar(lower back) strong if you had been fused to L2?

- Does degenerative scoliosis stop progressing on its own after the vertebrae finally settles onto the adjacent one below because of the damaged weakening disc? or is it an ongoing "domino" effect process that will just keep progressing each year to no end?

- would there have been a published study somehow on the rate of degeneration of discs of patients with scoliosis vs that of the normal spine population?

- what is the likelihood of having a disc degeneration occur in the thoracic spine since I know the majority of all degeneration happens only in the lumbar area? (" I feel if even my thoracic discs seriously degenerate that is a sign that my ortho was correct all along and that I should just have surgery.")


So I can only ask help from all participants in this forum, post op and pre op to give me testimonials as to how they all are doing. I prefer to hear from those who had untreated severe thoracic curves like mine that continued to live a relatively pain free, degenerative disc problem free life all the way into their 50-60s and beyond. Also if anyone can link me any studies, research papers and surveys related to my questions would be really great. I feel the more I know, the more I can gauge whether surgery is really right for me and when I should really have it. Hope Linda would see and comment on my post as well.

To be honest IF I can attach a poll or survey in this forum I would but unfortunately I can't.

Thank you all, your help and wisdom is appreciated.

springchicken
03-05-2014, 06:41 PM
Hi Jinseeker,

I'm not able to answer your query as I don't fit the profile of who you're looking to talk to, but I was curious if you had suffered any disc degeneration?

I was surprised to read your story as I've gone to ortho surgeons all my life and was only recently told surgery could be an option for me. The others that I saw (all have specialized in scoliosis) recommended a conservative approach.

My curve was thoracolumbar which over the years would put a lot of pressure on my lowest vertabrae, nonetheless, the subject of disk degeneration as a reason for surgery, never came up. And my MRIs never showed disk degeneration (I'm 38), so I'm not sure it's always a likely outcome. The reason I went for surgery this year was because I had a lot of pain over the years and my curve had increased.

You might consider a second opinion since it was 7 years since you spoke with your last surgeon?

Good luck and I hope you are able to find more people to give you the insight you're looking for!

-Olivia

Pooka1
03-05-2014, 08:29 PM
He said when his patients turn 40 he doesn't want to perform fusion anymore because of the risks.

I'm getting some popcorn handy for when Linda might comment about this. :-)


If I get surgery, he plans to fuse me all the way to L2

Did he do bending films to determine it would be L2?


I do not want to go into surgery based on some threat or fear that may never happen to me.

Well, did he say that untreated curves usually get more disc herniations than normal spines?


The DEFINING QUESTION that remains is whether my severe scoliosis would eventually lead to degenerative discs faster or slower than if I had spinal fusion to L2 or even L3 segment with possibly a slight residual lumbar curve afterwards.
My lumbar curve right now is still pretty straight and I do not have that much of a trunk shift. In fact, if you see me my head and torso is only slightly misaligned with my pelvis. The evaluation has to lie on whether my lumbar curve's discs will wear out faster trying to support a major thoracic curve vs a straighter thoracic spine but underneath the weight of a solid fusion.

I agree you have identified the defining question.


Hope Linda would see and comment on my post as well.

I hope so too. She might have some answers to your questions.

LindaRacine
03-05-2014, 09:58 PM
(Prior to reading, please view my signature for details of my scoliosis, age and xray)

So finally after 7 yrs since visiting my first ortho back in 2007 who did not recommend surgery I opted for a second opinion just yesterday. I am surprised to hear despite minimal pain and no progression my 2nd orthopedic surgeon I visited recommended surgery simply because 1) my thoracic curve was above 40 degrees, 2) the on-set of degenerative discs will be more susceptible to happening in my case. 3) It is better to fuse me now than to do it when I am older. He said when his patients turn 40 he doesn't want to perform fusion anymore because of the risks.


I really don't get this. I can't see any advantage to having the surgery now. There's a reasonable chance you'll be able to avoid surgery altogether. And, even if you do have degenerative disc problems in the future, having a fusion now is a big step to take to try to avoid that. A large percentage of the population will have degenerative discs in their 50's and beyond. We don't fuse everyone to try to avoid that. Instead, you fix the problem when/if it actually occurs.



However, when I asked him if I didn't get spinal fusion I can come to him for a laminectomy/laminotomy in case I experience a degenerative/herniated disc when I am older. He recommends though that it is better in getting the fusion now since even though the lumbar discs are susceptible to degeneration as well, the wear and tear may only occur one one vertebrae segment as opposed to multiple in the case I don't have surgery and continue to live with my scoliotic deformity("I do not know if I agree with this or not, what do you people think?"). If I get surgery, he plans to fuse me all the way to L2.
While I'm sure there are cases where people with scoliosis have had successful decompressions, I've personally never seen one. Decompressions destabilize the spine, usually leading to more rapid progression of problems.



The DEFINING QUESTION that remains is whether my severe scoliosis would eventually lead to degenerative discs faster or slower than if I had spinal fusion to L2 or even L3 segment with possibly a slight residual lumbar curve afterwards.
My lumbar curve right now is still pretty straight and I do not have that much of a trunk shift. In fact, if you see me my head and torso is only slightly misaligned with my pelvis. The evaluation has to lie on whether my lumbar curve's discs will wear out faster trying to support a major thoracic curve vs a straighter thoracic spine but underneath the weight of a solid fusion.


Maybe they will, and maybe they won't. It really doesn't matter. I would NEVER allow my spine to be fused just to avoid the possibility of degenerative disc disease at a later date.



- since exercise does help prevent degenerative discs from getting worse, would it be easier or harder to do back exercises to keep your lumbar(lower back) strong if you had been fused to L2?


I personally think it would be more difficult with the fusion, but that's just my own personal opinion. Whether you decide to have surgery now, later, or never, I would do everything you can to keep your core strong.



- Does degenerative scoliosis stop progressing on its own after the vertebrae finally settles onto the adjacent one below because of the damaged weakening disc? or is it an ongoing "domino" effect process that will just keep progressing each year to no end?


I don't think you have degenerative scoliosis. I forgot to look and see how old you are, but degen scoli is thought to start around the age of 50. There's very little published about the natural history of degenerative scoliosis.



- would there have been a published study somehow on the rate of degeneration of discs of patients with scoliosis vs that of the normal spine population?


Not that I know of



- what is the likelihood of having a disc degeneration occur in the thoracic spine since I know the majority of all degeneration happens only in the lumbar area? (" I feel if even my thoracic discs seriously degenerate that is a sign that my ortho was correct all along and that I should just have surgery.")


Thoracic disc degeneration does occur, but it's usually not very painful, so you won't hear much about it.

If this were my decision to make, it would be easy. But, I can't know your pain, or other issues that might contribute to your decision.

The reasons I wouldn't have surgery if I were in your shoes:

*Once you have this surgery, there is no going back.

*A large percentage of adult scoliosis patients need more surgery later on. So, when you sign up for surgery, you could be signing up for a lot more down the line.

*We have a lot of patients, some of whom have huge curves, who are elderly and who have managed to avoid surgery their entire lives. So, it's not a sure thing that you'll eventually need surgery.

*If you do need surgery later on, it can be done when you need it (though with a slight increase in risk of complications) well into your 60's, 70's or even 80's.

Hope that helps.

Regards,
Linda

Pooka1
03-05-2014, 10:23 PM
I forgot to look and see how old you are, but degen scoli is thought to start around the age of 50. There's very little published about the natural history of degenerative scoliosis.

He's 29.
.
.
.

Jinseeker
03-06-2014, 01:44 AM
I forgot to mention one important thing my surgeon also mentioned that I may possibly get pulmonary problems later on in life if i didn't have the operation. Right now, I don't have any, and breathing is just fine. My lung capacity tests read normal.

@ pooka:

Did he do bending films to determine it would be L2?

- No he didn't. Just based on his experience from fusing thoracic spines, the best for mine would be L2, since L1 is the most tilted vertebrae it is not favorable to end a fusion there. He didn't even have one look at my back, or asked if i was a smoker( I am not btw ), he just looked at my x-rays. When I mentioned the complications and risks of fusion, he had little to say, and told me I would be out of the hospital within a week and have any physical restrictions lifted right away. In fact the topic of degenerative discs was brought up by me, not by the surgeon, which led him to admit that that was an actual complication later on in life.

I am also definitely not very flexible. If I bend down keeping my legs straight, I cannot touch my toes. My farthest reach is my calves.


Well, did he say that untreated curves usually get more disc herniations than normal spines?
- I felt that he suggested it. Since he mentioned that in a fusion worst that can happen later on in life is that the one disc below the fusion may degenerate, in which case he would just do a laminectomy if that were to happen. However, underneath a major thoracic curvature like mine, may cause MULTIPLE discs to degrade over time.

=======

Thanks Linda for answering, really appreciate your feedback.

I don't currently suffer any disk degeneration at all, it was more of an initiative to get surgery now rather than later since if a laminectomy failed on me i may end up getting a fusion to fix any problems due to a degenerative disc instead but i also know when you are too old, most surgeons turn you down for that.

My pain right now is minimal. it is more of discomfort rather than pain. I just feel i need to stretch with a torso rotational breathing technique i use to help open up my tight concave side every 30 min or so. the only real pain is a pinched nerve feeling in my lower back which I believe may also happen after a fusion if the lumbar discs were spared.




*We have a lot of patients, some of whom have huge curves, who are elderly and who have managed to avoid surgery their entire lives. So, it's not a sure thing that you'll eventually need surgery.

Linda

However, did those patients manage to stabilize their curves or did it get progressively worse through time as well as their pain?

I am seeing another orthopedic surgeon this friday for a 3rd and final opinion. I will let you all know how it goes.

leahdragonfly
03-06-2014, 07:55 AM
Hi jinseeker,

I agree 100% with Linda that there are tons of reasons for you to NOT have surgery now, and really very few compelling reasons TO have surgery now. I do not like the sound of the surgeon you mention at all---he is trying to scare you into having a huge, motion-limiting surgery now, for very dubious reasons. His statement that your activity restrictions will be lifted right away is not consistent with what other well-regarded scoliosis surgeons instruct their patients. It seems like he is massively minimizing the reality and risks of the surgery. I am very concerned hearing the things he has told you. Also, the statement about doing this surgery before you reach the ANCIENT age of ---40--- when the risks get too high is ridiculous! Plus, you are only 29 now, so you have 11 more years to think of it before you get to that elderly age of… 40 that your surgeon warned you about. BTW I have never heard of another surgeon who made 40 the age cutoff! My surgeon does this surgery on people in their 60's and 70's. There are a number of people on this forum who have had surgery in their 60's are are doing great.

Another comment that does not make sense from your surgeon…that if you had the fusion and later got disc degeneration below it you could "just" have a laminectomy. This is far from the truth in many cases, and in fact, I think it might be just as likely to end up with a fusion extension all the way through lumbar and to the pelvis in the case of disc degeneration below a long fusion.

In your situation I think there is no pressing reason and particularly no rush to have this surgery. As Linda pointed out, once it's done there is no going back. You can take your time and wait until/if there is a legitimate reason to have the surgery, then consider it. Please don't let yourself be rushed in to this surgery when there is not a very strong reason to do it. This surgery is not to be taken lightly. If it were me I would do everything possible to avoid or delay surgery for as many years as possible.

Pooka1
03-06-2014, 08:11 AM
Were I jinseeker, I wouldn't have this surgery under the present circumstances unless a surgeon guaranteed I would lose my lumbar if I waited. And that isn't going to happen.

And I wouldn't have it with that guy even if I did. Too many apparently atypical claims if jinseeker is relaying them accurately.

Jinseeker
03-06-2014, 10:28 AM
Don't know if this changes anything, but i believe he meant laminotomy instead of laminectomy.

Anyways, I am seeing a 3rd and final opinion tomorrow with a more conservative surgeon, he didn't recommend surgery for one of his patients i heard that was at 45 degrees, so it should be more interesting what he says about mine.

Thanks.

rohrer01
03-06-2014, 02:53 PM
Jinseeker,

I have the same reservations about this doctor that other's seem to share. I wouldn't go doctor shopping for a conservative doctor, either. I would go to the BEST doctor! These well known doctors do so many of these surgeries that they don't need YOU to pad their wallets. This doctor that you saw sounded more like a salesman than a doctor. These surgeries aren't cheap...cough, cough...they are VERY expensive.

I have a curve magnitude "similar" to yours. I have not had surgery. However, I went from a state of mild to moderate pain having "episodes" of severe pain to being in constant pain. I'm 45. I also have DDD in my CERVICAL discs. Don't be fooled that the lumbar is the only place that can be affected. But I've had dry cervical discs since I was at least 29, maybe younger. My curve pattern is very odd. I also have DDD in L5/S1. But, then again, I've had pain there since I was 29. My heart is misshapen because of my scoliosis even though it is <50o curve. My scoli doctor said that these surgeries actually REDUCE lung capacity. So I wouldn't have surgery for that reason. While your doctor says he would be saving your lumbar from future degeneration, he would actually be taking out TWO of your five lumbar vertebrae. You will be in the hospital for about a week if everything goes smoothly. Don't let that guy lead you to believe that it's a week in the hospital and you're all better with no restrictions. It's a longer time recovering from these surgeries depending on your age, of course.

My DIL had to be fused when she was 16. Her scoliosis was progressive and very badly rotated. She now has lower back pain at the ripe old age of 23. She was fused from T2 to L1, I believe. She also has lower back pain AND neck pain that she didn't have before. Her range of motion is limited. Although mine is just as limited or close to as limited as hers because of the stiffness of my curves. My DIL had INTENSE pain for at least two weeks after surgery. After a month she was able to get off the narcotics, but was still sore and relied on OTC medication. She said it took her about 6 months to feel better. That's a 16 year old! Recovery time does get longer with age, so I wouldn't expect to be back on your feet in a month.

Ultimately, the decision is yours. I may have surgery someday, or I may not. I think the heart thing will be a deciding factor for me OR if my DDD gets worse in my neck. Then, at that, I will be left with a fusion above my already stressed L5/S1 disc. I don't know what would eventually happen there. My surgeon said that if he did surgery on me now, he WILL hurt me more. But he also told me that my fusion would extend from likely C7 to L1 or L2. I can just foresee, if I did that, having to have a revision all the way down because of my already degenerative L5/S1.

An anesthesiologist once told me that a pretty straight spine is NOT a pain free spine.

Ultimately with me at this point, I wish my mother would have consented for me to have the surgery when I was 17. It would all be behind me and perhaps my lower curve (used to be in the teens and now is about 37o) would not have progressed. I have rotation in my lumbar now, even though it looks straight. I went as far as all the pre-surgery testing, speaking to the lab guys to donate my own blood and then no surgery happened. My mom said I was scared and didn't want it. I don't remember it that way AT ALL. I think it was the other way around. During my pre-surgery testing I shared a room with another girl that was just brought back from her surgery. She was screaming and I think it freaked my mom out. I really thought I was going to have surgery at 17!

Sorry I couldn't find my 2012 x-rays. They are a little more telling.

Here is a link to my 2010 x-ray so you can get an idea of what mine looks like:
1568, 1570

I have NO idea why an external link of the same x-ray without the markings is showing up here. I removed it from this post and it's showing up on my preview anyway, grrr. I'll get this system figured out EVENTUALLY. LOL

rohrer01
03-06-2014, 03:40 PM
Jinseeker,

Okay, here is the 2005 x-ray: 1579

Here is the 2012 x-ray:1578

You can see the progression, especially in that lower curve! This is after my spine had been stable for about 20 years! When I was 29, I reached the over 40o mark on the upper curve. As you can see in the 2005 curves that the lower curve looks almost non-existent. It was even smaller when I was a teenager. THAT'S why I kind of wish my mom would have said YES to the surgery when I was 17. I truly believe that my lumbar would have NEVER been involved and it would have been a relatively short fusion compared to what I'm looking at now. This progression that you see here all took place in my 40's. You can see how much less even my hips are. You can also see the rotation despite the fact that the lumbar appears pretty darn straight. That left hip sits way forward and is much higher than it used to be.

But, hey, if you can wait until you are in your 40's before you start having progression or major pain issues, they may have better spine surgery techniques.
Lot's of people have this surgery in their 40's!!! I don't know where that doctor got his assumption that 40 year old patients were too old and had too many complications. Maybe HIS complication rates went way up because he's not as skilled of a surgeon?

There are reasons why you SHOULD go ahead with surgery and there are reasons why you should NOT have surgery. YOU are the only one that can decide for yourself. No one on this forum, no matter how much knowledge, experience, or otherwise lives in YOUR body. Only YOU know how you feel. If you do decide on surgery, PLEASE choose your surgeon wisely. That alone could be the determining factor on whether you ever need a revision or not. I'm not saying every great surgeon's patients never need revisions. But, your chances of a good outcome are much better with a skilled surgeon.

But, you can see from my example that even 30o's isn't protective from progression. That lower curve used to be in the teens and wasn't even counted. I was considered to have one major, upper thoracic curve. Now I have a double major curve (my doctor's words) or what others would consider a double thoracic curve. My lumbar is NOW involved, whereas it didn't used to be.

Take Care!

titaniumed
03-06-2014, 08:53 PM
Jin

I see you are gaining valuable experience in the interview process, learning how to hire, and learning who to trust.....

I knew that my surgeon had what it took from the get go, but still took 2-1/2 years to decide. He never pushed.....and it was ALL my decision. Actually in the end, it was the other way around and he didn’t want to do my surgeries. I was rejected and he made me beg. It was more of a teaching process that my surgeon used on me which was very wise. When your good, there is no rush, and education is part of the process.

In fact, when my 2 cervical herniation’s erupted like a volcano last April, there was an education process about ACDF anterior cervical surgery. He showed me the hardware, explained how everything would be done, but as far as doing it, that was a different story, that had to wait......(since surgery is always a last ditch effort). Linda even reminded me of this at that time. You sometimes forget these things when in major pain.....Herniation’s are extremely painful, I have had 6 of them now. 4 fused, 2 unfused.

Best to go in blind and not say that so and so said this or that.....In other words, do not sway the decision.....Making a surgical decision at age 30 is a really hard decision......If you don’t have pain, and many want to get it done to get it done as if its on a checklist of things to do, that’s not a reason to have surgery.....

I agree with all the posts above and especially Linda’s response which is spot on.

You have plenty of time right now.....your scoliosis icon is a small one on your desktop, its there off to the side and try not to click on it much. If pain hits later on in your life, that icon will become larger and possibly blink red. That’s when you can click on it.....In other words, live your life and try not to worry about it too much, its not worth it.

Funny how when icons blink, they want your credit card number. (smiley face) $29.95

Ed

LindaRacine
03-06-2014, 09:23 PM
Regarding pulmonary issues, you should definitely take those facts into your decision. I think thoracic curves in adults are less likely to progress than lumbar curves. But, let's say they behave like the most aggressive curves, and progress at ~1-1/2 degrees a year. By the time you're 60, you could have an 70 degree thoracic curve. At 80 degrees, some people start becoming symptomatic. On the other hand, the thoracic curve might not progress at all, and you'll never have any pulmonary issue. I'd personally give it at least 15 years to see what will happen. If your thoracic curve has progressed quickly during that time, you can weigh the risks and rewards at that time. Also, scoliosis surgery comes with significant risks, so you can't weigh pulmonary issues against nothing.

--Linda

Jinseeker
03-06-2014, 11:29 PM
Regarding pulmonary issues, you should definitely take those facts into your decision. I think thoracic curves in adults are less likely to progress than lumbar curves. But, let's say they behave like the most aggressive curves, and progress at ~1-1/2 degrees a year. By the time you're 60, you could have an 70 degree thoracic curve. At 80 degrees, some people start becoming symptomatic. On the other hand, the thoracic curve might not progress at all, and you'll never have any pulmonary issue. I'd personally give it at least 15 years to see what will happen. If your thoracic curve has progressed quickly during that time, you can weigh the risks and rewards at that time. Also, scoliosis surgery comes with significant risks, so you can't weigh pulmonary issues against nothing.

--Linda

All I can say is, for the past 10 years so far it hasn't progressed at all. In fact I feel my shoulders are now more even than when I was 19, (mainly due to doing schroth and adapting to a new posture). But then again, as many mentioned problems of progression may occur in the 40s like it did with rohrer.

My question is if those elderly patients doing quite well you are seeing now more or less have had their thoracic curves(40-50deg) remain stable over time. I don't even need to count those over 50 for a comparison. I guess another factor is gender. I am male, but I could be just as susceptible.

Hopefully someone could point out a follow-up research study paper or article on progression of AI scoliosis over 40 deg in adults over time. From many sources I have researched, all say that it does progress anywhere from .3 - 1 degree per year over time. Which makes me want to consider surgery even more.

@ titaniumed: May i know what your curves were back when you were in your 20s or after skeletal maturity?

titaniumed
03-07-2014, 11:52 PM
titaniumed: May i know what your curves were back when you were in your 20s or after skeletal maturity?

I had twin 50 degree curves, a well balanced “S” curve. That was in 1974 Age 15 Discovered after being in a car wreck.

My spine didn’t seem to move much for quite a few years, then in 1993 I had a T58, L66. Age 35 The x-ray was taken after a brutal ski crash. Notice the spondy at T11/T12. It did shift back after a few months....See x-ray below

When I was 41, I was skiing on ESPN and landed especially hard off a jump (On camera, ice landing) then 14 days later, the extreme spasms hit. My first experience with a major pain episode....

When I was 43, I landed hard off a ski jump and that started the downward spiral with sciatica.....January 2002. 4 lumbar herniation’s were discovered after a CT scan. This was the end of the ski jumping. Started Celebrex, my first NSAID use...No other meds were taken.

In October 2007, I had a T70, L70 Age 49. My pain was completely out of control....it was amazing I didn’t have a heart attack from pain.

Funny how with all the physical abuse, you would think my curves would have progressed at alarming rates but they didn’t. It was a different story with my discs....they don’t like abuse. I ruined my discs with all the crashes.

Now, my knees, hips, and my ankles hurt but I’m not a good example for post full fusion since old pro level skiers pay a steep price.

Ed

1580

Pooka1
03-08-2014, 11:01 AM
It was a different story with my discs....they don’t like abuse. I ruined my discs with all the crashes.

I believe that.

I bet the two disc herniations I have had were at the same level in my lumbar. I think riding has trashed that disc and I would be surprised if it doesn't herniate again and again if I keep riding and especially doing sit trot. The next time I will step off for a few months instead of enduring daily pain and crookedness to protect the disc. This ramified to my poor horse losing muscle on his right side under the saddle to the point of it needing extra flocking there and then to occasional uneveness on his right hind. I thought I was compensating by pushing into the pain but apparently I wasn't doing it enough. The guilt is overwhelming despite the fact that he is back to symmetrical now. :-(

rohrer01
03-08-2014, 12:04 PM
Sorry, Jinseeker. I'm not meaning to hijack your thread, but have a question/observation for Ed.

Ed, I'm looking at your pelvic screws and you mentioned hip pain. If you look closely at your left screw, it looks like it might have gone all the way through, by a little bit, your pelvic bone just above your hip socket. The right one ends "just in time". Does your left hip hurt worse than your right? Just curiosity.
They both look solid with no haloing. Your doc did an amazing job. I see you have some scoliosis left, like most do. Do you know what the measurements are? It looks like you got way more than a 50% correction, which is what it seems most people get.
I used to watch ski jumping on ESPN back in the 80's and 90's! Maybe I saw you crash! I saw a few bad ones! OUCH!

LindaRacine
03-08-2014, 12:33 PM
Sorry, Jinseeker. I'm not meaning to hijack your thread, but have a question/observation for Ed.

Ed, I'm looking at your pelvic screws and you mentioned hip pain. If you look closely at your left screw, it looks like it might have gone all the way through, by a little bit, your pelvic bone just above your hip socket. The right one ends "just in time". Does your left hip hurt worse than your right? Just curiosity.
They both look solid with no haloing. Your doc did an amazing job. I see you have some scoliosis left, like most do. Do you know what the measurements are? It looks like you got way more than a 50% correction, which is what it seems most people get.
I used to watch ski jumping on ESPN back in the 80's and 90's! Maybe I saw you crash! I saw a few bad ones! OUCH!

I don't think the pelvic bolts would be a big problem, but one never knows. When pelvic screws or bolts are a problem, as far as I know, it's always at the top of the screw or bolt.

titaniumed
03-10-2014, 02:16 AM
Rohrer, If I rotated a few degrees in either direction and then took an x-ray, those pelvis bolts would adjust accordingly. You have to think in 3 dimensions. He sure did drive them down deep.....maybe he was afraid I would rip them out doing something...well dumb. My hip, knee and ankle pain is a 1 or a 2 level pain at the end of a busy day.....its nothing I cant handle by laying down and sleeping....It will be interesting how much hardware I will end up having in the next 25 years....I don’t know if I will need knees, but I’m not worried about it. I’m more worried about my neck actually. I took my 1st Diclofenac in 9 months yesterday for my neck and it helped quite a bit. Diclofenac is a great NSAID. If you have herniated discs, or scoliosis, having this medication is a good idea....

I never asked about my post curves....it didn’t matter much to me. They look like 30 degree curves...I had no idea how they would come out since Dr Menmuir told me that I could be fused “as is” and that he would make the correction decision only after he got in there. I wasn’t expecting much really, when your in as much pain as I was, all you care about is pain relief. When the nurse came in and showed me my x-rays in the hospital for the first time, that is something I will never forget. It was evidence of an ending battle....

Sharon, I went up into Oregon and visited Susan and Jenee a few years ago. Susan has a horse ranch and she told me that she rode too hard, too long......She has nerves encapsulated in bone and had HUGE curves...and admitted that she waited too long, poor thing. I also think she had an anterior, but after years of abuse, discs simply cant handle the shock. Jenee came out like a teenager, she was done by a female scoli surgeon in Bend. We have identical spines, before and after. She was a T70-L70 like me.

That ESPN event was a Wayne Wong thing and I was invited (as an old timer) even though I wasn’t on the circuit. These guys are about points so when an outsider shows up, they all want to know who the competition is. Johnny Mosley was supposed to show up and was looking forward to meeting with him since I really like what he was about and what he did in SLC in 2002 . The Olympic committee is a sort of stuffy bunch....The ski judges....


I was more of a big mountain skier after I moved west.....this video explains how I was, how I felt, and what happened to my spine and shoulder. Julian Carr talks about his thoughts on the matter. He has a titanium leg and does his 3/4 forward now and lands them all on his back (against doctors orders) I never did over 75 feet.
http://www.youtube.com/watch?v=CiL49xRz9LQ

Now you know why I waited for surgery...I was having too much fun.
Ed

Pooka1
03-10-2014, 05:54 AM
I was more of a big mountain skier after I moved west.....this video explains how I was, how I felt, and what happened to my spine and shoulder. Julian Carr talks about his thoughts on the matter. He has a titanium leg and does his 3/4 forward now and lands them all on his back (against doctors orders) I never did over 75 feet.
http://www.youtube.com/watch?v=CiL49xRz9LQ

Now you know why I waited for surgery...I was having too much fun.
Ed

That looks off the hook and very punishing. I had no idea that is a discipline within skiing. I am sure it is a hoot. :-)

leahdragonfly
03-10-2014, 07:57 AM
I was more of a big mountain skier after I moved west.....this video explains how I was, how I felt, and what happened to my spine and shoulder. Julian Carr talks about his thoughts on the matter. He has a titanium leg and does his 3/4 forward now and lands them all on his back (against doctors orders) I never did over 75 feet.
http://www.youtube.com/watch?v=CiL49xRz9LQ

Now you know why I waited for surgery...I was having too much fun.
Ed



OMG, Ed!!!!!!! That video is too crazy! That makes snowboard-cross and ski-cross look like child's play! I was glad to see Julian has friends with him when he's doing those huge jumps, to make sure he is ok.

How did he end up with a titanium leg? Does he have it in that video? Absolutely incredible.

rohrer01
03-10-2014, 03:21 PM
I could see IF the powder is soft AND there aren't any rocks lurking under the surface how that could be awesome to do. It seems a huge risk of causing an avalanche, though! However, with my smallish curves, I about came unglued with pain just jumping on a trampoline about 10 years ago. For some reason my curve is more painful than most in my category of severeness. I think it's the odd place where my curve is that makes it more painful. I haven't met a surgeon yet that has seen a curve like mine!

About the neck... mine is a mess! I have DDD in every disc and a bone spur at C5 growing toward my spinal cord. Plus, there are a couple of places I can see on my MRI that show the discs bulging toward the spinal cord. There is an EVENTUALITY there that I don't even want to think about...ugh... My shoulder surgeon wasn't convinced at all that at least some of the pain in my right arm wasn't coming from my neck. But after surgery, there is only one place left that causes me occasional pain. My left arm is a whole different ballgame. I've had radiculopathy in that arm since I was 16. I was also diagnosed with "arthritic pain" at 16. So the problems there are pretty much constant with some degree of pain.

I'll ask my doctor about diclofenac next time I go. How rough is it on the gut and the heart? That's where I run into problems with NSAIDs.

Sorry, Jinseeker, if we seem to be stealing your thread. But, you know cervical DDD has everything to do WITH your thread title. I used to be able to crack my neck constantly for the 10 seconds of relief that it give you, HA! Now, I can't even get a little 'pop' out of it, though I feel like I need to majorly CRUNCH it. I'm quite rapidly losing range of motion in my neck. Well, maybe not rapidly in a doctorly sense. But, hey, when you hit 40+ years, time FLIES by so quickly!

titaniumed
03-10-2014, 10:51 PM
It all started at Sterling Forest, NY around 1964 when I was 6. I was already an expert, (he he) and jumping around 20 feet with my dad coaching....now, 50 years later I’m in pretty good shape except for all the joints in my body. (minus the fused area) at least I don’t have to worry about that area anymore.

Julian wiped his leg out just like I wiped out my shoulder. When my shoulder surgeon x-rayed it, my humeral head was shattered like broken glass...I hit so hard it almost knocked me out....If you ski extreme terrain or go in the back country, you never go alone. If you lose your partner, you have to backtrack. Those are the rules. We spot one another. I have also been in 3 avalanches....One took me for a 1000 foot ride in 3 seconds, the snow was up to my armpits, and flowed like ocean water....

I have come close to death quite a few times on skis....but the rush was worth it, I wouldn’t have changed a thing. I do miss it, but I guess these things have to come to an end. So, my scoli surgeries saved my life in that regard since skiers die out here ....Surgery at a younger age would have put a severe damper on my extreme skiing lifestyle.

I cant say if extreme shocks to discs cause degeneration even though it seems likely. I just wanted you guys to know exactly what kinds of physical abuse a spine can handle and what happens after decades of high speed tumbles and crashes. My neck was roasted in my hospital reports 6 years ago. My surgeon told me that I was a 10 scale situation.....he never mentioned my neck, I mean, how much bad news can someone take? My whole spine wiped out? Dr Menmuir did an incredible job on me.

Having scoliosis surgery at a younger age limits the possibilities. You never know if you want to take up something like this.....people change. Yes, many of us can do all sorts of things with fused spines, but there are times I wished I could be “unfused” just for a day or 2.....and they would be deep storm days.

Now this video is extreme....these guys are really pushing the limits these days. The only difference is James Bond got the girl. LOL
http://www.youtube.com/watch?v=SwbP9WLX3fY&list=TLRSOXXhcz-yxWUAUu0HyU6ir_P_qI-4Zj

Ed

jrnyc
03-10-2014, 11:56 PM
Jinseeker...excuse me, but i think it is beyond the beyond to consider
fusion surgery to try to avoid something that MAY happen in the future...
i agree with Linda Racine 110%

i found Declofenac to be a great NSAID...until i had an allergic
reaction to it...that was the 3rd NSAID i reacted to....and i
actually should never have been allowed on it....

i handled scoliosis really well until i herniated disc in my lumbar
spine...it has been downhill ever since...
(NO PUN INTENDED, ED)
it was as if it was the final insult to my back...i swear it feels like it has been collapsing in small ways ever since the disc herniation...

jess...and Sparky

susancook
03-11-2014, 01:42 AM
Ed, loved reading about your ill spent youth. Sounds like you pushed the limits. If we gave you 2 days non-fused, we might not see you again! Susan

Jinseeker
03-11-2014, 04:36 AM
I'd just like to update you all of my 3rd and final visit to a new orthopedic surgeon. After reviewing my x-rays, he found there was no sign of progression in the last 10 years, only a progression of discomfort really. His cut-off for surgery was 50 degrees, he said for other surgeons the cut-off was 40. My main curve measured at 47 degrees when taken from T5-L2, thus he recommended for me to continue to just monitor the curve and see if it progresses and if I experience pain I can no longer handle before going through with surgery.

However, when I got home and measured from T5-L1 instead of L2 which is where I believe it should be measured because L1 seems to be the most trajected or wedged shaped vertebrae,
it measured at 51 degrees. Then I emailed him about it, and now he is leaving the decision to me whether I want to get it done or not.

Although I know I have a very tough decision to make, your truthful inisight will really help me decide which is why I have a few questions for those already fully healed and post op. I do agree with all of you that I shouldn't have surgery for a health threat that may never even happen. But my DECISION would more or less be if surgery can GIVE ME A BETTER QUALITY OF LIFE now and in the future than the difficulties of what I am already going through right now.

I am at a point where I wobble when I walk, have manageable pain but is also pretty inconvenient, and have insecurity-inadequacy issues because of how I manage it. Let me explain. I have to do schroth exercises daily, this includes rotational angular breathing(RAB) to try and derotate the ribs of your spine constantly. When my back starts to ache I feel I have to sit or stand at a very awkward looking posture countering the right thoracic curve to free up my concavities and relieve pressure. That is enough to draw awkward stares from others that I also have to deal with. You can just imagine how inadequate I would feel and hesitant I am when being in any social situation. If I sit for a long time working at the office, I either wear a rib belt or use a traction strap hooked around the arm rest of the left side of my chair tied around my rib hump to push it forwards(to address the torso rotation) and leftwards to align it better with my pelvis. This I feel works well for me and I can sit all day for 8 hrs and not feel any pain. Let me point out I also
don't have any loss of flexibility and function, have no restrictions to any activities and I can lift heavy weights at the gym, run a mile, do housework. I actually get more strains and aches in my back from inactivity, rather than activity. However, an inactive lifestyle is what I choose since that is what requires of me in my job. ( I am a digital sculptor)

I'd like to weight my current situation with those already post op and fully healed, like about a year after their operation. Since I know most folks in this forum have had bad experiences with surgery, I'd only like to know insight from those or on behalf of those that that WERE SATISFIED WITH THEIR SURGERIES and considered it a success.

Hope you don't mind me being too specific, but I am quite the analytical type and like to weight everything down to the last detail.

Here are my questions:

1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

3rd and most importantly, How long can you sit on a chair or stand up doing office work with a fused spine without any problems of discomfort or aching in your back? This doesn't necessarily have to be pain.

Thank you all for taking the time.

rohrer01
03-11-2014, 10:34 AM
Jinseeker,
You know I haven't had surgery. So before you get upset, I have a few insights for you.
You do a LOT to maintain your "pain free" status. I didn't realize that you were doing all of those very visible things.
Emotional health is just as important as physical health. If you are embarrassed about social situations and avoid them, that can't be good for you.

My daughter-in-law, as you know, HAS had surgery and I have asked her a lot of questions about it, since I haven't had surgery. So here are HER experiences, and she is very happy she had the surgery. But she had a very aggressive, progressive, and rotational scoliosis. She was fused when she reached 48*.

1. Having the metal rods in her back: She always used to crack her back to get some temporary relief from discomfort. She still gets that sensation but can not crack her back, obviously.
2. The metal rods are most bothersome when she allows her back to get too cold. We live in a very cold climate and when she dresses appropriately, has no problem.
3. The surgeon, for some reason, left about a 1-1/2 to 2" segment of rod unattached to anything. When she bends or just plain does activities of daily life, this piece of rod digs into her erector spinae muscle and it swells and turns red. (fault of the surgeon)
4. She does just about anything she wants to. She worked in construction, sheet rocking, painting, and roofing for over a year. So her activities are not limited.
5. She does have premature lower back pain, but hasn't taken any measures to take it easy.
6. She suffers from chronic pain and muscle spasms (primarily in her neck), the pain is in her neck, around her shoulder blades and lower back. She takes a muscle relaxant and a low dose of tramadol.
7. She would probably be in WORSE shape today if she hadn't had her surgery.

With all that said, I haven't had surgery and I suffer from:
1. Not being able to crack my back when I have the sensation to do so because my curves have stiffened. I can't even crack my neck!
2. The cold causes me to go into terrible muscle spasms.
3. I have very strict lifting restrictions and my physician has declared me "disabled" even though I can't collect any type of disability. I'm NOT allowed to work.
4. I have troubles doing the activities of daily living. Getting dressed is sometimes difficult because of the lower back pain. Before my upper back treatments, it was painful at times to put shirts on. I do have other things wrong that make it hard for me to do house work (heart condition). But my heart is deformed from the scoliosis. I have no way of knowing if this is a contributing factor or not.
5. I suffer from chronic back pain and have to take heavy narcotics and a couple of very strong muscle relaxants.

So there you have it. I do have the Cervical Dystonia. I have a hunch that it might come with the territory, as my DIL has the same large left trapezius that I "had" before my treatments. It is too sore to even touch, thus the muscle relaxant. She doesn't have a heart condition. That is MY biggest limiting factor at the moment. Lower back pain is my second most limiting factor. My scoliosis is in the exact same range as yours, but is unique. So my "natural progression" of symptoms may not relate to all.

Finally, PLEASE do NOT limit yourself to success stories only. The truth of the matter is that every surgery isn't a success story. If you hear only the positives and not the negatives, are you REALLY making an INFORMED decision?

EDIT: My lower back pain is my 3rd most limiting factor. My neck, shoulder girdle and arm pain are my 2nd most limiting factor. I have symptoms there that you would NEVER have because of my curve location.

rohrer01
03-11-2014, 10:51 AM
Oh, and I can't run. The jarring impact on my spine makes it hurt too badly. My DIL CAN run, though I encourage her NOT to put more stress on her lower spine than she needs to... for the reason of Ed's post!

Pooka1
03-11-2014, 11:08 AM
Here are my questions:

1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

3rd and most importantly, How long can you sit on a chair or stand up doing office work with a fused spine without any problems of discomfort or aching in your back? This doesn't necessarily have to be pain.

Thank you all for taking the time.

I suggest you focus on younger people who are only fused down to L2. That will let out many if not most folks here. Your perception that many people have had difficulties is probably swayed by the sheer number of lumbar fusions here which seem very tough.

At 29, I think you might group with adolescents in terms of recovery from surgery. My two girls had T fusions very similar to what you are considering. I have asked them these types of questions and will put down what I know... sorry this isn't first hand. I can follow up with any questions you have with them if you like.

1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

They rarely have pain. If they sit funny or slouch they will be sore at the top of the fusion the next day but it is infrequent. They have mentioned it 2-3 times and they are both fused about 4-6 years. So it's rare. They have no issue with their lumbar in any regard. Of course what would their pain levels be like over time had they not been fused? One of them had some pain before surgery probably due to a fast-moving curve but that has completely disappeared within a few months post op.

2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

They claim they can't feel the rods. They claim being fused feels no different than before. I at first I assumed it was because they forgot what it was like to not be fused but I have come to learn that they probably always had a lower ROM from side to side through the thorax due to their scoliosis. So they may really mean it when they say their T fusions changed nothing. They have full ROM front to back of course because you don't bend too much through the thorax.

3rd and most importantly, How long can you sit on a chair or stand up doing office work with a fused spine without any problems of discomfort or aching in your back? This doesn't necessarily have to be pain.

They do anything they like. I don't know what if anything they might be doing differently now in terms of standing compared to before. I can ask them if standing for long periods is a problem but I think that is usually linked with lumbar issues so I doubt they will say they can't stand. They have only rarely complained of pain, ache, etc. as I mentioned previously. Never an issue sitting... they only have T fusions.

Please let me know if you have other questions for my Frick and Frack. :-)

LindaRacine
03-11-2014, 11:19 AM
However, when I got home and measured from T5-L1 instead of L2 which is where I believe it should be measured because L1 seems to be the most trajected or wedged shaped vertebrae,
it measured at 51 degrees. Then I emailed him about it, and now he is leaving the decision to me whether I want to get it done or not.

Hi Jinseeker...

If I didn't know better, I might actually thinking you were joking. I don't know who you saw, but I hope it was someone who did 4 years of medical school, 4-5 years of residency, at least 1 year of fellowship, and however many years he or she has been out of training. How can you possibly think you know how to measure a scoliosis xray better than them? Sorry for being so blunt.

That aside, I personally think curve magnitude should have little to nothing to do with the surgery decision in adults. As I've said previously, the decision is totally up to you. I'm sure you'll find that many surgeons would agree to do surgery on you, even if they thought it wasn't a great decision. I urge you to dig deep to understand why you seem to be leaning toward surgery. Surgery is rarely the be all and end all of scoliosis.

--Linda

Jinseeker
03-11-2014, 12:20 PM
Hi Jinseeker...

If I didn't know better, I might actually thinking you were joking. I don't know who you saw, but I hope it was someone who did 4 years of medical school, 4-5 years of residency, at least 1 year of fellowship, and however many years he or she has been out of training. How can you possibly think you know how to measure a scoliosis xray better than them? Sorry for being so blunt.

That aside, I personally think curve magnitude should have little to nothing to do with the surgery decision in adults. As I've said previously, the decision is totally up to you. I'm sure you'll find that many surgeons would agree to do surgery on you, even if they thought it wasn't a great decision. I urge you to dig deep to understand why you seem to be leaning toward surgery. Surgery is rarely the be all and end all of scoliosis.

--Linda

Thanks Linda, but I may have left a few details out of that one. Before I measured it myself, I remembered my consult with my chiropractor a long time ago on my first xray back in 2004, he measured it at 51 degrees from T5 to L1. So I remeasured the newest xray I've taken a week ago from that range, and it measured just the same. I have learned to measure cobb angles through reliable info on the internet.

I understand surgery isn't the be all end all, and I could just be overreacting dealing with my current situation, which is why I am conducting a questionnaire here in the forums.

@ Pooka: That sounds great your daughters are doing well. But how old are they? I didn't get any pain until my mid 20s. I agree with you on those that have had lumbar fusions. They do seem to be less satisfied with their outcomes compared to those who have had thoracic fusions only. Just look at youtube, I have seen about 7/10 lumbar fusion post op recovery videos that have ended in dissapointment even if they only got short fusions like L4-L5 or L5-S1.

@rohrer: Thanks for the info as well, your DIL seems to be doing good or around the same level at least as I am right now. Yeah I also like to crack my back a lot of times, but mine is a little more complicated, since I do it together with rotational breathing and use my arms or elbows as levers to help derotate the spine as well as crack the stiff parts of the back.

Let's keep the testimonials coming....

rohrer01
03-11-2014, 12:29 PM
Hi Jinseeker...

If I didn't know better, I might actually thinking you were joking. I don't know who you saw, but I hope it was someone who did 4 years of medical school, 4-5 years of residency, at least 1 year of fellowship, and however many years he or she has been out of training. How can you possibly think you know how to measure a scoliosis xray better than them? Sorry for being so blunt.

That aside, I personally think curve magnitude should have little to nothing to do with the surgery decision in adults. As I've said previously, the decision is totally up to you. I'm sure you'll find that many surgeons would agree to do surgery on you, even if they thought it wasn't a great decision. I urge you to dig deep to understand why you seem to be leaning toward surgery. Surgery is rarely the be all and end all of scoliosis.

--Linda

But, I think that's what MOST people are hoping. I think my DIL may eventually have to have those rods removed because of the muscle irritation. It seems as we age and things start to malfunction, our "little" problems get much bigger whether we've been fused or not.

The doctor for Pooka1's daughters called it "one stop shopping". So I think he at least feels that they are done. IF they need further back surgery, according to what he said, it wouldn't be anything any other person in the population might have problems with. I'm not quite sure I agree with this. But who am I to argue with a doctor?

Pooka1
03-11-2014, 02:03 PM
@ Pooka: That sounds great your daughters are doing well. But how old are they? I didn't get any pain until my mid 20s.

They are 19 now and were fused at 14 and 15. Only Frick had any pain pre-op.... Frack did not.

Pooka1
03-11-2014, 02:07 PM
The doctor for Pooka1's daughters called it "one stop shopping". So I think he at least feels that they are done. IF they need further back surgery, according to what he said, it wouldn't be anything any other person in the population might have problems with. I'm not quite sure I agree with this. But who am I to argue with a doctor?

Boachie agrees with our surgeon. If you can align the lumbar and end the fusion high enough, these can be one-stop shopping. Frick's lumbar is completely straight on the last radiograph because her T curve was hyper-corrected ("no residual scoliosis") I assume. Frack has a residual lumbar curve in the mid 20s but the long term (two decades) on her type of case is that they are stable at least that long. I remain hopeful she is one-stop also on that basis.

rohrer01
03-11-2014, 03:13 PM
I would be hopeful, too. But look at my 2005 x-rays compared to my 2012 x-rays. It went from 28o to 37/38o in five years. It's those darn 40's that get us. I mean age. :-( That curve used to be in the TEENS and it's all thoracic. Well it's down to L2 now. It WAS all thoracic.

LindaRacine
03-11-2014, 03:59 PM
None of us should be comparing surgery in adults to surgery in kids. They're very different.

Jinseeker, I think you've already made up your mind, so I won't continue to try to make you see the error of your ways. I hope you have no complications and a good outcome.

--Linda

3sisters
03-11-2014, 05:37 PM
Jinseeker, I am in a similarly curved situation as you, and have not had fusion surgery. I would like you to consider not rushing into making this decision now. You said you are stable; you most likely will be for a while. If the quality of life you are currently maintaining is stressful- consider taking a break from the exercises and postural controls. If you are stable anyway, maybe you are creating undue stress that you just don't need right now. Maybe try stopping thinking about the scoli, and just exercise for the joy of running, lifting, or just relaxing. Sure you have rotation, but you have had that for years. You are probably the only one thinking about it; most of my friends never noticed my scoli at about 50 over 36.

If you can get over this urgent decision-making feeling, you might be able to step back and realize it is NOT an urgent situation. If it ever is, you can rethink your options. You are lucky that surgical techniques will surely get better and better, if ever required for you. Stable is good. I hope you can take a mental break for a while; find a new focus, hobby, exercise, or interest to occupy your worries about your current stable situation.

jrnyc
03-11-2014, 06:14 PM
Jinseeker...i didn't express myself well with my comment about what may happen in the future...i do understand when fusion surgery is recommended because it is highly likely that a scoli patient's curve(s) are progressing and doing the surgery at a younger age (referring to adults here) often means better results.

but i do not understand doing surgery if worried about a possible future herniated disc...personally, i believe the older one gets, the more likely a herniated disc will happen...to anyone, not just scoliosis patients... i think herniated discs are more likely to happen to people who have scoliosis...i think scoli weakens the spine in general...but that is just a personal opinion...not meant to be scientific or to be based on any research...just my own observations...

and rohr...arguing with a doctor...? yes, absolutely...learned that the hard way....with Lyme disease....back in the day when some doctors said "...Lyme shouldn't hurt that much..." and also learned it the hard way when my mother was sick with cancer...some doctors seem to think they are above being questioned....
they get that "we are like gods" complex....

jess

rohrer01
03-11-2014, 06:42 PM
Jess,
I'm glad you are back! LOL
You were sorely missed here!

Woofs!

Pooka1
03-11-2014, 07:27 PM
None of us should be comparing surgery in adults to surgery in kids. They're very different.

Yes I agree but where do you draw the line? Isn't a 20 or 25 year old expected to recovery similarly to a teenager? Or a 29 year old in good shape? Maybe not. I don't know. I just don't think things change abruptly in terms of recovery when one goes from adolescent to young adult.

As for jinseeker, nobody walks in his shoes, certainly not me. I hear in his posts some valid reasons he wants some relief from the PT and aches and appearance issues and thinking about scoliosis. One of the biggest reliefs was not having to think about scoliosis after the second kid was fused. It's been so blissful since then in our family without that hanging over us.

But it is hard to hear him wanting surgery when he has no demonstrated progression for 10 years and is slightly subsurgical now. I'm actually surprised he found someone willing to fuse an adult with no demonstrated progression in 10 years but what do I know? The wild card is what will happen to the lumbar in either case. You never want to snatch defeat out of the jaws of likely victory. That's what I would be considering were it me but there are no real answers there unfortunately.

It's a very tough situation he is in. The only good thing is there is no rush like with my kids.

Good luck, jinseeker.

rohrer01
03-11-2014, 08:11 PM
Yes I agree but where do you draw the line? Isn't a 20 or 25 year old expected to recovery similarly to a teenager? Or a 29 year old in good shape? Maybe not. I don't know. I just don't think things change abruptly in terms of recovery when one goes from adolescent to young adult.

As for jinseeker, nobody walks in his shoes, certainly not me. I hear in his posts some valid reasons he wants some relief from the PT and aches and appearance issues and thinking about scoliosis. One of the biggest reliefs was not having to think about scoliosis after the second kid was fused. It's been so blissful since then in our family without that hanging over us.

But it is hard to hear him wanting surgery when he has no demonstrated progression for 10 years and is slightly subsurgical now. I'm actually surprised he found someone willing to fuse an adult with no demonstrated progression in 10 years but what do I know? The wild card is what will happen to the lumbar in either case. You never want to snatch defeat out of the jaws of likely victory. That's what I would be considering were it me but there are no real answers there unfortunately.

It's a very tough situation he is in. The only good thing is there is no rush like with my kids.

Good luck, jinseeker.

I think there's more going on psychologically, here. Men have just as hard of a time, maybe harder than women when it comes to body image. He's stated that he walks different and has to strap himself down to his chair all day. Having to make large awkward movements in public to relieve pain can be embarrassing. I know because I've done it and had many weird looks from people. So I think there's a psychological component to this that may be being overlooked here.

Also, maybe he's not progressed in 10 years BECAUSE of all of the PT he has to do every day. Like Pooka1 said, maybe he's tired of living and breathing scoliosis. It sounds like he goes through a LOT to keep his pain manageable. I was about his age when my pain levels started to deteriorate. It's been downhill ever since. My PCP wanted me to have surgery and sent me to a specialist at Twin Cities. The doc there was more conservative than the ones I had at Phoenix Children's Hospital. They told me that WHEN my curve reached 40o that I NEEDED to have the surgery. Maybe it was because of the location of my curve, I don't know. Maybe their standards were different there. When I went to Twin Cities my curve measured 41o. The surgeon said he wouldn't operate until it was 50o. He had never seen a curve like that before, either. He could care less that I was in so much agony in my neck and head that I was literally crying. He told me to take some Tylenol. I had over a four hour drive home! Thankfully I had a friend with me. It was really devastating, and has been my whole life. Scoliosis just doesn't leave your mind when it hurts you every single day of your life and NO ONE will do anything to help.

I certainly wouldn't want to have to strap myself to a chair and exercise every lunch break for life. He's at his prime. Maybe for him it's time to move on. So, Jinseeker, if you go for the surgery my ONLY suggestion for you is to PLEASE make sure you have a qualified SCOLIOSIS surgeon who devotes most of his patient care to treating scoliosis. Look at his record and ask questions. Find out his reputation. The skill of your surgeon will have much to do with the outcome of your surgery. You have two yeses, so far that I've heard. Leaving it up to you makes it hard. But the doctor wouldn't be willing to do it if he thought it wouldn't help. Like I said before, make sure he's well known. That way you KNOW he doesn't need YOUR back to make HIS house payment.

MY surgeon told me he would HURT me! Honestly, if I end up needing surgery, I don't know what I'll do. No one has any or very limited experience with a left, high and tight curve like mine.

Best wishes to you. Please let us know what you decide. Again, please don't limit yourself to only "positive" outcomes. You NEED to know what can really happen and be prepared for any complications should they arise. Age is still on your side.

((((HUGS))))
Rohrer01

titaniumed
03-12-2014, 01:32 AM
Jin, I can see that you are struggling with maintaining.....and agree with Emily’s post about taking a breather if you can. Sometimes we just need a break.

Where are you located? You know there are local support groups and that’s a great thing to participate in. Linda used to have the sites and numbers on her website but I’m having trouble finding it now....??? She also had the “Do I need surgery” quiz which was quite helpful, even though I failed that one miserably....
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1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

Frequent pain? No. But many of us have the bear traps, the tightening, gripping feeling in our thoracic, usually when winter storms approach. Living in cold climates after fusion surgery is harder to do. There are many threads about this here if you search. Its weather related discomfort. I don’t have muscle spasms but some posties do. Fatigue took me 2 years to get over, and is still there. Hard to say since I’m getting older now. I have no nerve impingement, that depends on your surgeon and the job he does and the luck of the cards. You can have the best surgeon do the best job he can, and still have complications that are beyond control since the human body is extremely complex. I had an ALIF on all my lumbar levels, it came out great, but some are not as fortunate and there are no guarantees as far as pain relief is concerned. I really can’t comment about unfused segments above or below as I’m not a good candidate for that question at all. (smiley face)
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2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

I don’t feel the rods or the screws at all. You do feel extremely stiff especially in the beginning after surgery, many of us adapt to the change that we are forced to adjust to.
If you look in my signature, you will see a mobility thread with photos of me in various positions. This movement I have is due to other soft tissues, and shows that we don’t become complete “Tin men” after surgery. Movement after you are done with recovery has certain limits and you will test these limits and know exactly how you can move.
I can run, but its not the same being fused to the pelvis. I run on the balls of my feet to absorb shock which I have lost. Its not a comfortable thing. I can run from a crocodile if I had to, but have never had to......(I posted a photo of this at some point here) I can do a very fast sprint, but cant run more than a few hundred feet. I can hike 15 miles through tough terrain with a backpack.

Movement is essential with scoliosis fused or not fused. I get up and walk away from my desk every 15 minutes.

I can explain many feelings and questions on the phone way easier than I can type....It would love to answer any questions in detail if you like, I have done this for others here in the past and I’m there if you want to talk....

If you do decide to have surgery and you set a date, its hard to cancel if you get cold feet. I know since I did this once. Being unsure is ok....being scared and honest is ok.

You also need to have ALL your ducks in a row. Finances, insurance co-pays,training inner circle, support team, back up plans, work plans, being prepared for complications, future surgeries, pain expectations, realistic recovery times, being prepared for weaning off opoids, dealing with constipation, sleeping matters, working from home, working part time, what will your boss think?, what will your customers think? Will I need disability? Will I recover alone? What will my friends think? What will my wife think? What will I end up thinking? Can I do this? Future goals? Can I drive? Who will drive me? Who will get groceries? Who will food shop? There are many questions to answer....

Having a positive attitude is necessary. Being totally committed is necessary.....and its just like jumping off cliffs on skis, there is no turning back.

Keep asking questions...Your doing a great job!

Ed

Jinseeker
03-12-2014, 02:32 AM
Thanks for all the responses so far. To clear things up, I only had 1 YES so far, 1 was NO and the most recent one was an "up to me". The exercises I have to do frequently throughout the day are not lengthy exercises, but more like momentary 2 minute stretching and rotational breathing to ease the tight unstable feeling, keep my spine flexible and to release those muscles that are being overworked from my scoliosis.

@ Linda: I'm actually not decided at all. I am more in the process of gaining as much knowledge as I can from others. I understand surgery is a BIG step and so I am doing all the research I can to see if it is worth it right now or not.

@titaniumed:
I am in the process of immigrating to Canada, but most likely will have it done in Singapore since it is a lot cheaper there and I heard their surgeons are great. If anyone knows a good reputable Surgeon there, please link him/her to me.

"Movement is essential with scoliosis fused or not fused. I get up and walk away from my desk every 15 minutes. "

I understand that, but I'd rather know specifically what sitting long hours feels like on the fused spine. Can you sit for long hours without any pain or discomfort? Let's say like for 2 or more hours without getting up?


Hopefully other members post op in the forum can also answer my questions.
I'd like to list them out here again,

1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

3rd and most importantly, How long can you sit on a chair or stand up doing office work with a fused spine without any problems of discomfort or aching in your back? This doesn't necessarily have to be pain.

LindaRacine
03-12-2014, 03:53 PM
Where are you located? You know there are local support groups and that’s a great thing to participate in. Linda used to have the sites and numbers on her website but I’m having trouble finding it now....??? She also had the “Do I need surgery” quiz which was quite helpful, even though I failed that one miserably....
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Ed... I took my site down, as it was too hard to keep it updated, and search algorithms have made it easy for people to find a lot of the information on their own. I'll work on putting some of the most utilized pages up on my Comcast website. Unfortunately, I think many of the support groups have disbanded. The Scoliosis Association runs most of the support groups, but I can't get a response from their website (http://www.scoliosis-assoc.org/).

--Linda

titaniumed
03-12-2014, 11:23 PM
Linda,

I see....

What do you think about throwing up the “Do I need surgery” quiz here on its own thread?

It’s a good way to gage where one stands on making a decision.....

I took it a few times and on different days and tried to score low (not needing surgery) and then averaged the test scores.

I’m sure many did the same thing.

Ed

Irina
03-12-2014, 11:56 PM
Thanks for all the responses so far. To clear things up, I only had 1 YES so far, 1 was NO and the most recent one was an "up to me". The exercises I have to do frequently throughout the day are not lengthy exercises, but more like momentary 2 minute stretching and rotational breathing to ease the tight unstable feeling, keep my spine flexible and to release those muscles that are being overworked from my scoliosis.

@ Linda: I'm actually not decided at all. I am more in the process of gaining as much knowledge as I can from others. I understand surgery is a BIG step and so I am doing all the research I can to see if it is worth it right now or not.

@titaniumed:
I am in the process of immigrating to Canada, but most likely will have it done in Singapore since it is a lot cheaper there and I heard their surgeons are great. If anyone knows a good reputable Surgeon there, please link him/her to me.

"Movement is essential with scoliosis fused or not fused. I get up and walk away from my desk every 15 minutes. "

I understand that, but I'd rather know specifically what sitting long hours feels like on the fused spine. Can you sit for long hours without any pain or discomfort? Let's say like for 2 or more hours without getting up?


Hopefully other members post op in the forum can also answer my questions.
I'd like to list them out here again,

1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

3rd and most importantly, How long can you sit on a chair or stand up doing office work with a fused spine without any problems of discomfort or aching in your back? This doesn't necessarily have to be pain.
I am one year out and can sit for as long as I want. I am an accountant and work 9 - 10 hours days right now. I don't have to get up often - can easily sit for 2-3 hours in a row. I do have a sit-stand desk. I raise it up a couple times a day and work standing up for some time. I also take 30 min fast walks at lunch every day. Sitting was not easy early on though. My tale bone and neck used to hurt probably until 7-8 months out. I went back to work at 8 months - I could afford it financially and I wanted to make sure I was completely recovered... maybe not completely, but almost recovered.

susancook
03-13-2014, 12:51 AM
Thanks for all the responses so far. To clear things up, I only had 1 YES so far, 1 was NO and the most recent one was an "up to me". The exercises I have to do frequently throughout the day are not lengthy exercises, but more like momentary 2 minute stretching and rotational breathing to ease the tight unstable feeling, keep my spine flexible and to release those muscles that are being overworked from my scoliosis.

@ Linda: I'm actually not decided at all. I am more in the process of gaining as much knowledge as I can from others. I understand surgery is a BIG step and so I am doing all the research I can to see if it is worth it right now or not.

@titaniumed:
I am in the process of immigrating to Canada, but most likely will have it done in Singapore since it is a lot cheaper there and I heard their surgeons are great. If anyone knows a good reputable Surgeon there, please link him/her to me.

"Movement is essential with scoliosis fused or not fused. I get up and walk away from my desk every 15 minutes. "

I understand that, but I'd rather know specifically what sitting long hours feels like on the fused spine. Can you sit for long hours without any pain or discomfort? Let's say like for 2 or more hours without getting up?


Hopefully other members post op in the forum can also answer my questions.
I'd like to list them out here again,

1) Do you still have frequent pain, discomfort or loss of function now after the surgery? how about muscles spams/fatigue, nerve irritation around area of fusion, or nerve impingement in the lower back or unfused segments of your spine?

2) How does it feel like having a metal rod at the back of your spine? Is it an inconvenience everyday when having to do activities, like does it hurt when you try to move a certain way you shouldn't? Also how does it feel to have the unfused segments of your spine do all of the work in the motion of your spine, do you have to exert more of an effort than before you were fused when doing strenuous activities(such as running, housework) and do get tired more easily than other people with straight spines?

3rd and most importantly, How long can you sit on a chair or stand up doing office work with a fused spine without any problems of discomfort or aching in your back? This doesn't necessarily have to be pain.

Hi there, I am almost one year postop T3 to Sacrum fusion with lots of repairs to degenerative discs and stenotic vertebrae along the way. I have occasional slight discomfort from regrowing nerves. My R leg is a little bit weaker than my L, but I have learned to put on my R sock by putting my leg up on a chair. Not a problem, just takes a few seconds more. I have a small challenge reaching for bowel movement cleansing, probably because God gifted me with short arms and a long torso. Occasionally, the muscles in my upper back hurt a little after exercise. Complain? Hardly! Before surgery I had to sit often or lay down on the floor because of pain. I could chop and then stir fry dinner, and then I would lay down with an ice pack on my kyphosis in severe pain while my husband ate dinner. I ate about 30 minutes later when I reheated it. My life is so-o-o-o-o much better! I can stand in lines.

Do I feel a metal rod? Funny thing, I was sitting back on a hard backed chair recently and I thought, "what's that hard irregular surface poking in my back?" I turned around and realized that it was my hardware that was bumping against the hard back of the chair. Is that a problem? Hardly. Before surgery, I could not sit for long unless it was the perfect chair, and those were few. I squirmed a lot and usually curled my legs under me. I could not eat in restaurants with wooded booths.

A month ago, I stretched my arm over my head and felt the thoracic area that was instrumented. I was really surprise that it was very hard!

Does it hurt to move certain ways? No, because it is second nature to just not bend at he waist and twist. It does hurt a little when I forget and twist sometimes when I am driving at exits. I do not run, that activity was on my list of activities never to do. I can sit and stand for about 10 times longer than I could before surgery. I generally chose padded chairs, but I do not have a problem in general with most chairs.

I hired a personal trainer and we exercised for an hour today, so tonight I am a little bit sore, but I am progressing every month. Do I do all of the same things as before surgery, pretty much, but now I have endurance and can stand in lines, don't have to go home early from parties because my back was hurting, do not need to lay on the floor when my back hurt so much like before surgery, do not carry an ice bag with me everywhere I go like I did before surgery, and just do things a little bit differently. I really do not even give it too much thought most days where before surgery, by afternoon, my pain was the center of my life and greatly limited what I could do.

Spinal fusion surgery gave me my life back. I tell people that, if there's a lightening storm, stay away from me because with all of my titanium, I am a lightening bolt magnet! Haha!

Your questions and assumptions lead me to believe that you think that for most people that surgery increased problems or limitations. It was just the opposite for me. I was becoming progressively more and more limited in life before surgery. Recovery is not fast but I am so happy that I had surgery.

Susan

Jinseeker
03-13-2014, 03:08 AM
@ Irina: what part of your spine were fused?

Sounds like both of your surgeries went well.

LindaRacine
03-13-2014, 09:37 PM
Linda,

I see....

What do you think about throwing up the “Do I need surgery” quiz here on its own thread?

It’s a good way to gage where one stands on making a decision.....

I took it a few times and on different days and tried to score low (not needing surgery) and then averaged the test scores.

I’m sure many did the same thing.

Ed
I'm fairly certain it's not going to format well, but here it is.

IS SCOLIOSIS SURGERY RIGHT FOR YOU?
While scoliosis surgery has helped many people, including myself, to lead better lives, it's not the right solution for everyone. Following are some questions that you might consider if you're trying to make the decision about whether or not to have scoliosis surgery. While these questions are targeted at adults with idiopathic scoliosis, many of the questions are appropriate for other types of scoliosis. Also, please note that you may not be able to answer all of the questions. If that happens, please just go on to the next question.
Take out a sheet of blank paper, and draw a line down the center. Label one column SHOULD HAVE SURGERY, and the other one SHOULDN'T HAVE SURGERY.

• What is the Cobb angle of your largest curve?
◦ If you have a LUMBAR curve that is 40 degrees OR GREATER, put 2 points in the SHOULD column.
◦ If you have a THORACIC or CERVICAL curve that is 50 degrees OR GREATER, put 2 points in the SHOULD column.
◦ It seems that most reputable scoliosis surgeons recommend surgery for patients whose curves are at least 50 degrees . Research shows that if your largest curve is under 50 degrees , there's a reasonable chance that your curve(s) won't increase. Really large thoracic curves can have significant health considerations, and should almost certainly be operated, regardless of your answers to the remaining questions.

• What is your current age?
◦ Add 1 point to the SHOULD column if you're LESS THAN 30 YEARS OF AGE AND HAVE AT LEAST ONE CURVE >50 degrees .
◦ Add 1 point to the SHOULDN'T column if you're 30 OR OLDER AND HAVE A CURVE LESS THAN 50 degrees .
◦ There are several considerations in terms of age. First, if you're young, and your curves are large, experts say that you can expect your curves to increase 1 degrees to 2 degrees a year. So, if you have a 50 degrees curve at the age of 20, you might have an 80 degrees to 110 degrees by the time you're 50 years old. On the other hand, if you're age 50, with a 50 degrees curve, your decision will be a little harder. You also need to know that recovery from surgery at the age of 20 is going to be somewhat easier than recovery at the age of 50.

• Has progression of at least 5 degrees been documented since skeletal maturity?
◦ If you've documented AT LEAST 5 degrees PROGRESSION, add 2 points to the SHOULD column.
◦ If you've documented AT LEAST 10 degrees PROGRESSION, add another 2 points to the SHOULD column.
◦ If your curve(s) HAVEN'T INCREASED, OR INCREASED LESS THAN 5 degrees , add 2 points to the SHOULDN'T column.
◦ Curve measurements aren't always precise. Studies have concluded that there can be up to 5 degrees margin of error in either direction when one doctor measures the same x-rays twice. There can even be a difference in measurement from morning to afternoon. One should probably never base their surgery decision on progression (or lack thereof) in a single year, unless progression is really excessive. Progression is probably best monitored over a period of more than two years. Also, if you have significant pain or disfunction, curve measurement is really meaningless. Curves that haven't progressed may never progress. So, if you're living a normal life without a lot of pain, there's a reasonable possibility that you'll be able to avoid surgery.

• Do you have significant back or radicular leg pain, or loss of function?
◦ Add 3 points to the SHOULD column if you COMMONLY EXPERIENCE SIGNIFICANT LEG OR BACK PAIN.
◦ Add another 3 points to the SHOULD column if you've had TO GIVE UP ON ACTIVITIES THAT YOU LIKE.
◦ Add 2 points to the SHOULDN'T column if you HAVE ONLY MODERATE PAIN ON AN OCCASIONAL BASIS.
◦ Add another 2 points to the SHOULDN'T column if you PRETTY MUCH DO WHATEVER ACTIVITIES YOU WANT.
◦ Studies have shown that the majority of adults without scoliosis have at least occasional back pain. So, your pain may actually be a normal part of aging. If you have moderate pain on an occasional basis, most experts would recommend that you try conservative treatments, or just allow the pain to run its course. On the other hand, if you have significant pain much of the time, or have lost the ability to perform activities that you enjoy, you might want to think seriously about surgery.

continued below...

LindaRacine
03-13-2014, 09:38 PM
• Have at least two surgeons who specialize in the treatment of scoliosis, recommended surgery?
◦ Add 1 point to the SHOULD column if AT LEAST TWO SURGEONS HAVE RECOMMENDED SURGERY.
◦ Add 1 point to the SHOULDN'T column if you've ONLY SEEN ONE SURGEON, or if ANY QUALIFIED SURGEON RECOMMENDED THAT YOU NOT HAVE SURGERY.
◦ First, please be sure that you've selected surgeons who routinely treats spinal deformities. In 1999, 1,500 surgeons performed fewer than 10 scoliosis surgeries each. In "The Scoliosis Sourcebook" by Dr. Michael Neuwirth, he states "There's no magic number that defines how much experience is enough, but I would say that a surgeon should handle a minimum of 100 spinal surgery cases per year. Unless at least 25 to 50 of these are scoliosis surgeries, I would keep looking."
◦ Although I'm sure there are good scoliosis surgeons who aren't members, and probably some bad surgeons who are, the Scoliosis Research Society is the best place to start in terms of finding a good surgeon. You can find a list of SRS members in your area here.
◦ I've found that many qualified surgeons steer their patients to or away from surgery, so if they have a specific recommendation, you should certainly take that into consideration. Some surgeons are naturally more conservative than others. Most good surgeons want happy patients, and will not recommend surgery if they think the patient will be worse after surgery. I've found that some surgeons who do few scoliosis surgeries, steer patients away from surgery. While that's probably not helpful in many cases, it's probably better than these surgeons performing the surgeries themselves.

• Have you tried at least one or two conservative methods (physical therapy, injections, etc.) to treat your scoliosis?
◦ Add 1 point to the SHOULD column if you've TRIED AT LEAST TWO NON-SURGICAL TREATMENTS.
◦ Add 1 point to the SHOULDN'T column if you've NEVER TRIED ANY NON-SURGICAL TREATMENT.
◦ If your curves are moderate, you have moderate pain, and no loss of function, I would recommend that you consider conservative treatment options. There are many treatments that have been reported (although not proven) to reduce the pain often associated with scoliosis.

• If you've chosen a surgeon, have you spoken to patient references?
◦ Add 1 point to the SHOULD column if you've TALKED AT LENGTH TO AT LEAST 2 PATIENTS WHO HAD PROCEDURES SIMILAR TO WHAT HAS BEEN RECOMMENDED FOR YOU.
◦ Add 1 point to the SHOULDN'T column if HAVEN'T CHECKED ANY REFERENCES FROM YOUR SURGEON.
◦ While surgeons aren't likely to put you in touch with patients who had bad outcomes, reputable surgeons will give you the contact information for several previous patients. I strongly recommend that you contact them. These patients are your best bet for learning about what you might expect to experience if you choose to have surgery. If there's a scoliosis support group in your area, you might hear good and bad things about surgeons there. Also, a great place to check out surgeons and hospitals, is on the National Scoliosis Foundation Forums, where you can do a search by the name of the physician or hospital. You should always keep in mind that every surgeon has patients with good outcomes and patients with bad outcomes. In fact, you may be more likely to hear about bad outcomes by surgeons who do the most scoliosis surgeries, because they probably take on the most difficult cases.

• Do you have good health insurance?
◦ Put 1 point in the SHOULD column if you CURRENTLY HAVE GOOD HEALTH INSURANCE.
◦ Put another point in the SHOULD column if YOU THINK YOU MIGHT LOSE YOUR HEALTH INSURANCE, OR THAT THE QUALITY OF YOUR INSURANCE WILL DECLINE IN THE FUTURE.
◦ Put 1 point in the SHOULDN'T column if YOU HAVE POOR INSURANCE COVERAGE.
◦ Add another point to the SHOULDN'T column if YOU THINK YOUR INSURANCE COVERAGE WILL IMPROVE IN THE FUTURE.
◦ You may not always have great health insurance. If you're in a group plan, the insurance company has to cover your spine. However, if you become self- or unemployed, you may end up with no health insurance, or a plan that includes a pre-existing condition clause that excludes any spine treatment. There are other considerations in terms of insurance. For example, if your insurance is an HMO or POS plan, you may find that you cannot select your choice of surgeon. Also, you should read the "Evidence of Coverage" provided by your insurance company. You may find that you'll have to pay a significant portion of the charges. Scoliosis surgery in the U.S. starts at about $200,000 and sometimes exceeds $1,000,000. If you think you'll eventually need scoliosis surgery, find a job that provides good health insurance. Once you're "off the grid", you may not be able to get treatment until you reach Medicare age, and perhaps in the future, not even then. 
So, if you've got good insurance now, and you think that you'll eventually have to have surgery, now may be the best time.

• Do you have small children, or plan to have children in the future?
◦ Put 1 point in the SHOULD column if you YOUR YOUNGEST CHILD IS AT LEAST 18 YEARS OLD, OR IF YOU HAVE NO CHILDREN.
◦ Put 1 point in the SHOULDN'T column if YOU HAVE A CHILD UNDER THE AGE OF 18 IN YOUR HOME.
◦ Add another point to the SHOULDN'T column if YOU HAVE A CHILD UNDER THE AGE OF 10 IN YOUR HOME.
◦ This is probably the most difficult question to address. If you have small children, or plan to have small children, there's probably no perfect time to have scoliosis surgery. Handling children, especially doing things like putting them into car seats, is just brutal on your back. If you choose to have surgery, the discs above and below your fusion may be at increased risk of degeneration. So, carrying a heavy child may eventually lead to more pain and perhaps more surgery. If you can wait to have your surgery until your children are self sufficient, you may have an easier time.

• Do you have someone to help you at home after your surgery?
◦ Add 1 point to the SHOULD column if YOU HAVE SOMEONE WHO CAN STAY WITH YOU IN YOUR HOME FOR AT LEAST TWO WEEKS AFTER YOU'VE BEEN RELEASED FROM THE HOSPITAL.
◦ Add 1 point to the SHOULDN'T column if YOU DON'T HAVE SOMEONE TO HELP YOU AT HOME AFTER YOU'VE BEEN RELEASED FROM THE HOSPITAL.
◦ If you choose to have surgery, you'll be somewhat out of commission for at least a month or two afterward. During that time, do you have someone who can step in and take care of you, your pets, and any dependent children in your household? I've known adults who have had surgery, and who did not require any help at home afterward. I've also known adults who have had surgery, and who needed help to even get in and out of bed. So, if you don't have someone to help after surgery, you might want to consider holding off until you do have someone, or can afford to hire someone. Something else to consider is whether someone can stay with you in your hospital room. Many patients tell me that having a family member or close friend who stayed with them 24/7 is more than a little helpful. 
Here's a good list of things to make your life easier when recovering from scoliosis surgery.


Continued below.

LindaRacine
03-13-2014, 09:39 PM
• Do you know the risks involved with surgery?
◦ Add 1 point to the SHOULD column if YOU FEEL THAT YOU'RE COMPLETELY INFORMED ABOUT THE RISKS OF SURGERY.
◦ Add 1 point to the SHOULDN'T column if YOU HAVEN'T INVESTIGATED THE RISKS.
◦ While most people have good surgical outcomes, there are plenty of bad things that can happen to you. The list of potential complications is long, and there's a reasonable chance that you'll have at least one, especially if you're age 50 or older. Complications such as pseudarthrosis (non-fusion) and infection may require additional surgery. While very rare, severe complications include things like permanent neurologic damage and death. Links to some abstracts for scoliosis surgery outcome studies can be found here. As mentioned elsewhere in this document, your age, general health, and choice of surgeon may reduce or increase your risks.

• Do you have realistic expectations in terms of reduction of pre-surgery pain?
◦ Add 1 point to the SHOULD column if YOU HOPE TO HAVE A REDUCTION IN PAIN.
◦ Add 1 point to the SHOULDN'T column if YOU HAVEN'T CONSIDERED THAT YOU MIGHT END UP IN MORE PAIN.
◦ If you're expecting scoliosis surgery to resolve all of your pain, you may be very disappointed. Studies show that most people are happy with the outcome of their surgeries. However, not everyone gets a big reduction in pain, and in fact, I've heard of some patients who had an increase in pain. Many patients report that they've exchanged one type of pain for another. While most teenagers report no pain after the initial recovery period, that's not the case for adults. Adults only rarely report that they're pain free after the initial recovery period. If you have realistic expectations, I believe you're more likely to have a good outcome.

• Do you have other health issues?
◦ Add 1 point to the SHOULD column if YOU'RE HEALTHY.
◦ Add 1 point to the SHOULDN'T column FOR EVERY MAJOR HEALTH PROBLEM YOU HAVE WHICH YOU BELIEVE MAY MAKE SURGERY MORE DIFFICULT.
◦ If you've smoked for a long time, or have a very large thoracic curve, your pulmonary function may be so poor that you would not be a good surgical candidate. Eating disorders or obesity can make surgery or recovery very difficult. In addition, conditions such as cancer, diabetes, blood disorders, heart disease, etc. may put the patient at increased risk of complications. Most surgeons will not perform scoliosis surgery on patients who smoke, as smoking is known to increase the failure rate of fusion. You should discuss any of these concerns with your surgeon.

• Is the potential for cosmetic improvement important to you?
◦ Add 1 point to the SHOULD column if YOU LOOK FORWARD TO LOOKING BETTER.
◦ Add 1 point to the SHOULDN'T column if YOU COULD CARE LESS ABOUT HOW YOU LOOK.
◦ While surgeons rarely operate on patients whose only complaint is the way they look, they certainly take this into consideration. A good scoliosis surgeon can get a good amount of rib hump correction during the derotation part of scoliosis surgery. Some patients report that their rib humps reappear after surgery. If the cosmetic aspect is especially significant in your mind, I urge you to find a surgeon who routinely performs thoracoplasties. Also don't forget that you're going to end up with scars. While most people report that the scar that runs down the spine is minimal after a few years, it bothers some people, especially those who end up with adhesions which result it more prominent scarring. Also, if you're having surgery on the anterior part of your spine, the resulting scar may be quite a bit more noticeable than a posterior approach scar. If this concerns you, I recommend that you bring it up with your surgeon.

• Are you at at stage in your life when it might be convenient or inconvenient to be out of commission for awhile?
◦ Add 1 point to the SHOULD column if BEING OUT OF COMMISSION FOR UP TO 6 MONTHS WOULD NOT BE A PROBLEM.
◦ Add 1 point to the SHOULDN'T column if YOU HAVE COMMITMENTS OVER THE NEXT 6 MONTHS THAT WOULD BE DIFFICULT OR IMPOSSIBLE TO AVOID.
◦ Many people plan their scoliosis surgeries for a time of school/career/life changes so that their recovery time has little impact on anything. In my own case, I planned my surgery more than a year in advance so that I could be sure I had as little impact as possible on myself and my clients.


INTERPRETING THE RESULTS
Now, add up the points in each of the columns. Hopefully, the results will help you quantify whether scoliosis surgery might be right for you. If you find the the final values in the two columns are close, I encourage you to discuss the results with your scoliosis specialist, who may be able to tip the scales in one direction. This test should, by no means, be the only thing you consider when making your decision.
I am not a medical professional, and do not have any medical training. I've learned these things by talking to hundreds of scoliosis patients, and many of their physicians. Your spinal deformity surgeon is the most important source of information for your particular problems.

titaniumed
03-13-2014, 10:36 PM
Thanks Linda. This brings back memories........Of course, this is a mandatory read.

Ed

Irina
03-13-2014, 10:55 PM
@ Irina: what part of your spine were fused?

Sounds like both of your surgeries went well.

I am fused T6 to S1. My surgeries were successful and I am very happy with the end result, but I had a complication - abdominal hematoma that brought me back to the hospital for an emergency surgery. It is all behind me now, but first month of recovery was hell. I was in a good physical shape going in and did not expect a complication like this.

rohrer01
03-14-2014, 12:27 AM
I took the survey and am SHOCKED to say the least!
My scores:
Should: 19
Shouldn't: 7

I honestly thought that the "shouldn't" would win over the "should" by a ton. It wasn't the curve magnitude that made my score higher. It was things like quality of life, pain, not being able to do things I used to do, having insurance, timing, and caregiver. Things like that really wracked up the should side. I even said I didn't care about my appearance. I'm pretty balanced and am a little afraid of surgery making me unbalanced again. I lived for years being unbalanced and having to alter all of my clothes. I don't have to do that any more since I've had about 20o progression in my lower curve. As long as I don't wear anything super tight, it's not that noticeable. I also have four other health conditions that could interfere with my surgery/outcome or recovery ; arrhythmia (never caused a problem), muscle disease/dystonia, intestinal issues/underweight (had previous ileus after one surgery), and mild asthma (never bothered when I took albuterol right before anesthesia). Honestly, with a grey area curve, do those things really matter that much?

Rohrer01

Jinseeker
03-15-2014, 02:32 AM
Thanks for that survey Linda.

I happened to received a score of
should 11
shouldn't 10

Still pretty undecided though. It's a close one, especially the over 50 degrees part where I added 2 points to the should column.

My chiropractor interprets my main curve to be at 51, my most recent orthopedic surgeon interpreted it at 47. That could slash 2 points off the should column turning the results around completely.

titaniumed
03-15-2014, 05:54 AM
Another parameter one might consider would be on the “complexity” of ones surgery. This of course would be hard to judge for a layman, but when you look at something like a thoracotomy, or a thoracoplasty (rib hump removal) this does shift the weight of the decision. I have read that these and any large “open” anterior procedures are the most painful surgeries that are done. My surgeon told me that my ALIF was going to be extremely painful and that they would keep me under for a few days in ICU since I wouldn’t be able to handle that pain. He was correct, it hurt like hell. My decision was based heavily on major pain for years before my surgeries. I added more points to the have surgery column since this was a major factor in my decision.

In defining pain, it takes a bit of experience to know what major pain feels like.....what you think might be pretty bad, isn’t. I can give an example of a few extreme pain events in my case....

1) Muscle spasms can be just brutal.....(Feels like stabbing knives) I had this happen after a skiing competition. Oral muscle relaxers are “light duty” meds. Chiropractic and accupressure worked well for this situation.
2) Disc herniation’s can be a tough situation....I would get a massage, be completely out of pain, then go sit in my car and notice that upon sitting, the nerve pain would be triggered in a few seconds, and be in tears since it was like line voltage. This is a 9-10 level pain scenario. Sitting down was hard and made driving extremely difficult. Chiropractic doesn’t work for this situation. I tried for years.....I’ve done that study.
3) Renal colic from kidney stones is the grand puba....I rate this a 15 on a 1-10 scale, its mind blowing. Dark urine needs water for dilution.
4) Nerve related disc pain is like a loud fire bell next to your ear, a signal that something is seriously wrong.

Begging hospital staff to be knocked out with injectables due to these maximum pain events is an indicator that your there. I have done this before and after my surgeries. It’s a “survival mode” situation.

Oral pain medications simply don’t compare to injectable’ s or IV meds given in the hospital. There is a HUGE difference.

You will know when life gets difficult.....really difficult. These kinds of pain will weigh heavily in a surgical decision. Revision patients know this so well.

Ed

LindaRacine
03-15-2014, 12:49 PM
Another parameter one might consider would be on the “complexity” of ones surgery. This of course would be hard to judge for a layman, but when you look at something like a thoracotomy, or a thoracoplasty (rib hump removal) this does shift the weight of the decision. I have read that these and any large “open” anterior procedures are the most painful surgeries that are done. My surgeon told me that my ALIF was going to be extremely painful and that they would keep me under for a few days in ICU since I wouldn’t be able to handle that pain. He was correct, it hurt like hell. My decision was based heavily on major pain for years before my surgeries. I added more points to the have surgery column since this was a major factor in my decision.

In defining pain, it takes a bit of experience to know what major pain feels like.....what you think might be pretty bad, isn’t. I can give an example of a few extreme pain events in my case....

1) Muscle spasms can be just brutal.....(Feels like stabbing knives) I had this happen after a skiing competition. Oral muscle relaxers are “light duty” meds. Chiropractic and accupressure worked well for this situation.
2) Disc herniation’s can be a tough situation....I would get a massage, be completely out of pain, then go sit in my car and notice that upon sitting, the nerve pain would be triggered in a few seconds, and be in tears since it was like line voltage. This is a 9-10 level pain scenario. Sitting down was hard and made driving extremely difficult. Chiropractic doesn’t work for this situation. I tried for years.....I’ve done that study.
3) Renal colic from kidney stones is the grand puba....I rate this a 15 on a 1-10 scale, its mind blowing. Dark urine needs water for dilution.
4) Nerve related disc pain is like a loud fire bell next to your ear, a signal that something is seriously wrong.

Begging hospital staff to be knocked out with injectables due to these maximum pain events is an indicator that your there. I have done this before and after my surgeries. It’s a “survival mode” situation.

Oral pain medications simply don’t compare to injectable’ s or IV meds given in the hospital. There is a HUGE difference.

You will know when life gets difficult.....really difficult. These kinds of pain will weigh heavily in a surgical decision. Revision patients know this so well.

Ed
Ed...

Thoracotomies and thoracoplasties are almost never done any more. The procedures that add the most complexity these days are pedicle subtraction osteotomies and vertebral column resections, which are rarely done in primary procedures.

Pain is so subjective that I don't think it really makes a great variable. In fact, if someone is already using pain medications on a regular basis, it's probably a negative predictor.

I might, however, add a question about whether an injection significantly resolved pain, for even a short amount of time. They are usually reliably diagnostic, and can often be an indicator of whether surgery will reduce or eliminate a specific pain.

I've mentioned in the past that something surgeons have observed is that patients who are more disabled preoperatively are happier after surgery than those who are less disabled properatively. I'm working on a project at the moment, to look at how patients recover over time. One of the things I did a few days ago, was to look at patients who had low preoperative Oswestry scores (less disability) vs. patients who had high preoperative Oswestry scores (more disability). At 6 weeks, the low preop Oswestry group had a much higher Oswestry score and the high preop Oswestry group had a much lower Oswestry score (meaning that the more disabled group was likely a lot happier at 6 weeks). After 6 weeks, the groups seem to get about the same amount of benefit for the next 6-9 months. Then, at 1 year, the scores of the low Oswestry group starts to increase (gets worse), while the high Oswestry group continues to improve. I should mention that this is all back surgery patients (though the majority were complex procedures). My next step is to look at the groups based on the number of levels fused.

--Linda

rohrer01
03-15-2014, 05:41 PM
I am on pretty high doses of oral pain meds. 50 - 60mg of oxycodone per day. My meds are for the muscle pain. It can be excruciating and even the pain meds don't touch it unless it's only moderate. As for the nerve pain from sciatica.... ha ha ha... oxy's don't even touch it. I get the steroid injections for that. This next time I'm going to wait until I can't walk, like I was the first time. The only problem is that it's starting to go down the right side farther and farther. My left goes down to the bottom of my foot. Today, I had some right sided pain go down to my calf muscles.

I would NOT expect that to improve after surgery. The pain in my neck and shoulder girdle is also muscle pain. I don't know if that would get better or not. I think, because of the dystonia and the rock hard condition of my neck and shoulder girdle muscles, if they dissected them away to get to the spine, there'd be no reconnecting them. They'd probably contract up into massive balls of muscle tissue with no hope of being stretched out again to reconnect them to the spine.

That makes me VERY LEARY...

They would have to find a way to straighten me without dissecting those traps!

titaniumed
03-15-2014, 11:34 PM
Linda

There are a bunch of thorocoplasty (costoplasty) people on SOS....and they seem to be doing them in England....??? Could this be an age thing? (Younger posters) Your right about here, I have not seen one thoracoplasty poster in 6 years on NSF. Knowing if you do need something special like pedicle subtraction osteotomies or VCR’s or any non-standard invasive procedure should be weighed out. Difficult non-standard procedures do throw a wrench in the gears.

Your right on pain being so subjective, its why I try to convey what its like having extreme pain versus the old aches experienced when I was in my 30’s. I also came through just fine, from 9-10 pain to 0-1 pain. Hard to believe but true. I had complete sciatica relief, no lower back pain and no leg pain.

Pinpointing pain with a shot might not be a bad one to add.....I never had this done. I had a shot scheduled in 2002 but lack of communication with another surgeon’s assistant was bleak, and I was out of town doing ocean therapy. (which worked for a year)

We will be very interested on the study of groups based on number of levels fused.....Would this be only the scoli’s or would it also include non scoli’s?

“Only the Scoli” sounds like a Roy Orbison song....(smiley face)

Rohrer

I never took opoid’s before my surgeries....only NSAID’s ...Celebrex, Bextra, and Naproxen. I have no idea how opoid’s would work in your situation. I do know that weaning from surgery wasn’t the smoothest of things...On orals at 6 weeks I peaked at 100mg of Percoset mainly due to constipation.....it was a disaster.
Opoid constipation was another extreme(colon exploding) pain event for me.....funny how its one thing or another, extreme pain seems to block out other pains. My broken shoulder and arm wasn’t even registering during that period, it didn’t even matter.

Ed

LindaRacine
03-16-2014, 12:48 AM
Hi Ed...

I can't imagine why they'd still be doing thoracoplasties in England. All of the implant systems in use today, at least in the hands of experienced surgeons, do very thorough derotations. (There's an animation of a derotation procedure HERE (https://www2.aofoundation.org/wps/portal/surgery?showPage=redfix&bone=Spine&segment=Deformity&classification=55-Adolecent%20Idiopathic%20Scoliosis,%20Lenke%203&treatment=&method=Double%20Major&implantstype=Posterior%20Screws%20-%20With%20direct%20vertebral%20body%20derotation&approach=&redfix_url=1380625466996&Language=en).) It's possible that SOS is behind the times, and it's just their patients posting. Scary! I do know one British scoliosis specialist. I'll try to remember to ask him when I next see him.

I think number of levels is more indicative of complexity than diagnosis is. It's very unlikely that anyone with 7+ levels fused has anything other than deformity. And, using diagnosis might be a little deceptive because there are more than a few degenerative scoliosis patients who have only 2-3 levels fused, and many of those patients have a chief diagnosis of stenosis.

--Linda

LindaRacine
03-16-2014, 12:54 AM
funny how its one thing or another, extreme pain seems to block out other pains. My broken shoulder and arm wasn’t even registering during that period, it didn’t even matter.

Ed

So true. I've always thought it must be because one or two things: 1) it's possible for the brain to block some amount of pain you've had for a long time, and 2) we expect pain in the area of the surgery, but the new pain is unexpected, and thus worrisome.

After my surgery 3 years ago, I had zero back or sciatic leg pain after surgery. But, the pain I had from trochanteric bursitis was really difficult for me. I look back now and think I was being totally wimpy. But, at the time, the pain was very real and very difficult for me.

LindaRacine
03-16-2014, 12:59 AM
Ed...

I just looked up SOS and see that they're not physicians. I haven't checked out their forum, but I would definitely be a little suspicious about patients posting that they've had thoracoplasties.

--Linda

Pooka1
03-16-2014, 03:49 AM
It's a forum much like this one except no research section. Lucky them.

It's patients like this one and I agree with TiEd about the incidence of thoracoplasties in the UK... it appears to be much more common than here. But I don't know why... they are using pedicle screws also.

There is some sense from the testimonials that they are less frequent than prior but I can't prove that.

Jinseeker
03-16-2014, 05:40 AM
I am on pretty high doses of oral pain meds. 50 - 60mg of oxycodone per day. My meds are for the muscle pain. It can be excruciating and even the pain meds don't touch it unless it's only moderate. As for the nerve pain from sciatica.... ha ha ha... oxy's don't even touch it. I get the steroid injections for that. This next time I'm going to wait until I can't walk, like I was the first time. The only problem is that it's starting to go down the right side farther and farther. My left goes down to the bottom of my foot. Today, I had some right sided pain go down to my calf muscles.

I would NOT expect that to improve after surgery. The pain in my neck and shoulder girdle is also muscle pain. I don't know if that would get better or not. I think, because of the dystonia and the rock hard condition of my neck and shoulder girdle muscles, if they dissected them away to get to the spine, there'd be no reconnecting them. They'd probably contract up into massive balls of muscle tissue with no hope of being stretched out again to reconnect them to the spine.

That makes me VERY LEARY...

They would have to find a way to straighten me without dissecting those traps!


Despite all the issues you are facing, you still decide to put off surgery. Forgive me for asking, but are you exactly sure that those negative predicaments you mentioned are really going to happen post-op that make you shy away from having an operation? I understand your worries, but at least by jumping into surgery you might have a chance of turning your situation around especially when your curvature is still progressing or at the very least, end up in the same situation you are already in now but with a stable spine.

Things may not really get any better for you by waiting. Just my two-cents.

titaniumed
03-16-2014, 11:42 AM
Ed...

I just looked up SOS and see that they're not physicians.
--Linda

You don’t take a journey to the center of the earth with just a shovel......I cant see someone having the gall to take on anything more than what they are trained for. These docs have to get signed off on particular procedures......this only makes sense. These guys are UK’s best.

I don’t know about the British system and how they designate their surgeons. It a positive ground, 50 cycle, drive on the left sort of thing. (smiley face) You gotta love em! Perhaps Tonibunny will chime in on this matter. I have seen the photos of thoracotomy scars under the armpits to access the chest. Crystal, my goddaughter is in her pediatric emergency training residency and she will train to do this....Of course, on an emergency basis in 3 minutes to save a child’s life. She has been in school now for 10 years, and has around another 8 years plus to go. This is an intense program. We taught her to bite off more than you can chew.....it backfired. Be careful what you say to your kids. (She is gone and I don’t see her anymore)

I mention the age thing since it seems that the costoplasty posters are teenaged females.....perhaps looking for the zero rib hump perfect back???? Some seem to be doing ok after such a brutal procedure....Wow!

I also brought this up because Jin is in Singapore....and the remote possibility that he could hear these terms out there. Even if one doesn’t know them, asking a surgeon where scar location is extremely important!!!! This is the easiest barebones way of knowing what could happen. My surgeon took his finger and drew the incision lines on me. I knew where my anterior scar was going to be. If a surgeon draws a line under the armpit, or perhaps behind the hip for grafting material, these are indicators that you are not having a “standard” posterior procedure and you know he plans on cutting on the hip for autograft and we know that’s not a great scenario these days due to hip pain.

Just some nuts and bolts hands on experience.....

Ed

titaniumed
03-16-2014, 01:02 PM
Hi Ed...

I think number of levels is more indicative of complexity than diagnosis is. It's very unlikely that anyone with 7+ levels fused has anything other than deformity. And, using diagnosis might be a little deceptive because there are more than a few degenerative scoliosis patients who have only 2-3 levels fused, and many of those patients have a chief diagnosis of stenosis.

--Linda
Linda, This is not going to be easy. This is a huge project. There are a ton of questions to address....Wow!

Some congenital kids have other comorbidity’s that complicate matters. This is going to require multiple grouping.

Maybe it would be best to start with AIS patients first? This being the most common, and considering the future.....I hate to place adults secondary and the kids with multiple comorbidity’s. in this group, but trying to get some faster results with an “easier group” might make sense. Like age 15-16 T4-L1. Is this the most common?

Am I right in saying this?

I worry about my neck and don’t worry about my lumbar....Fusing the neck above a full fusion seems to be more of an issue for me....If I had my surgeries at age 30, what would be the future of my neck? This is why I say study the younger groups. Fuse up to T2? T3? T4? Fuse down to L2? L3? L4? Pelvis?

We are just like the Bay Bridge when you think about it....When we repair a small section, what happens later?
http://en.wikipedia.org/wiki/Bay_Bridge_(California)

I know I pitch a ton of questions....and I think its ok because it makes people think about surgery. I don’t need a reply since its complicated.

On a lighter note, I cant believe there are no Roy Orbison fans here.....What are we going to do about this? (smiley face)

Ed

Pooka1
03-16-2014, 02:14 PM
On a lighter note, I cant believe there are no Roy Orbison fans here.....What are we going to do about this? (smiley face)

“Only the Scoli” sounds like a Roy Orbison song....(smiley face)

Ed

I thought that was hilarious! Exactly. :-)

Pooka1
03-16-2014, 02:26 PM
Jinseeker, here a video by Dr. Lloyd Hey explaining to a patient why her formerly small curve collapsed - discs wore out. She is 50 but her curve was low so there was no reason to rush to save the lumbar as it was already involved.

http://www.youtube.com/watch?v=9ynhz7QzONQ

LindaRacine
03-16-2014, 03:08 PM
Linda, This is not going to be easy. This is a huge project. There are a ton of questions to address....Wow!

Some congenital kids have other comorbidity’s that complicate matters. This is going to require multiple grouping.

Maybe it would be best to start with AIS patients first? This being the most common, and considering the future.....I hate to place adults secondary and the kids with multiple comorbidity’s. in this group, but trying to get some faster results with an “easier group” might make sense. Like age 15-16 T4-L1. Is this the most common?

Am I right in saying this?

I worry about my neck and don’t worry about my lumbar....Fusing the neck above a full fusion seems to be more of an issue for me....If I had my surgeries at age 30, what would be the future of my neck? This is why I say study the younger groups. Fuse up to T2? T3? T4? Fuse down to L2? L3? L4? Pelvis?

We are just like the Bay Bridge when you think about it....When we repair a small section, what happens later?
http://en.wikipedia.org/wiki/Bay_Bridge_(California)

I know I pitch a ton of questions....and I think its ok because it makes people think about surgery. I don’t need a reply since its complicated.

On a lighter note, I cant believe there are no Roy Orbison fans here.....What are we going to do about this? (smiley face)

Ed
We don't collect outcomes on kids, so my audience will be all adults.

rohrer01
03-16-2014, 05:23 PM
Despite all the issues you are facing, you still decide to put off surgery. Forgive me for asking, but are you exactly sure that those negative predicaments you mentioned are really going to happen post-op that make you shy away from having an operation? I understand your worries, but at least by jumping into surgery you might have a chance of turning your situation around especially when your curvature is still progressing or at the very least, end up in the same situation you are already in now but with a stable spine.

Things may not really get any better for you by waiting. Just my two-cents.

Well, the thing is for me, I have not found a doctor yet that has even seen a curve like mine. MY doctor will NOT do the surgery because he says he WILL hurt me. I'm not allowed a second opinion because of my insurance company. So, even IF I found someone who was familiar with a curve like mine and had worked on them successfully, my insurance wouldn't pay for it. I don't have $2,000,000 to pay for it myself. I am also looking at a possible 15 level fusion. After that, I will be left with bad discs in my neck that I already have and the DDD in my L5/S1.

I was ready to take the plunge back in 2010. My doctor was ready to do the surgery because he saw what he interpreted as a rapid progression of both curves. When I saw him two years ago, he said there was no progression and measured ALL of the x-rays I posted at 42o and didn't even look at the lower curve that any layman can see has progressed significantly since 2005. If I could post my 1999 x-rays (I can't because they are on films) you would be really shocked at how much worse it is now compared to then.

So this doctor, the one and only one I'm allowed to see, has been very inconsistent in what he tells me. For the first 10 years, he was very consistent and now he's so wishy washy that I don't trust him. I've also seen some negative reports that scare me. One lady needed over 7 units of blood, another person on this forum wrote me cautioning me that insurances in my state view him as the almighty final say AND he took one of ribs out during surgery and didn't tell her he was going to do this prior to surgery. He has no time for people with pain. The last lady I mentioned told him how much pain she was still in. He apologized and said, "I'll see you next year."

On the flip side, I have a friend that had a fusion with him and she was very happy, although she had/has a lot of residual pain YEARS later. She also has scoliosis, so I assumed that's what the fusion was for. When we got to talking, I asked her how long her fusion was and it was only a two level fusion!
I also met one of his patients in the waiting room while we were both waiting for x-rays. She was an older lady going back for a revision. She was really happy with her surgery with him. She said he fixed quite a large scoliosis. She, like Ed, was an avid skier. So, even though she really needed a full fusion to the sacrum, he left the bottom unfused per her request so that she could get in a few more years of skiing. She KNEW going into it, that she would need a revision to sacrum when that last disc finally wore out. So she was there to have that done. She had nothing but glowing praise for him.

So, I've heard both good and bad outcomes. When I asked him how many curves like mine he'd seen, he said that he sees one every year or two. I asked him specifically if they were "lefties", and he said, no, it was a mix, but mostly right curves. So, does this include me? He sees me every couple of years! He's not that old. His kids are far younger than mine are, while I realize that he probably put off having kids for at least a decade and a half compared to me. But I'm going to guess that he's about 50, maybe. So after all the training that he's had, how long has he been on his own? Even if it's 20 years, if he sees a high curve every two years, that's only 10 cases! How many of them were "tight" curves like mine? He didn't address that. How many were actually "lefties"? He didn't address that, either. THOSE are very important factors in a scoliosis surgery. My heart sits on the left!

If he were to go in strictly from the back, he is going to run into the muscle problem that I mentioned. Because this curve is so stiff, if he elected to remove the discs to loosen the curve, he would have to deflate my left lung and work around my heart. They do this with instrumentation like they use for laparoscopies, not sure if they call it thorascopic, but makes sense if they do. But the risk is there that there may have to be a full thoracotomy if something went wrong.

So, then, IF everything went smoothly with no complications. I will have a 14 or 15 level fusion with pre-existing degeneration above and below that fusion. I'm not really sure how long my degenerate discs are going to last at this point as it is. I had an orthopedic doctor (he did my shoulder surgery) tell me that my neck was a MESS! He was leary of doing my shoulder surgery because he wasn't convinced that my shoulder and arm pain weren't coming from my neck. It turned out to be the shoulder, but I'm a real mess!

So would I be better off letting this guy, or insisting that this guy do the surgery? I don't think so. There is at least one other doctor in the same practice that does these surgeries. I took my DIL to see him. But he was asking me questions about how MY doctor was handling my case and making decisions for her based on how often MY doctor sees me. So, I'm assuming that he's trained under my doctor as he seem quite in awe that I was seeing him.

So there you have it. I might have surgery, IF I could get a top notch guy like Lenke. But those guys won't even look at someone who has less than a 70o curve. MAYBE, because my heart is squished at such a small curve angle, someone would agree to see me. But my insurance is only going to let me see the one here.

With this in mind would YOU want to insist on having surgery?

Why are you choosing Singapore to have your surgery, other than money? I know a lot of people are going overseas for major operations because cost is cheaper. But, you sacrifice any recourse if you get a subpar surgery. That to me is a little scary. If you are in process of emigrating to Canada, why not wait until you are there and get it done for free? They have excellent surgeons there, too.

rohrer01
03-16-2014, 05:52 PM
Oh, and I'm tall. I'm 5'7-1/4" WITH my scoliosis and am having a hard time with weight. I don't have any to lose. I'm bouncing between 110 - 113#. I also have a muscle wasting disease. I saw the geneticist on Wednesday and she still thinks I have Myotonic Muscular Dystrophy despite my two other screening tests coming out negative. My physical exam seems pretty concerning and I will be getting a DNA panel done to check for dystrophies, Charcot-Marie Tooth, and mitochondrial defects. Even if they all come back negative, I'm still losing muscle mass quite rapidly. With no fat to spare, either, I really don't know how I would fare with a huge fusion. People always lose weight, at least initially, after large operations.

The asthma is mild, but I did get pneumonia once after about a 4-1/2 hour surgery a few years back.
My gut problems are likely connected to the muscle wasting problem, as it can affect smooth muscle, cardiac muscle, as well as skeletal muscle. I developed an ileus after another shorter surgery. It was so painful. It gave me fever and I could barely swallow water. The longer you are under (my understanding) the greater risk of an ileus. The surgery that caused the ileus was less than two hours. At this point, I'm having difficulty swallowing. The voluntary part is starting to go, although I am still able to eat, I am very cautious. The involuntary part of the swallow malfunctions almost every time. When the food stays in the esophagus, all I have to do is lean over and it runs back out of my mouth. Gross, I know. It's either still in the esophagus or the cardiac sphincter at the top of my stomach (not a true sphincter in the sense of the word) is not working to keep food in if I'm not upright. Eating is a HUGE issue for me.

Pooka1
03-16-2014, 06:40 PM
Rohrer, that is quite the rundown.

I just had a thought that Lenke might take you because your curve is so unusual and you have all that other stuff going on. You might be complex enough for him even though your major curve isn't in surgical range. From what you write, I am not sure I would consider anyone other than Lenke, Boachie, or someone like that. And of course it seems like no surgery is actually better than surgery is a real possibility.

Also, because of your muscle issue, maybe you would be a candidate for minimally invasive surgery?

Hang in there, Rohrer. Thanks for writing that out.

susancook
03-16-2014, 09:22 PM
Rohrer, what a list of challenges! Whatever you decide, you need to be very connected to multi-specialists for each of your problems. If you decide to have spinal fusion surgery, I might suggest that you consider a gastrostomy for a few months to improve your nutritional state. That way you could consume a high quality protein diet both preoperatively and postoperatively. Something to consider.

I wish you the best! Susan

jrnyc
03-16-2014, 11:14 PM
hey Ed...i am a huge Roy Orbison fan.

jess...and Sparky

rohrer01
03-16-2014, 11:48 PM
hmf.....so is my hubby....I say to him... Anything you want, you got it, baaaaaaaby!

Susan, I actually had my nutrition checked and am surprisingly well nourished. I'm on lots of Rx vitamins. I thought my potassium might be low because it has been very low in the past. so I had my doc check it and yes, it was low. Not as low as it has been, but below normal. That can affect the heart AND muscles. The only explanation I can think of for that is poor absorption from the GI problem. When I looked it up it said it can cause arrhythmias. But it supposedly causes BRADYCARDIA not tachycardia. Oh well. An ER doc saw my potassium very low once when I went in for my heart. He gave me a potassium pill and my heart rate slowed down to normal in about 20 minutes.

I don't know about the tube feeding thing. I can't drink Ensure or anything like that. They all make me Goooooo. TMI... LOL

Jinseeker
03-17-2014, 01:12 AM
Does anyone post op feel that their muscles get atrophy or are weaker, get more sore quickly then they had been pre-op because of the fusion. Since my surgeon told me that having surgery is like putting a hard brace inside a person's body, I would be wondering if the muscles get atrophied as well from all the stiffness around the spine, especially with the spinal erector muscles.


@rohrer: Singapore is pretty much at par with the western countries when it comes to scoliosis surgeries since the condition seems very common there. They even have schroth and spinecor rehabilitation there now. But perhaps I can also get it when I immigrate to Canada, but I don't know when and if my visa will get approved.

rohrer01
03-17-2014, 10:23 AM
My DIL has atrophy along her fusion and she complains of her muscles cramping and being sore. She's still glad she had it done.

My worry about having your surgery in Singapore, unless you are a resident there, would be that if someone messed you up, there would be no legal recourse for you. There may not even be any surgical recourse. I'm uneasy about people going out of their own country for surgery. But, that's just my feeling. Of course, for Canadians I feel differently because, while their healthcare is great, they have waiting lists. A couple of kids from there almost died waiting for their surgeries. They both ended up having to come to the U.S. because their curves were well above 100o! They would have died waiting to be seen.

tonibunny
03-17-2014, 07:13 PM
Hi Linda,

I think Ed is referring to the forum that I'm mod/admin at, SSO (scoliosis-support,org, *not* SOS, that's the name of a nonsurgical clinic). I am a member of the NHS's Complex Spinal Surgery Clinical Reference Group and have monthly conferences with a number of the UK's top spinal surgeons as well as hearing from the UK based members at SSO; I can confirm that thoracoplasties aka costoplasties are still being done in the UK for certain cases where the surgeon feels they can get more cosmetic correction than fusion alone. This is by no means every case, and we are seeing fewer of these surgeries performed than in previous years, but it's not a rare occurrence either. In most cases the costoplasty is done at the same time as fusion surgery, though occasionally patients have them done as a standalone procedure at a later date. Most candidates are those who had very large curvatures to begin with, or who had fusion surgery years ago using Harrington Rods and other systems which didn't derotate the spine.

Maybe our UK surgeons are way behind those in the US, I can't comment on that. I'll be at the UK's BritSpine conference next month and will make sure to ask why the costoplasty surgery is much more commonly done over here than it is in your part of the world.













Hi Ed...

I can't imagine why they'd still be doing thoracoplasties in England. All of the implant systems in use today, at least in the hands of experienced surgeons, do very thorough derotations. (There's an animation of a derotation procedure HERE (https://www2.aofoundation.org/wps/portal/surgery?showPage=redfix&bone=Spine&segment=Deformity&classification=55-Adolecent%20Idiopathic%20Scoliosis,%20Lenke%203&treatment=&method=Double%20Major&implantstype=Posterior%20Screws%20-%20With%20direct%20vertebral%20body%20derotation&approach=&redfix_url=1380625466996&Language=en).) It's possible that SOS is behind the times, and it's just their patients posting. Scary! I do know one British scoliosis specialist. I'll try to remember to ask him when I next see him.

I think number of levels is more indicative of complexity than diagnosis is. It's very unlikely that anyone with 7+ levels fused has anything other than deformity. And, using diagnosis might be a little deceptive because there are more than a few degenerative scoliosis patients who have only 2-3 levels fused, and many of those patients have a chief diagnosis of stenosis.

--Linda

Pooka1
03-17-2014, 07:34 PM
Tonibunny! Thanks for clearing that up. We are lucky to have you. :-)

titaniumed
03-17-2014, 10:20 PM
Tonibunny, I guess that’s pretty bad when you don’t know the name of the forum you post on.....(Edith Bunker stare)

Sometimes I post and can barely see my computer anymore. This must be a scoliosis “forum” complication.....funny my surgeon didn’t mention this one. It must have been my Roy Orbison glasses being too dark. (smiley face)

It would be interesting to know why the Americans are reluctant on thoracoplasty and why the British are doing these procedures. I know I mentioned it with my surgeon years ago and he flat out said no....I wonder if this has something to do with the Scoliosis Research Society?

Many posters here have major hesitation when it comes to fusing down low to the pelvis.....and I don’t blame them but I did come out fine in that regard. Now with myself, it’s the anterior thoracic surgeries that scare the heck out of me. I cant imagine what that feels like. Breathing must be rough.

Anyway, trying to keep back on track, I think this weighs on the decision.....and I wouldn’t have had to do my invasive ALIF if I wouldn’t have waited so long.

Timing is so critical.

Jinseeker, The answer is yes, muscles get weaker after surgery, but recover in time. I have permission to lift 100# now.

Ed

LindaRacine
03-17-2014, 10:37 PM
Thanks Toni... I'll be anxious to hear what response you hear. As far as I know, only 1 thoracoplasty has been done amongst the 5 UCSF ortho spine surgeons in the last 4 years. The results they're getting from the current implants are pretty amazing. In a lot of cases, with the exception of the scar, you simply cannot tell that anything was ever wrong.

Are you also hearing about thoracotomies routinely? Our surgeons have occasionally done one (I can only remember one case since I've been there), but they've thankfully become very rare. As someone who got sliced open from about 2" above my waist in the back to about 4" from my belly button, I can attest that this is a barbaric procedure.

--Linda

tonibunny
03-17-2014, 11:46 PM
Sorry Ed, didn't mean to sound stern! I should have put a *smileyface* - it's an easy mistake to make *smileyface*

Linda, I very rarely hear of open thoracotomies - in fact I can't remember the last time anyone mentioned having one. I underwent one myself when I was ten, back in 1986, in order to do a thoracic anterior release (I had a nasty stiff 80 degree curve through having Infantile Idiopathic Scoliosis). My scar from that runs along my ribcage under my breastline and finishes just under my left armpit. I had three weeks in halo-tibial traction then posterior fusion from T1-T12. I also had an anterior/posterior procedure on my lumbar curve when I had my fusion extended to include that curve in 1994. Two-stage surgeries are still fairly common for large curves in the UK though thoracic discs are dealt with via a minimally invasive technique rather than open thoracotomy. I had my fusion extended down a level using the XLIF procedure (with some pedicle screws for stability) in 2006 so I'm now fused T1-L4.

I've had two costoplasties, but I don't know of anyone else that has ever needed two. One was done at the same time as my 1994 surgeries and the other was done in 2001 as it became apparent that a lot more cosmetic correction could be achieved. My back still has a very obvious deformity as I still have a lot of rotation but it doesn't bother me as it is amazing compared to how it looked when I was a child (I started out with a 64/40 degree double curve at six months of age). I feel sad that we seem to be getting increasing numbers of young patients who want to achieve a perfectly flat back and are disappointed with their post-op results, having what I'd consider to be fantastic cosmetic corrections.

Of the spinal surgeons with whom I have monthly meetings, three are members of the SRS. Our group has about 10 surgeons, each representing a different area of the UK, so we only have one London-based representative despite most of the best scoliosis specialists being located there.

Toni

titaniumed
03-19-2014, 12:05 AM
Toni, I shouldn’t have assumed that the old television sitcom “All in the Family” was aired in the UK, but it was a classic show here in the states years ago, and I’m sure many older readers rolled off their chairs in laughter remembering some of her facial expressions. Jean Stapleton was a brilliant actress who played the part of Edith Bunker. Only she could have done it..... She passed away last May and I was thinking about her.....No worries
http://www.youtube.com/watch?v=31D3BU1LbjE

I have always tried to infuse some laughter when at all possible since our discussions and experiences are hard enough to deal with. Some might think, what the heck is he doing, and after, hopefully realize, that in all our seriousness we need to laugh once in a while.....

I agree with you about some patients that are not satisfied unless they have a perfectly flat back and having perfect symmetry. I was told I could be fused “As is” and wasn’t concerned much about anything other than pain relief. Yes, some straightness would be nice, but coming through serious deformity surgery is a blessing. And of course, many years ago its was a different story.

Thanks for chiming in....

Ed

jrnyc
03-20-2014, 12:06 PM
Hey...hey...hey

i am most definitely a Roy Orbison fan...who could not be a fan
of his...? maybe if you are too young to know who he is...was...
but then, if you are too young, may i humbly suggest looking him
up and listening to his music on your computer...?
listen to his voice....or to K.D. Lang sing his songs...
memorable!!!

jess...and Sparky

rohrer01
03-20-2014, 12:59 PM
Hey...hey...hey

i am most definitely a Roy Orbison fan...who could not be a fan
of his...? maybe if you are too young to know who he is...was...
but then, if you are too young, may i humbly suggest looking him
up and listening to his music on your computer...?
listen to his voice....or to K.D. Lang sing his songs...
memorable!!!

jess...and Sparky

I can't stand to listen to Roy Orbison. He's off key a LOT. It just drives me insane. But, my dear hubby loves him. We went online one time and listened to Roy Orbison for hours. Hubby was happy. I just cringed every time he didn't hit the note quite right.

In Roy's defense, he led a very tragic life. Poor man. :'-(