Other Surgeries to Fix Scoliotic Problems

[Tina_R]

My adult onset scoliosis was mostly my lumbar - I am fused T11-Sacrum. 4 of my lumbar discs were basically dried up and gone - but I still had a little bit of my L4/L5 disc. I ended up rupturing that and so I had the nerve pain all the way to my foot. After awhile, I couldn't stand for more than 2 minutes without horrible pain and same for walking - I could barely go 1 block without pain.

At the time, I had 2 daughters engaged and I wasn't willing to have my fusion surgeries before their weddings in case I had a "bad outcome." 4 months prior to the 1st wedding, I had a discectomy to relieve the sciatica pain. It did help somewhat. (of course I still had tons of back pain from bone on bone and all sort of other issues but at least I could walk).

In the 11 months before the next wedding, I could tell I was getting worse. I believe the discectomy destabilized my spine and made me worse. At the time, my surgeon said "This is a bandaid surgery. If you choose this option, I guarantee you I will be seeing you again." But, he understood my predicament and was OK with my choice.

So, you can probably have a smaller surgery and relieve some pain, but in my experience it did make my spine "crumble" faster....

Kathy

Isn't it terrible when surgeries interfere with big events in your life.
Was your scoliosis entirely adult onset? You didn't have a trace of it before, or you just didn't realize it?
I think I had mine all my life but the curve increased very slowly if at all for a long time. It got bad when I approached 50, probably worsened by general deterioration of the skeleton from age. Then the curvature increased noticeably. Then I felt symptoms.

[Tina_R]

I also like the Johns Hopkins site video on radiculopathy. Radiculopathy is a term that incorporates multiple problems on each level without being specific. It includes, Disc herniation, Spinal Cord and Nerve root stenosis (narrowing), nerve impingement, Osteophytes, DDD, Etc. Etc. Fusion is just one part of the equation on each level of the spine. You can't say fusion does not work when there are all these factors on every level of the spine. Only if you know all the other problems are resolved, and proof of a non-fusion, you can say, it didn't work.

I think I can say with confidence that fusion didn't solve my problem. If you have stenosis, how does fusion fix that?

Dictating scoliosis surgical procedures should only be done by "scoliosis trained" doctors trained at credible training centers. Revision patients need surgeons who have a history on working with revision patients. Descriptions of pain and hardship need to be exacting. This is so important. Also swaying any decision by saying "I want this done" or "I don't want this done" is not a good idea. Best to go in blind and just listen. If one is afraid of surgery and conveys that, that's exactly what will happen. PT forever....which can work well in some cases, but be quite the battle should one have multiple disc or inflamed neurological problems. I was there, been there, done that. My surgeon trained at TCSC. It was probably my first question.

You know, there are very few doctors trained at "credible training centers", one of those elite teaching hospitals or universities Linda listed. My surgeon is an alumnus of one of those. I look great, nice and straight, but I can't walk properly. I'm not so sure I particularly need someone from a "credible training center" anymore because I don't need curve correction anymore.

Oh, I'm not afraid of surgery, but I don't want to always be having more and more surgeries, either. When you get into that groove you are always recovering, never back to normal. If another surgery is suggested I would want a targeted surgery that has a good chance of working and that the surgeon can convincingly explain why it will work. I'm going to have less trust and less faith that things will just work out than I did before. I don't have much faith that doctors can always find the causes of problems. I think a lot of the time they make guesses.

My arm and shoulder were broken up bad from a ski crash when I did my scoliosis surgeries and the arm withered away and looked like a toothpick. After my shoulder surgery 9 months later, I got it all back in PT.... 99.9% of it. It came back quickly. I was an orthopedic nightmare when I walked in the hospital for my scoliosis surgeries.

Ed

Well it's good to hear that your muscles can wither and you can still recover, even 9 months later, which is a long time. But people don't always recover from things like this. You were lucky. My problem controlling my legs is still intermittent, it is better sometimes, so that gives me some hope.

You put down so much information I hardly know how to answer you sometimes, Ed. Tiger Woods' case seems irrelevant. Though I greatly appreciate most of the information you post. And yours and everyone's encouragement.

[titaniumed]

I think I can say with confidence that fusion didn't solve my problem. If you have stenosis, how does fusion fix that?

Stenosis is a narrowing of any area of the body. The way to fix stenosis is to clear that area and make room.

The actual process of fusing the spine doesn't have anything to do with clearing an area. Fusing immobilizes the joint by growing a solid bone mass. You can fuse the spine and still have stenosis. You can fuse the spine and completely cover all problems related to any sort of spinal stenosis (cord or nerve root) and still have pain caused by another problem. (Infection and Pseudarthrosis are examples)

Stenosis is just one of many problems that can happen to the spine.

Ed

[LindaRacine]

I think I can say with confidence that fusion didn't solve my problem. If you have stenosis, how does fusion fix that?



You know, there are very few doctors trained at "credible training centers", one of those elite teaching hospitals or universities Linda listed. My surgeon is an alumnus of one of those. I look great, nice and straight, but I can't walk properly. I'm not so sure I particularly need someone from a "credible training center" anymore because I don't need curve correction anymore.

Oh, I'm not afraid of surgery, but I don't want to always be having more and more surgeries, either. When you get into that groove you are always recovering, never back to normal. If another surgery is suggested I would want a targeted surgery that has a good chance of working and that the surgeon can convincingly explain why it will work. I'm going to have less trust and less faith that things will just work out than I did before. I don't have much faith that doctors can always find the causes of problems. I think a lot of the time they make guesses.


Well it's good to hear that your muscles can wither and you can still recover, even 9 months later, which is a long time. But people don't always recover from things like this. You were lucky. My problem controlling my legs is still intermittent, it is better sometimes, so that gives me some hope.

You put down so much information I hardly know how to answer you sometimes, Ed. Tiger Woods' case seems irrelevant. Though I greatly appreciate most of the information you post. And yours and everyone's encouragement.

I think that stenosis is usually painful because the movement of bone can irritate a nerve, and the pain can be fixed with fusion because it (fusion) stops movement. For some reason (unknown to me), stopping movement doesn't always resolve nerve pain.

--Linda

[Tina_R]

I think that stenosis is usually painful because the movement of bone can irritate a nerve, and the pain can be fixed with fusion because it (fusion) stops movement. For some reason (unknown to me), stopping movement doesn't always resolve nerve pain.

--Linda

But is fusion the best treatment for stenosis? Isn't it overkill? And not really targeting the stenosis, the fusion was for scoliosis.

[titaniumed]

You know, there are very few doctors trained at "credible training centers", one of those elite teaching hospitals or universities Linda listed. My surgeon is an alumnus of one of those. I look great, nice and straight, but I can't walk properly. I'm not so sure I particularly need someone from a "credible training center" anymore because I don't need curve correction anymore.

Oh, I'm not afraid of surgery, but I don't want to always be having more and more surgeries, either. When you get into that groove you are always recovering, never back to normal. If another surgery is suggested I would want a targeted surgery that has a good chance of working and that the surgeon can convincingly explain why it will work. I'm going to have less trust and less faith that things will just work out than I did before. I don't have much faith that doctors can always find the causes of problems. I think a lot of the time they make guesses.


Well it's good to hear that your muscles can wither and you can still recover, even 9 months later, which is a long time. But people don't always recover from things like this. You were lucky. My problem controlling my legs is still intermittent, it is better sometimes, so that gives me some hope.

You put down so much information I hardly know how to answer you sometimes, Ed. Tiger Woods' case seems irrelevant. Though I greatly appreciate most of the information you post. And yours and everyone's encouragement.

20-30 years ago there were not too many qualified scoliosis surgeons....and "if" you are going to do extreme spine surgery you really do want to have the best trained surgeon.... The thing is that sometimes problems happen. Spine is not easy and there are no guarantees. We have some difficult scoliosis cases around here, but the thing is that we have seen revision cases go back in and get their problems solved. (or at least some of them)

Diagnostics are helpful tools in finding problems but they are not always a guarantee that all problems will be found. My surgeon told me that many decisions will be made "after" they get in there. He told me I could be fused "as is" with no correction and he told me that something will go wrong and to be prepared. The definition of commitment. I had no choice because the pain was out of control.

You stated that you are fused down to L5. Chances are that you have cord or nerve root problems down low in the spine. Your L5-S1 was spared and not fused. Tiger Woods was basically out of commission because of this level....This is why I brought him up. He is also an example that laminectomies (non-fusion) are not guaranteed. It took 4 surgeries to get him back on the golf course.

The revision patients here are extremely brave people. It never ceases to amaze me that they are usually focused on the end goal. We are all afraid of initial surgery, then after we recover, go through that whole process and we know what to expect. I would imagine that we all become very brave. I was there on my neck. But you know I think it's basically ok to be afraid somewhat as there is no running into spine surgery and requires very careful thought. Timing with scoliosis is everything, having the right surgeon, and the right procedure.

My case is an amazing case...to come through as well as I did was not expected. My surgeon just shakes his head in disbelief.

I am the luckiest person on this forum

Let us know if they see anything.

Ed

[LindaRacine]

But is fusion the best treatment for stenosis? Isn't it overkill? And not really targeting the stenosis, the fusion was for scoliosis.

Unfortunately, I think it is. If movement isn't stopped, the pain isn't likely to dissipate. That's especially true in scoliosis. Decompression without fusion in the setting of an asymmetrical load (as in scoliosis) often ends in a worsening of the curve, and probably an escalation of pain.

[titaniumed]

I have attached a diagram below that shows what happens when we age. Stenosis or narrowing of the spinal cord and or nerves that exit the spine from the side. (look at the red areas) Osteoarthritis, bone overgrowth, bone spurs, disc herniation are some of the reasons why we have pain. Many adults with spine problems have osteoarthritis. (deterioration)

Just having one level like this is bad enough... some scoliosis patients have multiple levels like this. When you move, it exasperates and inflames the red areas....Sometimes I would have to do a full stop and go to bed. First choice methods would be an NSAID prescription to lower the inflammation,(Celebrex, Diclofenac etc) steroid shots, oral steroids (Medrol pack) and bed rest. Hot water therapy also helps.

Exercising or moving can really be especially painful when we are in this condition. If PT doesn't improve the situation in a "reasonable" amount of time, that's a sign for surgery.....been there, done that. A reasonable amount of time depends on how much pain one can handle. If surgery is done, all the red areas need to be turned back to yellow. Miss one of the problems in surgery, and pain will continue....Scoliosis curves take the diagram and complicate matters more because of the curve and also the twisting or rotation that happens in scoliosis. It's not easy dissecting adult scoliosis curves and addressing all the problems that can happen.

Solving the problems of radiculopathy and then fusing the joint stops all motion and the pain.

For anyone in this situation, (including non-scoliosis patients) I would etch this diagram in your mind to understand why most pains happen. You have to get rid of the red areas....just simply touching a nerve or cord with a light disc herniation or in any manner produces incredible neuropathic pains. Neuropathic meaning Central Nervous System which includes all the yellow in the diagram. (Focus on the nervous system)

Scoliosis and spine surgeons will usually have one of these diagrams up on the wall. (or back of door, that we look at for 3 seconds) It's the nuts and bolts diagram, and it's all about the yellow areas. (Radiculopathy lesson 101)

When I stood up in ICU the first time, I knew all my red problem areas were gone. Sciatica completely gone, all of it. All pain producers were addressed.

Tina, chances are you have some red areas....This pain will also affect gait. Just about any pain will affect gait. A headache will affect gait. Understanding why we have pain is important.

Ed

[titaniumed]

Find the disc herniation in the diagram. Disc herniations can herniate to the left or right of the spinal cord, they can also extrude into the spinal cord. If it herniates to the left side, chances are you will have pain on the left side of your body. Surgeons can tell which direction a herniation is by the patient's description of pain.

Disc herniations usually seem to herniate to the rear, in the direction of the spinal cord. When you bend forward, you essentially wedge your disc and force the herniation to the rear. Bending forward is not good for us.

For cervical patients I have mentioned joining a stargazers club and looking up at stars all night long. If we had more comets pass by the earth, there would be less neck problems. When I have trouble with my neck, I look up. When I lay in bed, I position on my side with the pillow adjusted "looking up"

Reading in bed is the opposite with pillow propping your head up forcing the disc to the rear. It's not a great idea reading in bed in this position.

Ed

[Tina_R]

Sorry about that. I don't know whether I picked it up from Ed's post, or made an assumption. It is fairly unusual to have severe neurologic symptoms without pain. Not that it lessens your issue, but I'm glad you don't have to deal with pain in addition to your problem.

I hope that your doctor can figure out the problem, and that it's not permanent.

--Linda

Thanks.
I probably have not been clear.
I do have pain, but it is all over my entire back. Really all over a wide swath of flesh. Stinging pain as if stung all over by wasps.
It's just that I'm not concerned with the pain. At least it's not my first concern. Not right now.

My first concern is that my walking will continue to deteriorate and I will be in a wheelchair. I can't think of anything worse.

There's such widespread pain I doubt it will help with any diagnosis for the walking problem. The pain won't won't pinpoint anything because it is all over.

From reading what other people have said on another website I am convinced the rods are causing my pain (as well as other weird sensations). A person there described what sounds like what I am feeling and says he finally got pain relief when he had his hardware removed years after his surgery. I guess rods just don't agree with some people.

[Tina_R]

Stenosis is a narrowing of any area of the body. The way to fix stenosis is to clear that area and make room.

The actual process of fusing the spine doesn't have anything to do with clearing an area.

Exactly, that's my point. We do have multiple skeletal problems as we age. If there's stenosis, shouldn't the "clear the area" surgery precede the fusion surgery?

Fusing immobilizes the joint by growing a solid bone mass. You can fuse the spine and still have stenosis. You can fuse the spine and completely cover all problems related to any sort of spinal stenosis (cord or nerve root) and still have pain caused by another problem. (Infection and Pseudarthrosis are examples)

Stenosis is just one of many problems that can happen to the spine.

Ed

"Fusing immobilizes the joint by growing a solid bone mass."
Here's another thing I have wondered. As the bone mass grows, does it grow nicely, or can it grow haphazardly, so that new bone can impinge on nerves where it didn't before?

[titaniumed]

If there's stenosis, shouldn't the "clear the area" surgery precede the fusion surgery?

Thats correct.

There are different procedures for doing this. Some are easier, and some can get quite involved.

For Spinal Cord Stenosis, Laminectomy procedures from the back, Discectomy procedures from the front. The disc is located in the front of the spine. It doesn't mean you can't remove it from the back. (or side) All different procedures with varying success rates and complication risks.

The Stenotic Spinal Nerves that exit the side of the spine also have different procedures. With large degenerated lumbar scoliosis curves, these also need to be addressed....

One thing that really helps in this regard is using a spacer or cage after a discectomy. It lift's the spine, it increases the disc space area thus creating more room for the nerve roots that exit the spine from the side. I have all oversized 13mm PEEK spacers that were installed from the front. I have over 2-1/2" of plastic in my lower spine and grew 4 inches after scoliosis surgery.

Ed

[titaniumed]

Here's another thing I have wondered. As the bone mass grows, does it grow nicely, or can it grow haphazardly, so that new bone can impinge on nerves where it didn't before?

Bone growth speed, and bone quality or integrity are things that we think about and of course the scientists at implant companies constantly think about this....because it's worth a LOT of money and saves repeated surgeries. They work on new synthetics so that allograft and or allograft doesn't have to be used in adults. I had no bone used on my surgeries. All synthetics.

One thing about bone is that it doesn't grow quickly. (In adults) I can't recall anyone saying that they found bone spurs on any revision surgeries. ??? Kids are totally different. They grow like weeds. They grow so fast you would think they would have green hair. They usually do not need any special items like BMP or bone pastes to help with fusion since they heal quicker.

What happens with our rods is that morselized bone chips are placed around the rods to facilitate osseointegration or bone growth. This is fusing from the back. Holding a spine still with hardware leads to the discs solidifying and eventually fusing from the front. When rods are removed after a long period of time, they have to chip all this bone away to get the rods out. I would imagine that if an area is infected, bone growth is hampered and this probably becomes easier. This would be a good question for a scoliosis revision surgeon....Usually rods are removed because of infection or a non-union. Jackie has done battle with this for a long time now.

When doing diagnostics for problems of any sort, it's nice to have a problem stand out. My 1" round gall stones were so large, a blind radiologist could see them with his cane. (Radiology humor...) If I were a doctor, I would have to put the Ray Charles glasses on and point to an x-ray with a cane at least once in my career....You don't see it? Thats ok, neither do I. (smiley face)

I hope somebody sees something....

Ed

[KathyInIowa]

Isn't it terrible when surgeries interfere with big events in your life.
Was your scoliosis entirely adult onset? You didn't have a trace of it before, or you just didn't realize it?
I think I had mine all my life but the curve increased very slowly if at all for a long time. It got bad when I approached 50, probably worsened by general deterioration of the skeleton from age. Then the curvature increased noticeably. Then I felt symptoms.

My case is similar to yours - I probably had a slight case when I was younger and it went undetected. I had "low back pain" for most of my adult life - starting in my early 20s but pretty tolerable. I just dealt with it. It did get worse as I got older, but it was all muscular pain that I could handle. There was nothing noticeable about my spine being slightly crooked. At some point around my early 40s, my rib hump appeared but I didn't know what it was. I went to a local orthoped and he said that was the "classic scoliosis hump - how long have you had that?" I had noticed about 4 months prior to that appointment. He did scoliosis xrays and my curve was around 24 degrees. He said that in adults it usually doesn't change much. But mine did, - my curve was getting about 2 degrees worse per year. By age 52 I was having all sorts of issues but was still fairly active so they weren't really treating me. By age 54 I was when it got really bad and I had surgery at age 55.

By the time of my surgery, my curve was around 32 degrees - so not really all THAT bad - but it was pain the drove me to surgery. I had everything on the list: rotted discs, the one half decent disc had ruptured, stenosis, nerve impingement....

I had a great outcome, all things considered. I still have residual "pains" that we all probably have - but they are very tolerable - nothing near what they were before surgery.

My surgery was at TCSC - so I felt that I was in good hands. I am going up next week for my 4-year follow up x-rays. Hopefully I will hear that my nothing has shifted and it all still looks good!!

Kathy

[titaniumed]

Kathy, I remember when you were done, but I had to go back and look at your x-rays in your first post. You had a mild S curve, but you had a decent sized spondylolisthesis (slippage) in your lower lumbar which looks quite painful....wow! I would guess that your surgeon didn't offer any alternative's for this....

I had a good spondy at mid back around T8 orT9 from a hard ski crash when I was around age 30. After a few Chiropractic adjustments and some time, it didn't show up on x-rays anymore, and was never seen again on x-ray. I have read that thoracic disc herniations usually happen from traumas. I must have really hit my ribs hard on that one. I skied on edge all the time and didn't crash much, but when I did, they were doozies and usually broke something. Either equipment or body.

Discovering your rib hump in your early 40's sure is late. (From the congenital, early onset, and idiopathic patient point of view)

Here is some material on Degenerative Scoliosis. This is a good review.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3192887/

================================================== ==============================

Kathy, I think there is a scoliosis surgical museum or Dr Moe exhibit at TCSC or somewhere in Minneapolis. Can you ask when you get there? Old scoliosis casts, Stryker frames, Metal braces, racks, screws, x-ray machinery, surgical tools, etc. That sort of thing.
I would be extremely interested in visiting...

I just discovered the Museum of Surgical Science Chicago....I didn't know this was there.
https://imss.org/plan-your-visit/#cost
https://imss.org/pain/


Glad you are doing well...

Ed