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slipsliding
03-31-2016, 11:46 PM
So I know very little about scoliosis since my docs just determined the pain I'm experiencing is from a curvature in my lower thoracic and upper lumbar spine ( 40 degrees.)

I've had MS for years. I'm used to MS, I know the pain patterns, I know what the different types of pain are and what triggers certain pain, I understand demyelination and CNS pain patterns.

This scoliosis pain has puzzled me because of the nature of the pain. I'm fine sitting, I'm fine lying down, but if I decide to get up and move around, I'm good for only about 10 minutes before the pain is really gripping, almost immobilizing, causing me to retreat to the bed, the chair, etc. where is seems to quickly resolve, especially if I slap a heat pack on it. Why is that? Seems to me if there's a curve in my spine, there's a curve in my spine...it's there when I'm sitting, or lying down, yet it only causes me pain if I'm vertical (I know I'm making a huge assumption that this is other folks pattern of pain, as well, so forgive me if I've got that all wrong.)

So what gives...what is the reason for what I would call "mechanical" pain...pain that appears when you're doing something in particular.

Thanks in advance for any info.

LindaRacine
04-01-2016, 12:47 AM
Curvature of the spine doesn't actually cause pain. If it did, everyone with scoliosis would have pain, and that's not the case. The pain that most people with scoliosis have is typically from degenerated discs, arthritis (causing stenosis), or muscle spasms.

rohrer01
04-01-2016, 04:58 AM
Welcome, Slipsliding!

I'm going to start off by asking how old you are and how long you've been having this different pain, please? I'm a 47y/o female.

I am one with scoliosis pain. I will partially agree with Linda and partially disagree with her, as she is a patient, too. She also works at a place with a boat load of spine specialists and has about as much knowledge of scoliosis as a person can have. However, there are people who have pain with their scoliosis and people who do not. I've looked it up on this website. They say that pain isn't necessarily related to curve magnitude. For example, there can be someone with an 80o curve that has no pain and someone with a 30o curve that has excruciating pain.

I have had pain since I was at least 8 years old or younger. When I look back at that pain I had then, I can honestly say it was muscular in nature because I could roll up in a ball on my right side every morning before getting out of bed and feel better. But, by the time I was 12 I had new pain where it felt like my bones in my upper back and neck hurt and I could feel my spine out of alignment (parents didn't believe me). I wasn't diagnosed with scoliosis until I was age 16 and had a major pain event which was muscle related because it hurt to breathe and I couldn't move my head. So I'm describing two types of pain here. The pain I had when I was 12 was analogous to a healing fracture in every vertebra of my neck and upper spine. I never realized this until I recently fell and broke a rib. For the first day it stung. But after that it ached. It still aches and can still hurt badly if I lean on it or if there is a weather change. This is what my vertebrae feel like. So I would say that is bone pain. I didn't have arthritis when I was 12. They told me at 16 that the pain I was having was "arthritic in nature". They didn't say I had arthritis. I was diagnosed with very mild arthritis in my neck at age 29. They say I still have mild arthritis in my neck, but blah! I have MRI's on my thread "I have some imaging CDs" that you are welcome to look at and see the progression of my arthritis in my neck. It's very noticeable. The point is, I was having the broken bone pain before the arthritis. Don't get me wrong, the arthritis adds nothing but more pain, making Linda's statement true for a lot of people, just not me when I was a child.

I have a rare, undiagnosed neuromuscular disease "likely" in the Charcot Marie-Tooth family (some unexplainable mutations on that gene) that didn't get bad enough to diagnose until I was about 45 when I suddenly in ONE day had a very hard time walking along with upper body weakness. I will call it MD to make it easier since the Muscular Dystrophy Association has changed the "D" from meaning dystrophy to the "D" meaning disease. I have cervical dystonia as part of it. So I also suffer from nerve pain and muscle pain and can feel the different kinds of pain. They feel very different than bone pain. But, depending on your age and whether or not you suffer from childhood arthritis, you may have bone pain due to scoliosis or due to degeneration as Linda suggested.

So for me, I used to feel better once I got up and around (muscle pain). These days I hurt worse when I get up and around, pain from degeneration. So I lounge where I can rest my neck and my lower back (DDD at L5/S1 and SI arthritis). So my doctor prescribed me a semi-hard neck brace that I can wear when my muscles are too weak from Botox therapy I get for my dystonia or when my bones just hurt and need the stress off of them.

So, you know all about me and the different kinds of pain I have. With that said, I can relate to what limited information you have given. If your pain is new, thus driving you to seek medical care and receive x-rays, my guess is that it's probably degenerative in nature if you are SURE it's not muscular in nature. You have to remember that all of your muscles, tendons, ligaments, and yes, sometimes nerves all get pulled on in directions that they aren't meant to go. So my answer isn't as simple as saying spinal deformity in and of itself doesn't hurt. It's never in-and-of itself and for that reason I can't explain why everyone doesn't experience pain. Maybe it's the curve type or how loose or tight the muscles, tendons, and ligaments are. But as we both know, anything that's innervated can hurt if the nerves are messed with. It's just what kind of nerve and what signal it sends to the brain.

Phew!


So, again, welcome and sorry for the very long post!
Rohrer01

burdle
04-01-2016, 05:42 AM
Curvature of the spine doesn't actually cause pain. If it did, everyone with scoliosis would have pain, and that's not the case. The pain that most people with scoliosis have is typically from degenerated discs, arthritis (causing stenosis), or muscle spasms.

This post puts us scoliosis sufferers back years of fighting with the non-informed community ( medical and non-medical). Scoliosis DOES cause pain. Just because some people do not have pain with their scoliosis does not prove the assertion. Yes degeneration will oftern exacerbate the pain but it is simply not true and not helpful to say that Scoliosis does not cause pain - rather better to say that 'Not all scoliosis curves cause pain'

Ordinarily it would not matter - it would be just a matter of semantics and not logical BUT Scoliosis is so non uniformly supported in the medical and complementary care community- in that there is no defined treatment path that non-scoliosis specialist follow. Often there is a complete lack of care due to the fallacy that 'it doesn't cause pain'. It is So difficult to get GPs and orthopaedic docs to get up to speed with scoliosis that I just boil when I read a comment like this in isolation- it does so much damage to us sufferers.

Pooka1
04-01-2016, 07:40 AM
Here is a thread referencing a comment from Dr. Hey and a study on pain in AIS.

http://www.scoliosis.org/forum/showthread.php?10531-Hey-says-studies-confirm-pain-w-scoliosis-in-kids&highlight=

jackieg412
04-01-2016, 09:06 AM
I think the great thing about children is they don't focus on pain. They are so busy playing and moving they just think what next. So I don't know if we really can say there isn't pain it is just not important to them. I can say that I didn't feel any real pain until my 20's. But I ignored it and went on with family life. X-rays show the scoliosis. I had pain events but handled it. After an accident in my 50's I no longer handled it. I am sure there was many reasons for more pain. Including the accident.

slipsliding
04-01-2016, 12:19 PM
Thanks for all the replies.

I can understand that there's a difference between the "haves" and "have nots" in regard to pain. For years doctors believed MS did not cause pain. Now they know differently, but there are some MS patients that do and some that don't have pain. The debate is if the pain is MS, or the result of the MS. I side with the "result of MS" group. After all, it's not the lesions in the brain or the spinal cord that hurt, but it's what those lesions affect, i.e. spasticity for instance, that causes the pain. I have a lesion in my brainstem that causes pain in my face and tongue, but my brainstem doesn't hurt, the "sclerosis" (scar) in the brainstem is not painful, but the result of that brainstem lesion is painful.

Anyhow, to answer questions:

I'm 63.

This pain is new as of last October. That's when I started complaining about it. It had been there in a vague sense for a long time, but got my attention in October. I have a Baclofen pump for my spasticity so at first I thought it might be that, when we turned up the pump, no relief. Then one of my physiatrists thought maybe the pump was too high making my torso weak, and overusing muscles to compensate, so they turned the dosage down on the pump...no help.

The pain feels muscular, my torso evidently thinks my right shoulder should touch my right hip while this is happening :) But the pain is on the left
side, from my ribs to my hip (and they did say the scoliosis was from T10 to L3, and that's consistent with the pain which feels crampy/charlie horse type. At first I thought it was some sort of dystonia, but the neuro docs said no. They even did an EMG tosee if it was a peripheral nerve problem, thinking I might have impingement of a nerve...no issues with the EMG.

And as I said, in my first post, months into this, after multiple sessions of PT hadn't touched it, they did x-rays. I have MRIs in May every year to
check up on my MS, and they check brain, C and T spine, and everything seemed fine last MRI. My physiatrist told me that MRIs aren't always the
best at picking up scoliosis, that's why she ordered a scoliosis panel of x-rays.

I think the pain is muscular since it tends to ease rather quickly with a change of position and a heating pad.

As I said, the two theories as to cause of the curvature:

1. I've bent to the right for so long to maintain my balance, that the spine curved that way.

2. Theory number two is a problem I already deal with with my neck muscles, minus the pain. My head turns partially to the right for the most part, and if I'm not careful and paying attention, my head will rest on my right shoulder....it's my head's "go to" position. But the reason this happens is there is much atrophy in the muscles on the left side of my neck and head/face (crooked smile, speech impediment, etc) and the strong muscles on the right side of my neck win in the battle for head position and pull it to the right, but there is no pain with this. That is the idea of what might be happening with my curvature. My right side torso muscles are strong, my left side torso muscles are weak from atrophy, so maybe the strong ones on the right are winning in the battle to hold my body upright, pulling me hard to the right, causes left sided pain in the muscles and my spine has gone along for the ride and is curving that way.

These are the theories put forth by the physiatrist, and neuro. I've never consulted with an orthopedic doc because I can't have surgery due to the pump catheter in my spine.

So that's my story. Do any of those theories make sense to you seasoned scoliosis folk? Like I said, I'm late to the "party" and know very little.
Plus I've not had a lot of time to dig into the research on the internet. I did see the term "neuromuscular scoliosis" in one foray to find info,
and it referenced scoliosis caused by neuro diseases, but I couldn't find much more than that. That's why I headed for a forum, I thought I'd take advantage of your combined knowledge and experiences.

jasero
04-01-2016, 01:04 PM
I sometime check this forum but never thought I would hear of someone with my double whammy. I also cope with ms & scoliosis, but my scoliosis definitely causes me more difficulties than my ms. I feel I am very fortunate that I have not been progressing & the ms is not as much an issue for me. I am now 62 yrs & have never encountered anyone with my physical limitations. I would welcome an acquaintance to share some encountered difficulties. Aside from pain causing many limitations in life, my most concerning problem has been lack of exercise, as that makes my condition so much worse. Being alone in this cuts down on my motivation, when I attempt group activities, I always leave feeling very frustrated with my
conditions & this greatly harms my self esteem. Working out alone, flat on my back is sooo boring! I'm so tired of seeing pt's & drs discouraging attitudes in regards to what to advise me & being treated as beyond help. Of course, my attitude has deteriorated after so many years & now battling aging issues.
Regarding pain, I have experienced increasing pain since my late twenties.
I was diagnosed with ms over 25 yrs ago & suffered 2 primarily sensory exacerbations that left me somewhat disabled, but I was diagnosed with scoliosis almost 50 yrs ago & have a thoracic curve of about 63 & lumbar of about 40. I wore a Milwaukee brace after seeing a specialist at Columbia Hospital in NYC for two years at the difficult age of 15 which was the beginning of the lowering of my self esteem & isolation.
Surgery is not an option as I also have bone density issues.
Just thought I would reach out to see if there is anyone in my area to share ideas. There are so many ms counseling groups, but never any for scoliosis. I do try not to complain much, but this forum site seems like the most appropriate place for airing my frustrations.
Thanks for reading

susancook
04-01-2016, 02:39 PM
Curvature of the spine doesn't actually cause pain. If it did, everyone with scoliosis would have pain, and that's not the case. The pain that most people with scoliosis have is typically from degenerated discs, arthritis (causing stenosis), or muscle spasms.

Linda, what causes the muscle spasms? Is it from the curvature puling on the muscles?
Susan

slipsliding
04-01-2016, 08:19 PM
I sometime check this forum but never thought I would hear of someone with my double whammy. I also cope with ms & scoliosis, but my scoliosis definitely causes me more difficulties than my ms. I feel I am very fortunate that I have not been progressing & the ms is not as much an issue for me. I am now 62 yrs & have never encountered anyone with my physical limitations. I would welcome an acquaintance to share some encountered difficulties. Aside from pain causing many limitations in life, my most concerning problem has been lack of exercise, as that makes my condition so much worse. Being alone in this cuts down on my motivation, when I attempt group activities, I always leave feeling very frustrated with my
conditions & this greatly harms my self esteem. Working out alone, flat on my back is sooo boring! I'm so tired of seeing pt's & drs discouraging attitudes in regards to what to advise me & being treated as beyond help. Of course, my attitude has deteriorated after so many years & now battling aging issues.
Regarding pain, I have experienced increasing pain since my late twenties.
I was diagnosed with ms over 25 yrs ago & suffered 2 primarily sensory exacerbations that left me somewhat disabled, but I was diagnosed with scoliosis almost 50 yrs ago & have a thoracic curve of about 63 & lumbar of about 40. I wore a Milwaukee brace after seeing a specialist at Columbia Hospital in NYC for two years at the difficult age of 15 which was the beginning of the lowering of my self esteem & isolation.
Surgery is not an option as I also have bone density issues.
Just thought I would reach out to see if there is anyone in my area to share ideas. There are so many ms counseling groups, but never any for scoliosis. I do try not to complain much, but this forum site seems like the most appropriate place for airing my frustrations.
Thanks for reading

Hi Jasero,

Glad I can be your "double whammy" mate.

My MS showed up about 20 years ago. I used Interferon for years, but a few years ago I was moved to the Secondary Progressive type, so no more shots. As far as MS goes, mine has had a pretty normal course. Relapses and remittance for years, and now I'm just in a steady downward decline, but it's slow. My "new normal" is constantly changing. And I thought I had it figured out: what symptomatic med to use when, when to rest, how far to exert myself before fatigue set in, what mobility aid (cane or wheelchair) to use when. Then this new pain and scoliosis posture, and I'm once again adjusting my parameters .

Sounds like your scoliosis has given you a rough ride. I too deal with some of the same challenges with exercise. I go to a PT but I have a lot of restrictions, due to my pump, as far as angle I can bend or not bend, the amount I can twist, etc. I'm mostly reduced to stretches on the bed. I count as exercise the things I do around the house. I have to do them in spurts, but I'm still up and using muscles for things like, folding clothes, putting dishes in the dishwasher or unloading it, getting food and water for the pets, cooking dinner, etc.

I do work full time, but it's all web based from a laptop while I sit or recline.

The situation about social events has been a plague for me too. Mostly my social calendar is full of dr visits . If we're asked to a party, or get together, I usually attempt to go, and if I have to leave early, I leave early. I will admit there are times I send my regrets because it just might be a day that I don't have the wherewithall to shower and get dressed, much less go to a social event and pretend to be having a good time. But sometimes a burst of energy comes from somewhere (possibly the 3 cups of coffee I just drank) and my MS behaves and I really enjoy the outing. So I just keep trying.

As far as support groups, don't you think they're a mixed bag. I mostly do online forums, I find them much more concise and informational. If you're like me you get invitations to the free lunches from the pharmaceuticals. companies, they're a joke. I mostly cultivate MS friends online. I agree there aren't as many online scoliosis forums as there are MS forums. However, this forum seems very vibrant and friendly.

Let's keep in touch.

LindaRacine
04-02-2016, 12:25 AM
Linda, what causes the muscle spasms? Is it from the curvature puling on the muscles?
Susan

I think there are probably a myriad of reasons that we have back pain. Muscle strain is definitely one of them.

LindaRacine
04-02-2016, 01:15 AM
This post puts us scoliosis sufferers back years of fighting with the non-informed community ( medical and non-medical). Scoliosis DOES cause pain. Just because some people do not have pain with their scoliosis does not prove the assertion. Yes degeneration will oftern exacerbate the pain but it is simply not true and not helpful to say that Scoliosis does not cause pain - rather better to say that 'Not all scoliosis curves cause pain'

Ordinarily it would not matter - it would be just a matter of semantics and not logical BUT Scoliosis is so non uniformly supported in the medical and complementary care community- in that there is no defined treatment path that non-scoliosis specialist follow. Often there is a complete lack of care due to the fallacy that 'it doesn't cause pain'. It is So difficult to get GPs and orthopaedic docs to get up to speed with scoliosis that I just boil when I read a comment like this in isolation- it does so much damage to us sufferers.
EVERY time this topic comes up, it's the same debate. I AM NOT SAYING YOU DON'T HAVE PAIN. I am saying that curvature of the spine, in and of itself, does not cause pain. Pain comes from all sorts of different sources. It seems to me that people with scoliosis would have a higher probability of pain, because of the asymmetric loading of the discs. Research, however, has not shown that.

Hopefully, some of the scientists in the group can help me out here. Is it not true that if there are people with large scoliosis curves who do not have pain (and I can attest to this being true), that it can be said that scoliosis does not cause pain? Do people think that those who don't have pain are lying?

Somewhere between 80-85% of adults have back pain at least occasionally. The percentage is about the same in adults with scoliosis, regardless of curve magnitude. I actually think people with scoliosis are generally much more stoic about their pain than the general public. Radiographically, adults with scoliosis typically have at least 4 or 5 issues that would be valid reasons to justify surgery. We see patients without scoliosis every day, with a single level that's barely abnormal, who claim that they have 10 out of 10 pain.

Please, please, understand. I am not trying to undermine anyone's claims of pain. I'm certain you have pain. The pain that you have is caused by changes in your vertebrae and intervertebral discs, by muscle inflammation, and by asymmetric loading of your spine. (This is actually a bit of an over-simplication, as scientists are beginning to discover that there may be differences in our spines on a cellular level.) Nonetheless, the percentage of people with scoliosis who claim to have no pain, is about the same as people without scoliosis.

If you are super sensitive about hearing someone say that scoliosis doesn't cause pain, you might want to look at your family and friends and wonder why they choose not to believe that you have pain. If someone tells you that you must be faking your pain because "scoliosis doesn't cause pain", you need to understand that they don't have a clue about science and reason. You can't change the fact that you have scoliosis, but they're choosing to be uneducated.

--Linda

rohrer01
04-02-2016, 02:26 AM
Thanks for all the replies.

I can understand that there's a difference between the "haves" and "have nots" in regard to pain. For years doctors believed MS did not cause pain. Now they know differently, but there are some MS patients that do and some that don't have pain. The debate is if the pain is MS, or the result of the MS. I side with the "result of MS" group. After all, it's not the lesions in the brain or the spinal cord that hurt, but it's what those lesions affect, i.e. spasticity for instance, that causes the pain. I have a lesion in my brainstem that causes pain in my face and tongue, but my brainstem doesn't hurt, the "sclerosis" (scar) in the brainstem is not painful, but the result of that brainstem lesion is painful.

Anyhow, to answer questions:

I'm 63.

This pain is new as of last October. That's when I started complaining about it. It had been there in a vague sense for a long time, but got my attention in October. I have a Baclofen pump for my spasticity so at first I thought it might be that, when we turned up the pump, no relief. Then one of my physiatrists thought maybe the pump was too high making my torso weak, and overusing muscles to compensate, so they turned the dosage down on the pump...no help.

The pain feels muscular, my torso evidently thinks my right shoulder should touch my right hip while this is happening :) But the pain is on the left
side, from my ribs to my hip (and they did say the scoliosis was from T10 to L3, and that's consistent with the pain which feels crampy/charlie horse type. At first I thought it was some sort of dystonia, but the neuro docs said no. They even did an EMG tosee if it was a peripheral nerve problem, thinking I might have impingement of a nerve...no issues with the EMG.

And as I said, in my first post, months into this, after multiple sessions of PT hadn't touched it, they did x-rays. I have MRIs in May every year to
check up on my MS, and they check brain, C and T spine, and everything seemed fine last MRI. My physiatrist told me that MRIs aren't always the
best at picking up scoliosis, that's why she ordered a scoliosis panel of x-rays.

I think the pain is muscular since it tends to ease rather quickly with a change of position and a heating pad.

As I said, the two theories as to cause of the curvature:

1. I've bent to the right for so long to maintain my balance, that the spine curved that way.

2. Theory number two is a problem I already deal with with my neck muscles, minus the pain. My head turns partially to the right for the most part, and if I'm not careful and paying attention, my head will rest on my right shoulder....it's my head's "go to" position. But the reason this happens is there is much atrophy in the muscles on the left side of my neck and head/face (crooked smile, speech impediment, etc) and the strong muscles on the right side of my neck win in the battle for head position and pull it to the right, but there is no pain with this. That is the idea of what might be happening with my curvature. My right side torso muscles are strong, my left side torso muscles are weak from atrophy, so maybe the strong ones on the right are winning in the battle to hold my body upright, pulling me hard to the right, causes left sided pain in the muscles and my spine has gone along for the ride and is curving that way.

These are the theories put forth by the physiatrist, and neuro. I've never consulted with an orthopedic doc because I can't have surgery due to the pump catheter in my spine.

So that's my story. Do any of those theories make sense to you seasoned scoliosis folk? Like I said, I'm late to the "party" and know very little.
Plus I've not had a lot of time to dig into the research on the internet. I did see the term "neuromuscular scoliosis" in one foray to find info,
and it referenced scoliosis caused by neuro diseases, but I couldn't find much more than that. That's why I headed for a forum, I thought I'd take advantage of your combined knowledge and experiences.

I've told you about all I can with my own experience. I don't know for sure which exterior muscle groups are being affected other than my limbs. I know I recently started having progression in a compensatory curve that has a right sided apex. So my shoulder girdle and neck have a left apex. It seems that the apices cause pain due to stretching of the muscles, tendons and nerves. That's my best guess. My right side has recently started hurting. But, like I explained in my very long post, there are several different types of pain associated with scoliosis...at least on me.

For those of you who think that Linda is saying that scoliosis in and of itself doesn't cause pain, she's right. Not EVERYONE with scoliosis has pain. But those people may not have other problems that are aggravated by their scoliosis. I think some of the bone pain I have is from the vertebrae being pulled on by the strong muscle spasms caused by my MD.

Remember that every case is unique. Not everyone has the same cause for their scoliosis. I thought mine was AIS until I was diagnosed with some unknown muscle disease and cervical dystonia. That explains a LOT. It's probably the cause of my scoliosis, which would explain the pain.

Slipsliding, at your age you probably have a combination of arthritic degeneration and progression. Weak muscles can certainly cause pain if they can't hold your ribs like they should. Overstretching any muscle hurts!

Rohrer

LindaRacine
04-02-2016, 01:29 PM
How about saying "scoliosis can cause pain"? I think that's absolutely true.

--Linda

titaniumed
04-02-2016, 03:16 PM
My neighbor has no scoliosis, a single level lumbar fusion was done and he is in major pain, takes a multitude of medications per day, had a pain pump which he didn’t like it so it was pulled out, and he has 2 screws. He is on disability.

He looks at my x-ray and cannot believe it.....and I am mostly pain free other than the occasional thoracic bear traps which I don’t consider pain....I just lay down and take a nap. I do go to work everyday.

One of our vendors has a 100 plus degree OMG “high” kyphosis, (set bowling ball behind his head and it wont roll off), is 39, and has no pain at all. His neck is at 90 and is so bad, you don’t need x-rays. He saw Dr Gupta at Davis 15 years ago, and since he has no pain, nothing was done. He takes no meds. His plumb is excellent which is incredible.

I just cant believe he has no pain....and I do ask him on a regular basis. He also doesn’t have “the look” of pain, so he isn’t lying.

I can imagine his x-rays will shake a few heads...

I have never met a scoli with large 70 plus curves to be pain free.....I’m sure they are out there, but never met one.

Ed

Pooka1
04-02-2016, 05:04 PM
Is it not true that if there are people with large scoliosis curves who do not have pain (and I can attest to this being true), that it can be said that scoliosis does not cause pain? Do people think that those who don't have pain are lying?

This question rides a knife edge of sematics in my opinion.

I think the issue is that bone simply being out of alignment does not necessarily cause pain. The proof is the people with curves large and small with no pain. It is only when the misalignment causes disc problems or stenosis or something ELSE that triggers pain. Because these same disc problems and stenosis occur in perfectly straight spines, you can't even say the scoliosis definitely caused those issues. So then it comes down to a game of numbers and percentages in prevalences and incidences of these issues in people with and without scoliosis to decide if the curve contributes over and above to painful conditions that the general public experiences with straight spines. See next question.


Somewhere between 80-85% of adults have back pain at least occasionally. The percentage is about the same in adults with scoliosis, regardless of curve magnitude. I actually think people with scoliosis are generally much more stoic about their pain than the general public. Radiographically, adults with scoliosis typically have at least 4 or 5 issues that would be valid reasons to justify surgery. We see patients without scoliosis every day, with a single level that's barely abnormal, who claim that they have 10 out of 10 pain.

The stat I have seen is that at least 85% of adults will experience back pain in their lifetime that is bad enough to drive them to see a doctor. I am in that category... I ruptured a disc twice, the first time when I was about 30 yo and I don't have scoliosis. I was debilitated until the disc healed. The second time it happened I was again debilitated but kept riding for another 1.5 years until I realized it would not heal until I stepped off which I did for 3 months. It healed. Stepping off my horse and putting him in training with someone else for 3 months may not sound serious in the scheme of things but to put it in perspective, I have never been off my horse for longer than I have been on a 10 day vacation previously. And I have never had to step off for a back problem. (The first time I herniated the disc I had been out of sport for about a year but feel the foundation for the injury happened while riding before I stopped.)

Anyway, unless the percentage of people with scoliosis and back pain is measurably greater than ~85%, we cannot know the curve alone is what has caused the disc pain or stenosis given the high amount of these things in the general population.

Now if someone told me ~100% of people with scoliosis will get back pain eventually if they are not fused straighter, I would believe it and agree it was a higher percentage than the general population. If that is the case then we can say the curve over time will trigger disc pain or stenosis OVER AND ABOVE that seen in the general population. Actually, Dr. Hey seems to be saying something like this in arguing for correcting curves... avoiding future damage from simply having a curve over the years. This, by the way, is rarely mentioned to parents and children where the ENTIRE focus is on being below a surgical angular threshold at skeletal maturity. Well if some/most/all of these kids who never make it to frank surgical range (>50*) at the point of skeletal maturity still have pain triggered by the misalignment over time then a miss is as good as a mile and they may not be avoiding surgery after all despite "successful" bracing.

So I think both Burdle and Linda are simultaneously correct within the limits of sematics and the written word.

titaniumed
04-02-2016, 11:48 PM
This scoliosis pain has puzzled me because of the nature of the pain. I'm fine sitting, I'm fine lying down, but if I decide to get up and move around, I'm good for only about 10 minutes before the pain is really gripping, almost immobilizing, causing me to retreat to the bed, the chair, etc. where is seems to quickly resolve, especially if I slap a heat pack on it. Why is that?

Slip, I don’t know if there is an answer for this question or if you can even blame scoliosis? MS changes everything.....Neuro diseases are far from being simple.

You say that the heat pack resolves your pain quickly.....I used hot soaks with 106 degree F water for pain, before and after surgery, it works quite well on bone and nerve pain. My scoliosis and surgical recovery was all about staying “as comfortable as I could, as long as I could”. If your pain comes after 10 minutes of standing, can you reduce to 5 minutes and see what the effect is? Do you actually notice a triggering of pain immediately upon standing? What is the time threshold, and is it linear? In other words, can you get up and walk around for 5 minutes, and be ok as far as pain is concerned?

I cant comment on it being a “mechanical”.....Its funny how pain is triggered and how it lingers. You can do physical spine damage and the resulting pain can take many days to take a foothold, (I have had this happen) or if a nerve is inflamed, can take a really long time for the pain to turn off....or switch off like a light switch. (I have had this happen) Or you can hit your hand with a hammer for immediate pain. (I have had this happen) I wonder what Richard Pryor would think? He had MS. Of course our situations do require comedic effort to keep our sanity intact......Do try to keep smiling Ok?

Jasero, welcome to the forum....

We appreciate your posts....

You guys, hang in there

Ed

slipsliding
04-03-2016, 12:32 AM
For those of you who think that Linda is saying that scoliosis in and of itself doesn't cause pain, she's right. Not EVERYONE with scoliosis has pain. But those people may not have other problems that are aggravated by their scoliosis. I think some of the bone pain I have is from the vertebrae being pulled on by the strong muscle spasms caused by my MD.

Remember that every case is unique. Not everyone has the same cause for their scoliosis. I thought mine was AIS until I was diagnosed with some unknown muscle disease and cervical dystonia. That explains a LOT. It's probably the cause of my scoliosis, which would explain the pain.

Slipsliding, at your age you probably have a combination of arthritic degeneration and progression. Weak muscles can certainly cause pain if they can't hold your ribs like they should. Overstretching any muscle hurts!

Rohrer

Hi Rohrer,

I know you mentioned MD as a culprit in muscle spasms. I wanted to pass on that I did do a little more research into what the Scoliosis information sites
called Neuromuscular Scoliosis. You might find the articles about this interesting, seeing you have the MD connection. Their explanation was that neuromuscular disease, like MD, can lead to weakening of the muscles, which in turn contributes to the scoliosis. Once again, I feel like an extreme
layman when reading the articles, so I may be misinterpreting what's being communicated, but I did find it interesting.

rohrer01
04-03-2016, 04:21 AM
Slipsliding,

Can you share the link to the article that you read? I actually have a plethora of symptoms. I have a lot of myotonic and dystonic muscles, both of which cause muscle spasms, but in different ways. I don't have a typical muscular "dystrophy". I've had one muscle biopsy that showed no actual dystrophy. I have just about all of the symptoms of one or the other of the family of Myotonic Muscular Dystrophy. My neurologist was 80% convinced that I had Myotonic Muscular Dystrophy. He did an EMG that didn't show any typical "dive-bomber" sounds that come with MMD and then referred me to a geneticist. She did her own physical exam and came up with the same primary suspicion. But she also tested me for the Charcot Marie-Tooth (CMT) subsets of diseases as kind of a shot in the dark. My tests revealed that I am a carrier for a recessive form of one of the less dangerous forms of CMT and a mutation on a dominant form of the disease which is one of, if not the most severe and life-threatening form of CMT. The odd thing is, they can't "diagnose" me with (CMT) because this mutation that they found is not known to cause disease in "other species".

There is no known information about this mutation in humans and for sure no known information about this mutation in combination with the other known mutation that makes me a carrier for the lesser form of CMT. So there needs to be some research into these mutations together. I am planning on going back to school and making this my thesis for my Master's degree in Cell and Molecular Biology. But I'm not sure I can do it. I know how rigorous college is and I am rapidly losing my ability to walk and am also prone to falls that always send me backward. I got a pretty nasty concussion in October 2014 that I'm still recovering from the cognitive deficits it caused. I've been hurt pretty badly from some of these falls. Just a little under eight months ago I fell and broke a rib. My walker isn't protective against these falls. When my body decides it wants to fall, I can be in any position. I really need a scooter with a head rest in order to be fully protected. There is a LOT of walking involved in going back to school so the scooter is in order! I will say that I've never fallen in a complete sitting position. The broken rib incident I was sitting on my bike that I can no longer ride and just flipped off of it for no apparent reason.

So here's the scoop on myotonic muscles. They make dive-bomber noises on EMG, which my neurologist couldn't find. My physiatrist has found one or two in certain muscles using a needle EMG under my shoulder blades that make the noise. However, my genetic tests were negative for both known types of MMD. Myotonia cause a muscle that is being used to contract more than needed and it takes a loooong time for the muscle to release. It's like when I would play on the monkey bars as a kid and when I got down it took awhile before I could straighten my fingers. My sister (also affected) and I thought it was a pretty cool thing when we were little. It was a "trick" we could do that no one else could do.

With dystonic muscles, the muscles spasm and contract uninvited. By that, I mean you don't have to actively be using it unlike the muscles that are myotonic. Also, with dystonia, the muscles can twitch and spasm, so many cervical dystonia patients can't hold their heads still. I, fortunately, had only a small tic that my physiatrist never saw and is gone now because of the Botox treatments.

Another thing that happens to me is that I get random stabbing pains that are like a 9 on the pain scale. But they only last about a second. But the stabbing jolts can go on for up to an hour at a time. I can't take pain pills for them because I don't know how long the episode will last. It's like a stab that immediately goes away after about a second, then a second or two later I'm jabbed again. The most common places for these are on the tops of my feet (usually the right foot) and my legs. They have happened in my hands, arms, and let's say for politeness unmentionable places. I don't know if it's related to the dystonia or not because I get muscle spasms (Charlie horses) and/or uncontrollable twitching in these places as well.

But, I also have marked weakness of my limbs. I don't know about my hands because no one's told me. I do the grip test and am never told the results, although I can feel hand weakness when I try to hold on to stuff, like grocery sacks (I've dropped a few). My leg weakness and arm weakness are almost embarrassing because I can't fight the resistance at all. It used to be just my left leg, but is now in both legs.

It's my opinion that the cervical dystonia started at a very young age and is the main contributor of my scoliosis. My primary curve is so high in the thoracic area that it involves my neck. Check out my thread I directed you to earlier in this discussion if you want to see my x-rays and MRIs. My scoliosis is and always has been painful. I assumed when I was diagnosed with scoliosis that everyone else's hurt, too. Most of the doctors I saw as a young person told me that scoliosis doesn't hurt. It angered and scared me at the time because one doctor told me that my pain was, and I quote, "arthritic in nature". He never came out and said I had arthritis, but at 16 that's what it made me think. They gave me some kind of NSAID and sent me on my way until the next three months.

So, I'm sure that this more than answered your inquiry about weak muscles vs. strong muscles contributing to my scoliosis.

Have a good day and don't forget to post a link to that article if you can.
Rohrer01

slipsliding
04-03-2016, 08:37 AM
Slip, I don’t know if there is an answer for this question or if you can even blame scoliosis? MS changes everything.....Neuro diseases are far from being simple.

You say that the heat pack resolves your pain quickly.....I used hot soaks with 106 degree F water for pain, before and after surgery, it works quite well on bone and nerve pain. My scoliosis and surgical recovery was all about staying “as comfortable as I could, as long as I could”. If your pain comes after 10 minutes of standing, can you reduce to 5 minutes and see what the effect is? Do you actually notice a triggering of pain immediately upon standing? What is the time threshold, and is it linear? In other words, can you get up and walk around for 5 minutes, and be ok as far as pain is concerned?

I cant comment on it being a “mechanical”.....Its funny how pain is triggered and how it lingers. You can do physical spine damage and the resulting pain can take many days to take a foothold, (I have had this happen) or if a nerve is inflamed, can take a really long time for the pain to turn off....or switch off like a light switch. (I have had this happen) Or you can hit your hand with a hammer for immediate pain. (I have had this happen) I wonder what Richard Pryor would think? He had MS. Of course our situations do require comedic effort to keep our sanity intact......Do try to keep smiling Ok?


Ed

Hi Ed,

Thanks for the insight. Yep, MS is such a strange disease and it's hard to assume or predict anything that happens. There's a study online called More than Meets the Eye and they actually did MRIs of an MS patient every 2 weeks for a year, then they time lapsed the MRIs. It's amazing to see all that was going on
in the patients brain, and yet, he reported no symptoms or relapses. So to predict anything is absurd. (here's the link to the article...not sure i links are allowed on this site: http://www.msdiscovery.org/news/news_synthesis/322-more-meets-eye )

I will say this about the nature of the pain. I usually use a cane when I walk. I use it for stability, for balance, to give me more support because of my weak leg and to enhance my proprioception. And I use it in a certain way. I hold it in my right hand and since my left leg is the weak one, I put the cane down at the same time I'm beginning to put weight on the left leg. Well, this pain that does come within minutes of getting up and walking (the 10 minute time period is the time I have before I have to give up and get myself back in a "down" position) can be alleviated somewhat if I change my cane dynamics.

I still keep my cane in my right hand but I tuck my elbow, keep the cane close to my body, and use it more as a device to force my right shoulder up and in a different position than it usually is (my body leans and my right shoulder is noticeably dropped. By forcing that right shoulder back into a more normal position, I can stave off the pain (which is on the left side.). It's an awkward way to walk, and my gait is shortened, but since it usually means diminished pain, I do it. That's why I have hope for that Aspen brace the PT is proposing. The brace appears to keep your torso straight and it will be interesting to see if it changes the shoulder position . So I'm anxious to see i it'll work.

As far as keeping our sanity...I find humor is a huge relief. And "keep on smiling" in the MS community (or in any disease that causes demyelination) is spelled "keep smyelin." :)

slipsliding
04-03-2016, 08:54 AM
Slipsliding,

Can you share the link to the article that you read?
Rohrer01

Hi Rorher,

I found quite a few links to articles when I googled Neuromuscular Scoliosis. Here's one that mentioned MD.

http://emedicine.medscape.com/article/1266097-overview#a7

burdle
04-03-2016, 11:16 AM
How about saying "scoliosis can cause pain"? I think that's absolutely true.

--Linda

That's what you should have said! It is simply not logical to conclude that scoliosis does not cause pain just because you have some people with scoliosis who do not experience pain . You can only conclude the opposite . My post was nothing about discussing if people are in pain from muscles or discs which of course a lot are .

We do not know enough about pain and noiceptors to know why some experience enough pain for it to be a problem and others do not