Scoliosis Gym

[susancook]

Once you get to your 50s surgeons are less keen to do surgery. They prefer to try to address the pain without surgical intervention.

This might have been your experience, but my Adult Degenerative Scoliosis with a large kyphosis was discovered at age 63. I was "offered" the option of surgery shortly thereafter, but I continued to do PT, acupuncture, meds, procedures, etc hoping to avoid surgery. I continued to followup with the spine surgeon and finally agreed that surgery was my best option at 65 when I could only walk 1/2 block because of pain. My curve was 25/36 and my kyphosis was about 90 as I remember.
I asked the 2 spine surgeons that I consulted with if they thought that I should consider surgery and one said"yes" and the other said "anyone in your situation should probably consider surgery".
The decision to offer surgery to anyone at any age is a complicated process involving numerous variables. For older persons, the decision is complicated by concommitant conditions such Type 2 diabetes, osteoporosis, cardiac conditions, frailty, etc.
Susan

[burdle]

That makes absolutely no sense.

Remember I am in UK. The reason I am given is that

a) there is no guarantee I will not be in worse pain
b) the risks for fusion are outweighed by any benefits
c) I will lose all mobility ( my fusion would be from T2 to Sacrum.


However I am encountering a lot of people my age who are being told the same thing regarding surgery at my age- even though It was suggested I wait when I was in my early 50s


I would appreciate any tips for future consultations as I am getting worse now.

[burdle]

Burdle, You mean in England....Adult scoliosis surgeries can be brutally expensive....more than the cost of therapy depending on age and how complex one is and if there are multiple procedures. They do scoliosis surgeries on elders here in the States. Linda would know, I believe up to the mid 80's. depending on medical condition.

I have said in the past that if I had to do it all over again, age 40 would have been easier. I had 60's at age 40.

For adult scoliosis surgical candidates who skipped fusion in their younger years, (There are many of us) It would be nice if there was a simple rule or formula for decision making. 40:40 meaning age 40, with a 40 degree Cobb might not work since 40 degrees might not be enough to warrant surgery. 50:50 meaning age 50 with a 50 degree Cobb might be too old for some.

45:45 seems better......At age 45, with a 45 degree curve, its time to start thinking about things. Sort of like a gas gage in a car, we start with a full tank and have plenty of time until the yellow low warning light flashes. Then its time to start thinking about gas...

If you are a surgical candidate, and want surgery that you cant get in England, you might consider coming to the US.

Ed

The problem is that once you get to a certain age you are lumped in with all the others who have degenerative back pain. I can sort of see why but I think that someone who has struggled for years with pain from AIS scoliosis is different from a recently degenerative de Novo scoliosis but surgeons don't look with same eyes. they just look at pain and they do not treat 'pain' with surgery.

[titaniumed]

The problem is that once you get to a certain age you are lumped in with all the others who have degenerative back pain. I can sort of see why but I think that someone who has struggled for years with pain from AIS scoliosis is different from a recently degenerative de Novo scoliosis but surgeons don't look with same eyes. they just look at pain and they do not treat 'pain' with surgery.

Burdle, It sounds like you are seeing a "regular" orthopedic and not a scoliosis surgeon. Scoliosis requires a scoliosis surgeon as they are trained to balance the spine, regular orthopedics are not. If you have scoliosis, I would NOT have any spine surgeries done unless its done by a scoliosis surgeon. I saw a regular orthopedic many years ago because we didn't have a scoliosis surgeon in town, and he told me that he was NOT operating on me. He shook his head for several minutes one time in a meeting. If you sense strong hesitation....... that's not a good sign.

My pain was treated with surgery. Nothing else worked anymore, having multiple (4) lumbar herniated discs in a 70 is a disaster. I fought that battle for 6 years. Hot water soaks, massages, NSAID's, and bed rest.

I do not have a problem with mobility. I should practice my Elvis moves, make a video, and send that off to SRS.

"Ti-Ed does Hound Dog 1957".

I just have to figure out how to get the groove back, that's the hardest part. (smiley face)

Ed

[Tilted]

Burdle, It sounds like you are seeing a "regular" orthopedic and not a scoliosis surgeon. Scoliosis requires a scoliosis surgeon as they are trained to balance the spine, regular orthopedics are not. If you have scoliosis, I would NOT have any spine surgeries done unless its done by a scoliosis surgeon. I saw a regular orthopedic many years ago because we didn't have a scoliosis surgeon in town, and he told me that he was NOT operating on me. He shook his head for several minutes one time in a meeting. If you sense strong hesitation....... that's not a good sign.

My pain was treated with surgery. Nothing else worked anymore, having multiple (4) lumbar herniated discs in a 70 is a disaster. I fought that battle for 6 years. Hot water soaks, massages, NSAID's, and bed rest.

I do not have a problem with mobility. I should practice my Elvis moves, make a video, and send that off to SRS.

"Ti-Ed does Hound Dog 1957".

I just have to figure out how to get the groove back, that's the hardest part. (smiley face)

Ed

Last night I watched a 25 year old UK woman with scoliosis end her wrestling career; she didn't even know she had scoliosis until she joined the WWE!

https://www.youtube.com/watch?v=QfNG-YJ3YmU

http://www.dailymail.co.uk/news/arti...-NYC-bout.html

https://talksport.com/wwe/suspended-...k-161021214296

[burdle]

Burdle, It sounds like you are seeing a "regular" orthopedic and not a scoliosis surgeon. Scoliosis requires a scoliosis surgeon as they are trained to balance the spine, regular orthopedics are not. If you have scoliosis, I would NOT have any spine surgeries done unless its done by a scoliosis surgeon. I saw a regular orthopedic many years ago because we didn't have a scoliosis surgeon in town, and he told me that he was NOT operating on me. He shook his head for several minutes one time in a meeting. If you sense strong hesitation....... that's not a good sign.

My pain was treated with surgery. Nothing else worked anymore, having multiple (4) lumbar herniated discs in a 70 is a disaster. I fought that battle for 6 years. Hot water soaks, massages, NSAID's, and bed rest.

I do not have a problem with mobility. I should practice my Elvis moves, make a video, and send that off to SRS.

"Ti-Ed does Hound Dog 1957".

I just have to figure out how to get the groove back, that's the hardest part. (smiley face)

Ed

Hi Ed

I see Sean Molloy who is one of the top scoli surgeons in UK . he is not alone in UK for not recommending surgery for adults . He says my curves are balanced and that is what they look at first. Cosmetically I am ok- not as good as I would like and have dealt with cosmetic issues now ( no neck etc) for some years). The problem I have is PAIN and they tell me fusion surgery is never done for pain as at my age I am likely to be in as much pain ( different pain) after surgery.

[KathyInIowa]

Hi Ed

I see Sean Molloy who is one of the top scoli surgeons in UK . he is not alone in UK for not recommending surgery for adults . He says my curves are balanced and that is what they look at first. Cosmetically I am ok- not as good as I would like and have dealt with cosmetic issues now ( no neck etc) for some years). The problem I have is PAIN and they tell me fusion surgery is never done for pain as at my age I am likely to be in as much pain ( different pain) after surgery.

Hi, Burdle.

I'm curious, when your doctors tell you that fusion surgery is never done for pain - do they explain why? I had my surgery at age 55 - and it was all BECAUSE OF the pain. My curve was lumbar, 45 degrees or something like that, I don't remember for sure but I know it was in the 40s. My scoliosis was "adult onset" - I didn't know I had it until age 45 - at the time my xrays were measuring a small curve, something around 23 degrees. They said at my age, I probably wouldn't get any worse. But, in 10 years, my curve worsened by almost 20 degrees. Degeneration was happening fairly quickly and there was nothing I could do to stop it.

I had lots of pain - bone pain (bone on bone), nerve pain (pinched nerves) and muscle pain (muscles being pulled every which way for years). Is this the type of pain you have?

If so, I don't understand why your surgeons say surgery won't help and I would question them on that. With my fusion, my bone pain went away (no more movement), my nerve pain went away (the pinched nerves were somehow releasesd with the fusion and jacking my disc space back up with cages), my muscle pain is almost gone (I'm just under 2 years out of surgery). Right after surgery my pain was very little, except the soft tissue takes a long time to heal and "like being in a different place."

I know you are in the UK and they look at things differently, but the concept that surgery "might make you have worse pain" doesn't make sense to me. Well, we all were in that situation since we don't know what our outcomes will be. Yes, there are probably lots of people who come out of surgery with more pain than when they went in. But, I don't think that is the norm.

I'm just saying if I were you, I would ask the surgeon to explain why he thinks your outcome would "probably" not take away your current pain and possibly leave you in different pain than you are in now. What kind of different pain is he referring to? Is there much more pain that the combination of bone, nerve, muscle, tendon pain?

Kathy

[titaniumed]

Last night I watched a 25 year old UK woman with scoliosis end her wrestling career; she didn't even know she had scoliosis until she joined the WWE!

https://www.youtube.com/watch?v=QfNG-YJ3YmU

http://www.dailymail.co.uk/news/arti...-NYC-bout.html

https://talksport.com/wwe/suspended-...k-161021214296

Dave, glad to see you following along.....Sometimes we get a little sidetracked around here.

She really got kicked hard in that video....she is a tough one, no doubt. You cant see any shoulder lean, or any rib humps when she turns around in the video. She probably has a small thoracic curve. Professional wrestling is not a spine friendly occupation and its a good thing she retired. I would bet Dr Uribe told her to stop after he saw that video. The wrestling folks should not have let her continue in the ring after having her neck fused. Fusions can crack, I was warned by my surgeon when talking about skiing. I have not skied in a few years, and I don't want to get hurt and do anymore recoveries.

Her surgeon is Dr Juan Uribe, he is a Colombian Neurosurgeon and Scoliosis surgeon from Medellin, Colombia. I will be down there next winter. I know about him, since I travel down there every blue moon. He is also an SRS surgeon. If I have a problem down there, he would be my pick. Medellin has the best hospitals in all of South America.

Giving up a sport is never an easy thing. I have skier friends that are begging me to go and have been refusing lately. Its better to be safe than sorry.

Ed

[Tilted]

Dave, glad to see you following along.....Sometimes we get a little sidetracked around here.

She really got kicked hard in that video....she is a tough one, no doubt. You cant see any shoulder lean, or any rib humps when she turns around in the video. She probably has a small thoracic curve. Professional wrestling is not a spine friendly occupation and its a good thing she retired. I would bet Dr Uribe told her to stop after he saw that video. The wrestling folks should not have let her continue in the ring after having her neck fused. Fusions can crack, I was warned by my surgeon when talking about skiing. I have not skied in a few years, and I don't want to get hurt and do anymore recoveries.

Her surgeon is Dr Juan Uribe, he is a Colombian Neurosurgeon and Scoliosis surgeon from Medellin, Colombia. I will be down there next winter. I know about him, since I travel down there every blue moon. He is also an SRS surgeon. If I have a problem down there, he would be my pick. Medellin has the best hospitals in all of South America.

Giving up a sport is never an easy thing. I have skier friends that are begging me to go and have been refusing lately. Its better to be safe than sorry.

Ed

She was promoted to management after the former manager (Daniel Bryan) returned to wrestling after multiple concussions. She said in an earlier interview that she should be seeing a chiropractor and doing yoga.

Do any of you go to the gym in order to maintain muscle? The scoliosis gym dev said that PT is great at building muscle but the exercises are too general.

https://www.youtube.com/watch?v=ddGC36rVZz8

[Pooka1]

The scoliosis gym dev said that PT is great at building muscle but the exercises are too general.

My comment to that is "PROVE IT".

Nobody has shown that building core and getting fit in general is worse for treating pain than any PT dreamed up my any lay person such as this one.

And certainly NOBODY BUT NOBODY has shown ANY PT, targeted or general, can reliably and permanently even slow curve progression not to mention correct a curve.

PT for pain, yes. "Special" scoliosis PT for curves... nonsense. If someone whats to disagree then they have to prove it.

[burdle]

Hi, Burdle.

I'm curious, when your doctors tell you that fusion surgery is never done for pain - do they explain why? I had my surgery at age 55 - and it was all BECAUSE OF the pain. My curve was lumbar, 45 degrees or something like that, I don't remember for sure but I know it was in the 40s. My scoliosis was "adult onset" - I didn't know I had it until age 45 - at the time my xrays were measuring a small curve, something around 23 degrees. They said at my age, I probably wouldn't get any worse. But, in 10 years, my curve worsened by almost 20 degrees. Degeneration was happening fairly quickly and there was nothing I could do to stop it.

I had lots of pain - bone pain (bone on bone), nerve pain (pinched nerves) and muscle pain (muscles being pulled every which way for years). Is this the type of pain you have?

If so, I don't understand why your surgeons say surgery won't help and I would question them on that. With my fusion, my bone pain went away (no more movement), my nerve pain went away (the pinched nerves were somehow releasesd with the fusion and jacking my disc space back up with cages), my muscle pain is almost gone (I'm just under 2 years out of surgery). Right after surgery my pain was very little, except the soft tissue takes a long time to heal and "like being in a different place."

I know you are in the UK and they look at things differently, but the concept that surgery "might make you have worse pain" doesn't make sense to me. Well, we all were in that situation since we don't know what our outcomes will be. Yes, there are probably lots of people who come out of surgery with more pain than when they went in. But, I don't think that is the norm.

I'm just saying if I were you, I would ask the surgeon to explain why he thinks your outcome would "probably" not take away your current pain and possibly leave you in different pain than you are in now. What kind of different pain is he referring to? Is there much more pain that the combination of bone, nerve, muscle, tendon pain?

Kathy

Hi

you are so right- I have real trouble understanding my consultant. His words for me were 'I need you to be crawling in on your hands and knees begging me for surgery' In other words any would be better that what I had so to speak. That was a very cruel thing to say and triggered a bout of depression - I did not tell anyone till 5 weeks later at Christmas when I realised how much I had been upset and sort of broke down when all my family were around. He also said that he though we would 'meet' in the operating room at some future date! He says there are so many risks to the surgery because it would be s1 to sacrum and that I would lose most of my mobility and probably be in a worse ( but different ) pain. It is because my curves are technically balanced so even though I am progressing there is no need to balance me out. I can sort of understand but in the future what is to say that one curve will outstrip the other- my curves are 49, 59 and 49 progressing at about 1 degree a year- but so much pain with it! But he also said we do not do this op to top pain - there has to be other reasons as well.

[burdle]

My comment to that is "PROVE IT".

Nobody has shown that building core and getting fit in general is worse for treating pain than any PT dreamed up my any lay person such as this one.

And certainly NOBODY BUT NOBODY has shown ANY PT, targeted or general, can reliably and permanently even slow curve progression not to mention correct a curve.

PT for pain, yes. "Special" scoliosis PT for curves... nonsense. If someone whats to disagree then they have to prove it.

Hi,

I agree with special scoliosis PT not reducing curves but surely we need special PT for scoliosis so as not to exacerbate pain. Certain exercises done on certain curves make pain worse. This is where I feel physios could make more of an effort to devise pt that helps pain from scoliosis and not treat everyone as if they were symmetrical.

[Pooka1]

Hi,

I agree with special scoliosis PT not reducing curves but surely we need special PT for scoliosis so as not to exacerbate pain. Certain exercises done on certain curves make pain worse. This is where I feel physios could make more of an effort to devise pt that helps pain from scoliosis and not treat everyone as if they were symmetrical.

Hi Burdle. I work out. When certain things hurt my trainer stops doing them with me so as not to exacerbate pain. It isn't always a matter of being cognizant of asymmetry as everyone s asymmetric for various reasons. You are balanced and maybe be more symmetric than some people who don't have scoliosis but have a bad hip. I am almost never bilaterally lame when something goes out... it is just one side. My right shoulder is problematic but not the left. My trainer finds exercises that I can still do on both sides. People with scoliosis would be the same... if it hurts don't do it. PT programs might be different for different people depending on the curve type, size, location, etc. I don't think there will be a one-size fits all for pain. We are lulled into that by the idea of one size fits all for curve that Schroth and others push but I don't think that idea will map to pain treatment.

I don't think it is known if there are specific scoliosis-targeted exercises that treat pain better than general ones. We just don't know. It could be some general ones that many people do in the gym routinely happen to also be best for scoliosis pain. Nobody knows. Research may reveal there is no specific PT that is better than general core strengthening. Who knows.

[burdle]

Hi Burdle. I work out. When certain things hurt my trainer stops doing them with me so as not to exacerbate pain. It isn't always a matter of being cognizant of asymmetry as everyone s asymmetric for various reasons. You are balanced and maybe be more symmetric than some people who don't have scoliosis but have a bad hip. I am almost never bilaterally lame when something goes out... it is just one side. My right shoulder is problematic but not the left. My trainer finds exercises that I can still do on both sides. People with scoliosis would be the same... if it hurts don't do it. PT programs might be different for different people depending on the curve type, size, location, etc. I don't think there will be a one-size fits all for pain. We are lulled into that by the idea of one size fits all for curve that Schroth and others push but I don't think that idea will map to pain treatment.

I don't think it is known if there are specific scoliosis-targeted exercises that treat pain better than general ones. We just don't know. It could be some general ones that many people do in the gym routinely happen to also be best for scoliosis pain. Nobody knows. Research may reveal there is no specific PT that is better than general core strengthening. Who knows.

Hi,

My point is that given the huge constraints on health budgets and the myriad of opportunist who claim a stake in the pain management market that more effort should go into precisely finding out what may specifically help with pain.

I myself hurt whenever I do any exercise. It would be much better if I knew what exercises to avoid and which ones to persevere with. The standard exercise is for both sides of the midline. I would maintain that for those of us with a right thoracic curve the idea should be to strengthen the weaker muscles and not so much the overworked ones. Then the opposite for the left lumbar etc. It is this sort of exercise input and research that is required. remember there are far more people with untreated curves than there are with treated ones. And the ones with untreated ones are left to just 'get on with it'!

[titaniumed]

Hi

you are so right- I have real trouble understanding my consultant. His words for me were 'I need you to be crawling in on your hands and knees begging me for surgery' In other words any would be better that what I had so to speak. That was a very cruel thing to say and triggered a bout of depression - I did not tell anyone till 5 weeks later at Christmas when I realised how much I had been upset and sort of broke down when all my family were around. He also said that he though we would 'meet' in the operating room at some future date! He says there are so many risks to the surgery because it would be s1 to sacrum and that I would lose most of my mobility and probably be in a worse ( but different ) pain. It is because my curves are technically balanced so even though I am progressing there is no need to balance me out. I can sort of understand but in the future what is to say that one curve will outstrip the other- my curves are 49, 59 and 49 progressing at about 1 degree a year- but so much pain with it! But he also said we do not do this op to top pain - there has to be other reasons as well.

Burdle, I see.....I didn't know. You are a surgical candidate. I thought you were slightly under the surgical threshold.

You are in the same situation I was in years ago when I was in my talks with my surgeon. Believe me, it was King Kong and Godzilla sometimes with the adjusting of my attitude....The talks about complications had me in disbelief I guess, its something that they have to talk about, and I signed waivers. I was like, "Are you kidding me?" I can go blind? Yes. The list was large. Complications were guaranteed 100%. He told me that something was going to go wrong. He also told me they would keep me under for a few days because I wouldn't be able to withstand the pain right after the surgeries. During that stage in ICU, I didn't feel a thing. They have the ability to remove ALL pain, that's for sure. The pain comes later when you wean off oral meds, that's the hard part.

My expectations were squashed, I didn't know what to think? I was also REJECTED and the pain was killing me. I couldn't sit down and in the car was just mind blowing pain. At the end, nothing was working, Chiro, massage....nothing. I had to prepare. Pain made my decision for me. Herniation's produce and alarming burning pain. Its a whole new category.

I then went in on the next meeting and told him that he has to do surgery, I am going to die. I can hang in there no matter what happens. I CAN DO THIS.

He then told me that "It will help" Those were the words I needed to hear. Any improvement was better than what I went through. That's when I set my date. He then ordered extensive blood work and more tests preparing for the surgeries.

He told me it was a 1 year recovery. It took 2 years with my shoulder surgery and gall removal surgery. I was 90% recovered after 1 year. 2 years for complete recovery. I had a 5 level ALIF which is extremely invasive. They did the front surgery first, then the back 2 days later.

After the surgeries, my recuperative properties went into a maximum mode. My will to heal through it all was as powerful as can be. I also did my surgeries with a broken shoulder and shattered humeral head, and my arm didn't work. In the end, it all worked out....I had no decision, it all had to be done. Surgery saved my life.

Ed