Scoliosis, autonomic dysfunction and oxidative stress

lenora

Senior Member
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4,595
It makes a certain amount of sense (to me) that a thiamine shortage can cause problems. I've had scoliosis, kyphosis and lordosis, since childhood & have worn casts and braces almost since I can remember. (Not now, though). I also have other neurological illnesses caused by lack of vitamins in my mother...this is a congenital problem.

I'm going off fosamax after many, many years of its use. I have severe osteoporosis, have broken bones and will definitely be adding thiamine to my new vitamin regimen.

If anyone knows the ratio of calcium, mg., strontium, etc., + thiamine (B-1), etc., kindly let me know. I'm now in the shrinking mode! I don't want injections of something like prolia & co. I can't afford anymore breaks. Lenora
 

Nord Wolf

The Northman
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Location
New England
I sent this article to my PT who is a certified Postural Restoration Therapist trained in Nebraska by the Institute.

~~~~~~~

"Yes, scoliosis is the result of oxidation / respiration. How people get oxygen into the asymmetrical thorax and cranium forms our structure. Which in turn affects autonomics, hormones, organ regulation, etc...

Thiamine deficiency very interesting and the thought of incorporating thiamine supplementation to aid in the "healing" of the autonomic nervous system is fascinating and may be worth investigating with chronic pain patients.

PRI (especially the Postural Restoration Institute in Nebraska) has been successfully treating patients with dysautonomia. This supplemental /nutritional potential is awesome. FYI in Nebraska they have people flying in from around the world to be evaluated and treated."


~~~~~~~

Very interesting that they are treating dysautonomia patients at the Postural Restoration Institute. It makes sense, especially for people with various forms of severe postural imbalances.
 

Oliver3

Senior Member
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707
Wow, that's amazing!!
" The result of oxidation/ respiration". That puzzles me slightly. This happens in everyone but not everyone gets scoliosis so there has to be smthg else too( although I obviously may be wrong).
Whenever there's a dysautomnic flair in me, I've noticed, increasingly, that there is problems in my back where I have scoliosis.
Thanks for spreading the message on this my friend. Seems like there is something to ones intuitions sometimes.
Would you keep me informed if you hear anymore please?
 

Nord Wolf

The Northman
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512
Location
New England
@Oliver3 -
I think when she is referring to oxidation/respiration as it is in people with compromised respiration from structural issues. The increased stress on the respiratory system due to thoracic structural issues can cause more oxidation than in normal breathing.

I think it makes perfect sense that you notice agitation in the scoliosis compromised section of the spine while dealing with PEM. To me it would seem odd if you didn’t.

I worked with this PT for about 8 years, but not in the last 4. However, we are still in contact. Like I said, she was trained many years ago by the founder of the Postural Restoration Institute in Nebraska. She is quite an amazing PT because she takes in and understands the wholistic nature of structural issues, and what structural issues can create. Every other PT I’ve ever been to was so narrow minded.

Many years ago when still working spec ops I took a massive injury that collapsed part of my chest. Even after all the medical fixing, it left me with pretty strong pectus excavatum. This in turn eventually created mild scoliosis. This is what my PT had been working on. The issue she said to make a dent in the major thoracic structural issue we needed at least 4 hands, even better to have 6 hands working my body at the same time. But where she works didn’t have that many free hands to work on one client.

But after sharing the article you posted with her, and getting her feedback, I’m back in communication with her to see about the possibility of flying to NB for evaluation, but only if the PT center here has enough people to dedicate to the protocols the Postural Restoration Institute might suggest.

Have you had much work done for your scoliosis? My sister had bad scoliosis that would have killed her before she reached 16. She had major surgery back then and had bars put in her spine when she was 15.

I will certainly keep you posted on anything else I find out.

Best,
Wolf
 

Oliver3

Senior Member
Messages
707
That makes perfect sense.
No I've had no intervention. I didn't even know I had scoliosis til I saw Dr perrin.
I'm also thinking I have tethered chord.
When you say it causes difference in breathing do you mean it changes respiration amounts, puts us in fight or flight etc or just the mechanics of breathing change after scoliosis.
I ask because I also did the buteyko method. They claim that c02 can be fed back into the body to strengthen tissue and bone.
They say that over breathing basically causes us to leach many of our nutrients from our body as well as putting us into fight or flight and eventually causing adrenal fatigue and a catabolic state
 

Nord Wolf

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512
Location
New England
@Oliver3 -
Depending on the degree of scoliosis, it can cause breathing stress from a few different avenues:

1- if the scoliosis, or in my case pectus exavatum, is bad enough it can compromise the ribs, sternum, and pine structure around the lungs and muscles and fascia around the lungs = structurally challenging the expansion and contraction of the lungs
2- if the scoliosis is mild it can also create challenges for lung expansion, even if minor, but also when the chest cavity expanse with breath, it can place pressure on various nerves and ligaments in the compromised region of the spine
3- depending on where the scoliosis is, the curvature can stress nerves that connect to the respiratory system, causing stress on it that way

Any unnatural curve of the spine will misshape the rib placement, which will to some degree change breathing dynamics. Scoliosis can also cause a tight diaphragm, which also compromises natural breathing. Some spine specialists will tell you that mild scoliosis causes no harm, and cannot cause symptoms beyond mild discomfort. It is BS. Compromising the spine on any level can create issues elsewhere in the body. It is the spine, the highway from the brain to the entire body after all.

I worked with buteyko method for 12 years. It can help on some levels in my experience, but it certainly wasn’t the miracle breathing they make it out to be. But of course, my pectus excavatum is severe enough to compromise my entire chest cavity, spine, and diaphragm. These days my sternum actually rests on the left ventricle of my heart.
 

Oliver3

Senior Member
Messages
707
Bloody hell!!! What can you do about that?.
Thanks for the detailed explanation.. mechanics of the thorax, neck etc is smthg I haven't looked at too much but I've just had this horrible lurking sense that the spine is a major part of this, therefore I started looking into how to regenerate,( hence the thiamine angle) bone and connective tissue. The way the spine and ribs etc are connected is smthg I know little about.
There was a programme on the BBC about five years ago now. " A doctor in the house".
This girl in her mid 30s injured her back in the gym. She became a reclusive from the pain of movement and got hooked on benzos.
The point of the show was for this doctor to find bespoke treatments to help these curiously difficult cases that normal medicine couldn't help.
The doctor took this girl( who couldn't even ride on a bus without agony) to a Kung Fu master in London. ( I'm aware this sounds ridiculous!!) He was also an expert in the movement of the body and how to repair.
She could barely move. Six months later, this girl was doing Kung Fu drills!!!!
That just made me think how much knowledge about the movement of the body is untapped. And what could be achieved. She was pain free and moving after being written off by modern medicine.

Maybe not a relevant anecdote , but the spine is so implicated in CFS that I'm surprised there are not more people looking into it's dynamics on a physichal level.
I know we often have high pressure in the spine and that b vits are great for that and for muscle strength but I'd love to have some kind of bespoke work out regimen or manipulation or whatever works
 

Nord Wolf

The Northman
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512
Location
New England
@Oliver3 -
Ha, well nothing really. It isn’t negatively affecting the heart function because it isn’t pressing on it. The sternum is just “resting” on the of the left ventricle. In the past if I was working out in a bent forward position I could feel the heart gallop a little trying to push blood through the left ventricle, because with the sternum resting there the heart has more trouble expanding for higher blood flow, but only if I am bent forward. There is no way to straighten the sternum other than a highly invasive and dangerous surgery, of which at my age the survival percentage is low. They perform it on kids with deep pectus excavatum, but adults are a very different story.
We can work with manual physical therapy on the thoracic to keep loosening up the ribcage, intercostal cartilage, spine, and fascia, but that is about it.

Minor scoliosis can be managed and sometimes easily fixed just through physical therapy, proper physical therapy alignment exercises, and breathing correctly. Supposedly even through proper supplements these days, but pectus excavatum is an entirely different beast. The spine is flexible and so can be manipulated, but the sternum is solid bone and cannot be unbent.

Also with pectus excavatum, whether naturally occurring in childhood, or developed from severe thoracic trauma, causes the ribs to misplace and the intercostal cartilage (what connects each rib to the spine and sternum) to grow excessively in order to span the increased space between rib and spine/sternum. This in turn allows the ribs to float and displace more easily than normal ribs. The depth of the sternum inward bend also compromises the expansion and contraction of the diaphragm, and thus lung capacity as well. Naturally, all that pulls on the spine too.

My non-medical guess is that if you have mild scoliosis I bet it could be managed easily through proper physical therapy. My PT has worked with hundreds of people with mild scoliosis with great success. But I have zero understanding of your entire condition, so I’m just throwing out general info here.

As to the story about the woman with spine injury and resulting chronic pain - there is nothing strange at all about a Kung Fu master helping her heal. I am a grandmaster in jujitsu and have helped many people through the years heal from various injuries.

A side story:

About 13 years ago a student of mine said his girlfriend was having health issues and no doctor could figure them out. She was almost incapacitated with them, and they had come on pretty suddenly. She had test after test, visits to specialists across the country and nobody could figure out what was wrong with her. My student asked if he could bring her up and have me look at her. I said sure.
The next weekend they drove in from out of state to my house. I had set up a treatment table outside on the back deck. We lived on a dead end dirt road in the middle of nowhere, much like we do now, and it was a warm sunny day. My student went for a walk in the forest while I worked with his girlfriend. I had her lay on the table. I worked with meridians and points for about an hour. Afterward my student returned and the three of us sat to talk.
I told her she had something in her blood that didn’t belong there and was the root cause of her health issues. I said it was minuscule but very potent, and was starting to invade her organs. My recommendation was that she get extensive blood work done by an infection disease specialist.
They went home and she did as I suggested. In two weeks she had all the lab results and found out she had contracted a rather nasty blood parasite. I asked if they knew where it came from. She confessed she had taken a trio to Africa three weeks before visiting with me.
Anyway, they got her on treatment and she made a full recovery.
 

lenora

Senior Member
Messages
4,595
Good afternoon, all......Interesting story about the young woman and the parasite, @Nord Wolf. Also, your take on scoliosis.

As I've said before, I had(ve) severe scoliosis, kyphosis and lordosis and saw a specialist in Pittsburgh and another in Erie (long story). Each treated it a different way and I was told years later that I was very fortunate to have had the input of two specialists.

In my case, I couldn't even sit....and had to wear heavy braces and body casts for most of my life until I was probably 14 or 15. I also walked a considerable distance each day and I fully believe that was the most fortunate thing that ever happened to me. I was also a bike rider, loved it...but it went when I could no longer balance on a bike b/c of two other neurological conditions I have. In my late 20's or so.

The bottom line, at least in my case, is that I almost escaped from spina bifida...well, I did, at least the lower spinal cord didn't protrude. This is caused b/c of a lack of B vitamins in the mother at a certain stage of pregnancy. L. sided scoliosis (which I have) is a sign of a neurological condition and, if it's bad enough an infant can be born without a brain, just a brainstem.

I was fine for many years and no, I was lucky, it didn't really show up as in one hip being higher than the other, etc. During one of my early surgeries, a rib was broken and I still have trouble with it today....I don't know how it must feel to have a number of broken ribs. Diaphragmatic breathing is important, no question of that. I can no longer walk and miss the many benefits of it. Just keep moving as long as you can. Not overdoing anything, but gentle moving.

My problems were before the steel rod was commonly used for scoliosis. I wonder how those people fare in older age? I haven't seen a specialist in years and wouldn't expect help at this point anyway.

It's important to know about myofascial problems because it's possible that it causes a lot of the problems we commonly have today. I wouldn't go to a chiropractor, but an osteopath and fascial expert (via PT) can help. You just have to make certain that this person specializes in the problem. A chiropractor once worked on me and left me with terrible pain....but there are some who specialize. Just don't let them "crack" your neck or anything else....there are other ways of resolving that pain.

I think the B vitamins (the right ones, a bit harder to figure out) could help since the origin of the problem is usually because of a lack of the same vitamins. I'm willing to give B 1 (Thiamine) a good chance....if my stomach can tolerate any of the B vitamins again. I hope your sister continues to do well, Nord Wolf, and that your rib problem improves (mine eventually did, but it took years). Yours, Lenora
 

Nord Wolf

The Northman
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Location
New England
@lenora -
Thanks for sharing your story on scoliosis. I’m sorry you have to deal with that throughout life. Yes there are so many levels to it and degrees. My sister’s was extreme. My one aunt also had a bar put in her back in the early 60s because hers was also very severe. I had a great aunt on my mother’s side who had severe scoliosis and spent her adult life twisted up in bed before she died from it.
I was lucky in that the scoliosis I have is very, very mild. But I was unlucky with the pectus excevatum. I know for a fact that it is now causing many of my breathing problems, and might be the reason (or part of) me needing to use O2 concentrators. I would not be surprised if the pectus is at least part of the cause of my dysautonomia conditions. I’m working on getting a consult with my PT, who is not only a certified Postural Restoration practitioner of many years, but also has worked with me in the past extensively, knows my history and body, and understands both scoliosis and pectus excavatum.
I agree with you on chiropractors. I will never go to one again. I went to one about 20 years ago and I’ll never go back to any of them again.
My sisters scoliosis is two-fold. Her spine not only bends forward and back, but also twists in opposite directions. So the bar helped hold her spine from bending forward and back, but it still twisted and she has dealt with pain and other complications of it since her surgery back in the late 80s. She used to be a very talented ballerina too. She danced in huge performances in Phili and with the Russian troops.
But I think people with mild to medium scoliosis might have better luck managing it than people with deep pectus excavatum.
I wouldn’t be surprised if your scoliosis didn’t have something to do with some of your conditions Lenora.
 

marcjf

Senior Member
Messages
126
I sent this article to my PT who is a certified Postural Restoration Therapist trained in Nebraska by the Institute.

~~~~~~~

"Yes, scoliosis is the result of oxidation / respiration. How people get oxygen into the asymmetrical thorax and cranium forms our structure. Which in turn affects autonomics, hormones, organ regulation, etc...

Thiamine deficiency very interesting and the thought of incorporating thiamine supplementation to aid in the "healing" of the autonomic nervous system is fascinating and may be worth investigating with chronic pain patients.

PRI (especially the Postural Restoration Institute in Nebraska) has been successfully treating patients with dysautonomia. This supplemental /nutritional potential is awesome. FYI in Nebraska they have people flying in from around the world to be evaluated and treated."

~~~~~~~

Very interesting that they are treating dysautonomia patients at the Postural Restoration Institute. It makes sense, especially for people with various forms of severe postural imbalances.

Iave some postural issues described in that PRI portal. I always wondered, since young, why I could never touch my feet, despite daily stretching sections in the gym. Why do they call it "Postural Restoration". I am skeptical you can actually restore these deep structural issues just through PT.
 

Nord Wolf

The Northman
Messages
512
Location
New England
Why do they call it "Postural Restoration". I am skeptical you can actually restore these deep structural issues just through PT.
I think it is good to be skeptical of all "treatments" for anything. In our shoes I find research, research, and more research is best before deciding on anything.
It is far more than just PT they are doing. Here is the link to the Institute and all their programs.
Hruska Clinic

And the founder:
Ron Hruska
There are some short videos near the bottom of the second links page explaining what PRI is.
 

Nord Wolf

The Northman
Messages
512
Location
New England
Here is an x-ray from maybe 8 years ago from the left side. It clearly shows the depth of the pectus excavatum. I added labels so you all can see what is what, where the PEX is, and where the sternum is actually touching the left ventricle of my heart. How could any doctor think this cannot be causing any of my symptoms, or directly manipulating the autonomic nervous system??? But many have. Only now do I have a healthcare team who acknowledges this as a major factor.

Screen Shot 2023-03-19 at 7.30.15 PM.png
 

Oliver3

Senior Member
Messages
707
Amazing how our intuition is always pissed over. We know better than many doctors what is going on with us.
I only hope that this current new influx of doctors who have been hurt by long COVID in numbers start to place things together.
I know that sounds cold but I'm past caring about that really!
Thanks for sharing.
Btw, I wonder how far down the cascade of events does dysautonomia occur.
Of course it will be different in everyone but it seems like smthg is rubbing us out faster than typicals
 

lyran

Senior Member
Messages
132
Amazing how our intuition is always pissed over. We know better than many doctors what is going on with us.
I only hope that this current new influx of doctors who have been hurt by long COVID in numbers start to place things together.
I know that sounds cold but I'm past caring about that really!
Thanks for sharing.
Btw, I wonder how far down the cascade of events does dysautonomia occur.
Of course it will be different in everyone but it seems like smthg is rubbing us out faster than typicals

I get your point. Mostly doctors who themself have CFS/ME or long COVID take these diseases seriously and are spending their time and effort researching, because they must if they ever want to get better.

One of the leading doctors in my country who gets fair amount of media presence, said that long COVID is probably psychosomatic and these people should just get back to work. I was really pissed off when I read that. It is not a conspiracy theory but a fact that agenda-based doctors get the most media presence.
 
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Oliver3

Senior Member
Messages
707
The shaming and I know better attitude is ruining medicine.
I think a lot of ego is attracted to that profession. It's an expression of narciccism in a way.
If they truly cared. They'd listen.
Let's just, by some wierdness, they were right ( I know, hate saying that because it's obviously a biological disease) well come up with a cure for psychosomatic illness then instead of shaming!
Grrrrrrr makes my blood boil
 

lenora

Senior Member
Messages
4,595
Well, of course it's our fault, everyone wants to spend their life just half-living at best. Those requiring more care are even worse off because they can't even make it to the doctor's office.

Funny, @Oliver3 that you should mention a cure for psychosomatic illness. There have been times when I've wondered if shock treatments would work....I'd certainly try it. I was one of the lucky ones. I had a great neurologist who believed me and recently died. Starting again is a truly new experience. I don't even want to deal with doctors.

My cardiologist believes me b/c I had a heart attack and I'm now the proud owner of a number of stents. My GP believes me....well, the bottom line is that you don't know who will believe you or not. Rheumatologists and certain neurologists are also more inclined to believe the patient. Actually most people with really bad illnesses often have our symptoms. So no, I don't believe you're pretending @Nord Wolf....or any of you. I just hope you'll be able to find help somewhere. We do need a biomarker though....and we need researchers for that.

Believe it or not, we are making progress especially from my beginning of this illness. I think most people now believe it's a real illness compared to years ago. Too many relatives, friends, co-workers, etc., with it to say it doesn't exist. We had the very bad fortune of "coming out" at the same time as AIDS and no, NIH or the government itself didn't want one more immune problem. I just wish we could have had access to the research from it and MS. Yours, Lenora
 
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