Update on me and MULTI-TOPIC rambling

[tonibunny]

It's a different Cotrel.

Wow! Is it? What's the name of the other Cotrel? A friend of mine had CD instrumentation and I had the EDF casts (the table was called a Risser-Cotrel table) and our surgeon at Stanmore said they were both named after the same guy. If there's two top scoliosis doctors called Cotrel then it's not surprising if they got confused though.

ETA According to this article, Yves Cotrel did propose the EDF technique:
http://www.ejbjs.org/cgi/reprint/59/4/504.pdf

And according to this one, he co-invented the CD rods:
http://journals.lww.com/orthopaedicn...ntation.3.aspx

And here here's some info about the Cotrel Foundation, with a pic of Yves Cotrel (and Jean Dubousset) on the front page:
http://www.cotrelspinalresearchfound...m/Welcome.html


It sounds like the same guy to me, unless there are two Yves Cotrels?

[jrnyc]

i could not function without pain meds...so while some are knocking them, others need them to ...survive.....they serve a temporary purpose...though i know some who use them for long term....

rohr...there are some braces that cost $5000 and more...hope they can help you...
if a brace reduces your pain...great...but any permanent reduction on a grown adult...i...dont ...think...soooooo

jess

[rohrer01]

At this stage in the game, I too, can NOT function without pain meds. To be honest, I don't think I could even walk at this point. I have had a couple of scares WITH the medications. I almost fell flat on my face yesterday just getting up from a nap because my right leg decided it wasn't going to work. It wasn't numb or painful, just not coordinated. Thankfully we have a 4 poster bed and I caught myself. The other issue is breathing becomes increasingly painful. That CAN'T be healthy, even though I get through it. I had that happen to me last night. I had a part in a little skit in church where all I had to do was sit. All of a sudden, WHAM! My intercostal muscles decided to cramp and it almost brought tears to my eyes. I didn't want to be a spectacle in front of about 60 + people. My husband said he didn't notice. But it's that UNPREDICTABLE.

To be honest, flerc, I don't think they even offer braces here where I live for adults. I hear that they are extremely uncomfortable and that's why they have compliance issues with adolescents. I will ask, though. It is spinecore, right? I would not expect any permanent reduction in the curve, but it would be nice to see if there is a relation between curve and pain. Although, when you think about it. With surgery, you get the straightening from the inside, meaning all the forces used are directed at the spine itself. With any kind of a brace, you are applying all the forces externally. Logically, you would think that this could cause soft tissue compression issues that are not good. Sometimes soft tissue damage can be permanent. I think of older people who get bed sores. I'm sure similar things can happen when strong forces are applied to any area of the body externally. So we will see. I will ask, but I try to look at all sides of an issue. If it is available, I will try it at least temporarily. If it CAUSES pain or compression spots (not even sores), then I will discontinue. You really have to be careful that blood flow to soft tissue is maintained.

A question to flerc. Why is your daughter non-compliant? If you and her mother live separately, then it would be best for your daughter if you and her mother could sit down and come up with a plan together that you can all live with. Ultimately, your daughter is going to be the one to live with the aftermath of the decisions made to manage her disease. I wish her the best.

Again, thank you all for your input and advice.

[rohrer01]

I also have a friend who needed spine surgery, BADLY! She opted for pain meds, then it came to the point where her spine was sooooo bad that there was no longer a surgical option. She lives with/for her meds. It's so sad. I have seen her go from a giddy vibrant person, to a literal recluse that sits in a dark, and I mean DARK, room all day. I do NOT want that to happen to me. I will NOT let that happen to me. I know the pain meds affect the brain, and they affect each person differently. Not a good future to look forward to. I love her so much and it just kills me to see her this way. I wish she would have at least tried the surgery while she could. Then, if it didn't work, there would be more justification to stay on the meds.

[flerc]

Of course the possibility of permanent reduction of some degrees could not be the objective. The only one should be to make the proof of reduction or not of pain with reduction of the curve. In fact I believe that when growth is absolutely finished as is supposed to be in your case, a perfect muscular and neuromuscular treatment should to be performed to keep some significant reduction (maybe you could find it, why not?) and probably (I'm not sure of that) other absolutely different kind of treatment should to be performed too, so I know it would be so difficult that it could be reached, but probably a few degrees reduction could remains and encourage you to other kind of solution. I agree that probabilities are against that possibility and as I said is only a wish, but when we talk about probabilities we are talking about a lack of certainty.
Of course it would only could be "the icing on the cake".
I'll continue next.

[flerc]

With surgery, you get the straightening from the inside, meaning all the forces used are directed at the spine itself. With any kind of a brace, you are applying all the forces externally.

Yess!! I absolutely agree with that point. In fact that's the reason because I believe for so often fails of brace during growth. It seems so obvious for me that I could not believe that doctors don't realize that elemental fact!
In fact, surgery apply an external force, directed to the spine itself, but the source of that force is external. I know there are two other forms of external forces directed at the spine itself (maybe no so direct as surgery at all). In fact I know about another form too, but I'm not sure if it could be applied in human beings.

Logically, you would think that this could cause soft tissue compression issues that are not good. Sometimes soft tissue damage can be permanent. I think of older people who get bed sores. I'm sure similar things can happen when strong forces are applied to any area of the body externally. So we will see. I will ask, but I try to look at all sides of an issue. If it is available, I will try it at least temporarily. If it CAUSES pain or compression spots (not even sores), then I will discontinue. You really have to be careful that blood flow to soft tissue is maintained.

Again I agree with you. A proof should not to be harmful.
But brace would not be used to reach that straightening, it would only be used to keep that and I suppose it would not to be too much force required for that purpose, but maybe I wrong, don't know.
Internal or external forces could be used to reach that straight and I don't believe that it could imply that kind of damages. Even the highest external force that could be imagine in a conservative method as Fed Machine is, is being used now in adults.
I'll continuous next

[flerc]

To be honest, flerc, I don't think they even offer braces here where I live for adults. I hear that they are extremely uncomfortable and that's why they have compliance issues with adolescents. I will ask, though. It is spinecore, right?

AS I said to you, I think that only SpineCor could be used by an adult, but as I also said, I have not any idea about braces, I could say that I have never seen one.
I hope that SpineCor could be useful and if it's not, surely I could not perform that plan with my daughter, but I really hope that you could get someone that could not be so uncomfortable for you at least to be used for some days.
I'll cont..

[dailystrength]

Hi Rohrer,
Thanks for sharing your deepest thoughts and concerns. That makes the rest of us not feel so alone. I have a 34 T and 49 L (with follow up in a month - whoohoo!), and I have been able to manage my severe pain and get off meds. I did get a mattress topper http://www.amazon.com/gp/product/B00...ef=oss_product after looking at reviews. I have been pleased with it. I also got a memory pillow. A recent item I have really benefited from is the book Curves, Twists, and Bends http://www.amazon.com/gp/product/184...ef=oss_product. Her stretches really do help and the author is one who KNOWS. A third VERY helpful item I got recently is the balance ball chair: http://www.amazon.com/gp/product/B00...ef=oss_product. This has made a big difference. I can feel my spine coming into alignment, unless it's my imagination. I will find out in a few weeks. Thanks again for sharing. I relate about the baby thing. Having never had children, I deeply regret that at this point I do not want to put myself through that. At 44 it's nearly too late anyway, and I'm not even married - ha ha (almost, last year, but... well, I will refrain from commenting about him). Anyway, thanks for sharing your burdens. Christina

[flerc]

A question to flerc. Why is your daughter non-compliant? If you and her mother live separately, then it would be best for your daughter if you and her mother could sit down and come up with a plan together that you can all live with. Ultimately, your daughter is going to be the one to live with the aftermath of the decisions made to manage her disease. I wish her the best.

In fact we all live together with my other son too but with my wife, we have the most opposite concepts, strategies, thoughts.. that could exists about problem solving, and health matters is not the exception.. In fact, we are so different in our points of view, we could say that it’s a mystery for us that we remains together.
Since this problem appears in our life, we had terrific discussions, we have never seen so close the divorce.
Discussions seems to never end, but since lasts weeks I could say that we reached a balance. Both of us think that is very important her emotional state. We believe that she must to feel happiness, a great lack of worries and to live a good teenage. I saw her how she twist when she is worry or she feel bad for something.
It was so difficult to her to leave dance 2 years ago. She loved Arabic dance, jazz dance and hip hop and she did not forget it. I don't want to imagine what could happens if we propose her to use a rigid brace. When she was 11 or 12 years old it surely would be so different..
But she probably not refuse to wear the Spinecore. I showed her some videos and I think that if she see her Gpr PT and also myself sure enough that it could reduce degrees, she would accept to wear it.
I'm not sure if I'm answering your question.

I wish her the best

Thanks, I’m sure about tor feeling. I think this is the best forum I have ever known.

[jrnyc]

i am surprised about the ball chair thing..i cant handle stiting on a ball...and back before the pain got so bad, i told my trainer in the gym that i couldnt exercise on one either...and i tried! the pain of my spine shifting was waaay too much..but i am at 40 thoracic and 61 lumbar..new measurements to be taken april 12th at surgeon's office..so maybe higher curves hurt on those balls more...

i am very surprised anyone with scoli can handle that thing...but maybe it is my herniated discs or spinal stenosis that makes it so painful, too...plus the listhisis of L3 collapsing onto L4 and L4 onto L5

jess

[foofer]

A little warning about the exercise balls commonly used in gyms and exercise classes....

For years, I used one to sit on while I worked. I loved it, as it moved around constantly so it seemed to prevent lumbar muscles from tightening up. From time to time, they would slowly deflate and I would have to replace them...I work with pins all the time, and while I never found one, the way you might find a nail in a road tire after a flat, I would assume that was the cause. A couple of years ago on the job, I was working away and BAMM! The thing absolutely exploded into two pieces, like orange peel pieces, and I hit the ground like a chair had been pulled out from under me. Felt it in the neck, had to go home, out of work for a few days, back to the back doctor....have neck degeneration that it aggravated but nothing more devastating. The ortho doc said he had seen several of such injuries...

It has not been the same since- definitely have neck issues more than I once did.

I think the ball chair with frame would not be as dangerous, as the ball is embedded in a framework. But anyone out there exercising with one, please reconsider, or at least be sure that you use anti-burst balls, and then don't use those either, in my painful opinion.

Amy

[Karen Ocker]

There may come a time when surgery cannot be done

To everyone who is trying to manage large curves using "alternatives".

There can come a time when breathing capacity is so reduced that anesthesia becomes dangerous/impossible. The operation cannot be done without anesthesia. We are talking in the 80+ deg range but impairment begins before that. It doesn't happen overnight but sneaks up. Those with triple curves, like myself, lose it faster.

Before my surgery, I was contacted by a person with a large curve who told me not to delay because it was too late for her. She needed oxygen 27/7eek: She said she waited too long.

[jrnyc]

hmmmm...i knew about the damage to heart, lungs etc with largte thoracic curves...mine was only at 40 last october...should get new measurement april 12th at nyc scoli surgeon...but wonder what larger lumbars mess up...i mean, i know aobut the PAIN!! wonder if it messes up other stuff...? i feel like i have to pee all the time lately...never had kids, so it couldnt be that...could be aging, i guess...or...i wonder if my 61 degree lumbar (as of oct. 09) is starting to play a part...?

hmmm wonder what surgeon will have to say...

jess

[dailystrength]

Hey Jess, I can relate- my larger curve is my lumbar curve - at 49 last year.- I will go the first week of May for new x-rays. I do wonder if my innards (like intestines) get squished. I don't have the frequent peeing issue, but if I've got to do something else, I have to run sometimes! Probably toning up the whole area - the Kegel thing - would help with that.
I'm sorry you can't sit on a ball. I have degeneration but don't know any details about it. With the ball chair, it is stable, and I fix myself in that one position. In fact, I am careful to not bend my back but stay in that position, even after I get up, while moving around. I am bending with my legs and not my back. Today I was cleaning up around the house, and I have not had pain, though I am constantly aware of how I am moving and breathing. Speaking of breathing, I am finding that it is so important to breathe into the concave side, to get some life back to the atrophied muscles.

And Amy, thanks for that warning! I will stop bouncing!

[dailystrength]

There can come a time when breathing capacity is so reduced that anesthesia becomes dangerous/impossible. The operation cannot be done without anesthesia. We are talking in the 80+ deg range but impairment begins before that. It doesn't happen overnight but sneaks up. Those with triple curves, like myself, lose it faster.

Before my surgery, I was contacted by a person with a large curve who told me not to delay because it was too late for her. She needed oxygen 27/7eek: She said she waited too long.

Thank you for this reminder, Karen. Is there a test a Dr can do for breathing capacity, do you know?