nearly 60degs and hoping to avoid surgery

[jrnyc]

no...not offended...and i wrote it before your last post...
but i just meant that it seems that you didn't want to open
your mind to what others have experienced and tried to offer
you...of course you have the right to believe what you wish...
and it can be so tough to accept any of it...
tough to hear about, tough to live with at times...
just my opinion...i did not mean to be hard on you...
sorry if it came off that way....

i am sending you a PM to answer your question....

jess...& Sparky

[hdugger]

There is definitely a difference between surgeons likelihood of operating - some, like Dr. Hey, seem to usually recommend immediate surgery and others, like my son's doctor, seem to prefer to delay surgery. I think it's a difference in deciding where the biggest risk lies - there's a fundamental argument about whether to perform surgery as soon as possible in order to prevent further curving, or whether to delay it in order to delay the onset of degenerative problems brought on by the surgery. Some doctors fall on one side, and some fall on the other.

My son is likewise young (25) and healthy with little pain but a largish (60 degree) curve. His doctor told us to just continue follow-up and not do surgery unless there was a serious issue (progression or pain). He also suggested 'around 60' as a serious re-evaluation time.

If your curve isn't progressing, there's no reason to rush into surgery. The surgery is really just meant to stop the progression and/or to address severe pain.

[LindaRacine]

Good post Gayle.

Mashkine... If there was a genetic test other than ScoliScore for scoliosis, I'm about 99.9% certain that I would have heard of it.

--Linda

[titaniumed]

Hi Maria

Since I have been posting here, you are the 1st Copes patient to post. I also went to Baton Rouge and had him make a brace for me in his early days, for skiing. I was afraid that a devastating skiing crash would be the end..... Art went to jail for insurance fraud a few years back.

We have a similar story, with similar curves and I delayed for 34 years, and made it to age 49 with twin 70’s. My pain could no longer be controlled and lumbar degeneration became an issue.

I never met any surgeon that was gung ho, at least in my case. It was pretty much the same story as you, just hang as long as you can, and wait until you cant take the pain anymore...I had a few Chiros that kept me going, it was effective for pain for many years.....

If you still have your de-rotation cliffs, are you using them? Remember those?

I am wondering where you live? Do you have access to a warm ocean?

We are glad you posted!

Ed

[mashkine]

Hi Maria

Since I have been posting here, you are the 1st Copes patient to post. I also went to Baton Rouge and had him make a brace for me in his early days, for skiing. I was afraid that a devastating skiing crash would be the end..... Art went to jail for insurance fraud a few years back.

Ed

Hi Ed. I salute another Copes survivor! Copes really made my life miserable when I was a teenager. We went to him after a pediatric orthopedist told me it was too late to brace a 14-year old. He was a nasty guy, even though I can't say with certainty that his brace did nothing- maybe I'd be at 70 degrees now without it? Plus it taught me a lot of discipline-all those other aspects of the treatment took so much time and required good planning skills... I've read that he's in jail, though I understand it's for insurance fraud rather than being a "quack" - not sure if such a charge exists anyway )
How fast did your curves progress in adulthood? Are you pleased with the surgery? I myself am terrified of being fused...
I have a lot of Copes gear left over, but it's sitting at my parents house in the US while I live far away now, in Russia - I'm an international journalist. So, to answer your question about a warm ocean... I do take a lot of baths though - they really seem to relax my muscles.
I'm surprised there are so few Copes ex-patients, he seemed to have quite a business going at the time.

[mashkine]

There is definitely a difference between surgeons likelihood of operating - some, like Dr. Hey, seem to usually recommend immediate surgery and others, like my son's doctor, seem to prefer to delay surgery. I think it's a difference in deciding where the biggest risk lies - there's a fundamental argument about whether to perform surgery as soon as possible in order to prevent further curving, or whether to delay it in order to delay the onset of degenerative problems brought on by the surgery. Some doctors fall on one side, and some fall on the other.

My son is likewise young (25) and healthy with little pain but a largish (60 degree) curve. His doctor told us to just continue follow-up and not do surgery unless there was a serious issue (progression or pain). He also suggested 'around 60' as a serious re-evaluation time.

If your curve isn't progressing, there's no reason to rush into surgery. The surgery is really just meant to stop the progression and/or to address severe pain.

What is your son leaning toward? I'm just wondering how people handle this ticking time bomb. I read a lot about younger adults in their 20s-30s with degrees around 60 with no pain who go ahead with the surgery, it really surprises me, especially women who have to fuse the lumbar - what if you have a child and the equipment down there goes bust during labor?
Anyway, that's clearly not going to happen to your son Is he doing anything besides the ubiquitous "waiting and watching"?
I've decided, I think, that I'll hold off as long as possible, and do the max work I can right now to delay progression, anything to avoid fusion for as long as I can. I cannot imagine being unable to flex my spine... It seems like surgery technology has advanced enough that even people in their 70s can have surgery and achieve decent correction, so I'm definitely going to try to delay it. I don't have much pain now, not the kind of pain that makes me non-functional anyway. I only take advil once on a blue moon, otherwise I go swim hard 2-3 km in the pool or hang head down from my bed, that seems to help with the low back pain.

[titaniumed]

I was 50T 50L when I was diagnosed in 1974. By the time I visited Copes, I was 58T, 66L in 1991. I was 70T, 70L in 2007. I progressed slowly as an adult as you can see.

I started having major pain “events” in 2000. In Jan 2002, the sciatica kicked in...Man-o-man! This was after a series of high ski jumps.
CT’s were shot, 4 herniations were verified, and my non-scoli ortho shook his head for 2 minutes speechless. He had me pointed in the direction of USCF since there was no scoli qualified in Reno at that time. I took Celebrex and recovered by swimming in the ocean in Hawaii.

The battles continued on and off with the sciatica and I set massage and hot soak records.....By 2007, the pain was out of control. Degeneration had run its course, and the alarm bells were ringing LOUD. DDD does lead to vertebral end plate damage, it doesn’t bleed, and that had to be cut out. Without blood, its all downhill, before and after....

I always knew that I would be operated on. Everyone including my Chiro’s told me this, it was pretty much a given and prepared for all those years. I called down to the ortho’s office, he retired and was replaced by my current surgeon. We talked for a few years and in Oct 2007, I made the decision. I ran out of time. He did ask why I waited so long? I should have had surgery many years ago, now it made things quite difficult. I had to have an extensive anterior work done and they ground out good portions of my lower spine.

I was told that it would feel like I was run over by a train.....and they kept me out for a few days after in ICU. Of course, you don’t feel a thing when you are out, its when they wake you up, and the weaning process starts from then on. All the “old” aches and pains were replaced by surgical pain which you eventually heal from. My recovery took 1 year to get to 90%. I was off work for 18 months....

I am pretty much pain free now....and had forgotten what being pain free was like. I will have a gripping feeling in the thoracic spine when winter storms enter the area, when the atmospheric pressure drops. Its not really pain, it’s a tight feeling......its common.

I would love to hear what they do about scoliosis in Russia....We have Irene who came over to the US years ago, but am interested in what you have to say about any methods used, and so forth. Do you have to travel to a large city? How many scoli surgeons are over there? What awareness or Russian forums are there? Do they have Chiro’s over there? Etc.....What area or city are you in? Do you hum the theme from Dr Shivago? (smiley face)

I survived a long period living with scoliosis....pain is very subjective, we build up high tolerances and have trouble knowing and remembering what being pain free is like. I least I forgot....Surgery saved my life. I wouldn’t be here without it.
Ed

[jrnyc]

i would just venture a guess that it is the syrinx and not the kyphosis
that has surgeons hesitating..
others with scoli and kyphosis...hyper and hypo...are posted all over
forum as having no shortage of surgeons volunteering to operate on them...
me included...

i think waiting is a risk...but well understandable...
there are risks in surgery and in not having it, as someone else
pointed out,....
but i do know that healing for an older person is NOT as easy as for
a younger person...and that has been well documented by many...
doctors and patients alike....i am not saying it isn't possible...
just more difficult..and generally slower.

jess

[SpineTime]

I was 50T 50L when I was diagnosed in 1974. By the time I visited Copes, I was 58T, 66L in 1991. I was 70T, 70L in 2007.

I survived a long period living with scoliosis....pain is very subjective, we build up high tolerances and have trouble knowing and remembering what being pain free is like. I least I forgot....Surgery saved my life. I wouldn’t be here without it.
Ed

Hi Ed, maybe you've talked about it before and I missed it, but can I ask how surgery saved your life? Were you having heart/lung issues because of your curves, or something like that? My gosh.

Lisa

[mashkine]

I would love to hear what they do about scoliosis in Russia....We have Irene who came over to the US years ago, but am interested in what you have to say about any methods used, and so forth. Do you have to travel to a large city? How many scoli surgeons are over there? What awareness or Russian forums are there? Do they have Chiro’s over there? Etc.....What area or city are you in? Do you hum the theme from Dr Shivago? (smiley face)
Ed

I think here the approach is more or less the same, with more attention given to physical therapy. Good surgeons use the same hardware as American ones, however there are some local products are not as good. Adolescents used to have these horrible scoliosis camps as well - like summer camps of sorts but for kids with deformed spines - I would guess that there is even more exercise, massage, swimming, etc at those, but I never really looked into it, and maybe they don't exist any more. Most old school doctors here have spectacularly nasty attitudes, both toward parents and kids, and often scare people, but that can be said about the entire public medical sphere here..
Also I think the medical world here is not as drastically separated from the world of alternative medicine - I know at least two MDs who finished top universities, one an orthopedist and another neurologist, who have gone into "alternative" medicine later in life, went to China to learn their techniques, etc. Basically, unlike in the US where there are chiropractic schools separate from medical schools, here these doctors come from one community and go to the same schools, and then branch out. But there are no chiropractors here in the American sense, there are the so-called "manual therapists" who do somewhat similar adjustments, but work more with muscle tissues.