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jrnyc
06-01-2012, 09:43 AM
watched The Doctors today...they showed disc replacement that moves...
for ONLY disc replacement...no scoli involved...
the replacement part moves...it has 2 parts that fit together
and they pivot...so the body can move after the disc replacement
part is inserted during surgery....this particular patient had
replacement of a disc in neck....at C5-6 disc

when will something like this be able to be used for scoli surgery?
the surgeon...from SF Spine Center...Dr Kenneth Light...
said it means the body will be mobile, because humans "are
supposed to be mobile...we are supposed to move and
the SPINE is supposed to move"
he mentioned the "old way" of fusing the discs...
said this new way is better because it preserves movement and
bending...called old way of fusing "archaic"

this is not an attack on fusion...thsi is a question about the future
of scoli surgery...
it makes so much sense...
the surgeons tell me the spine wouldn't have enough support
if rods could bend...but maybe it won't be rods...maybe it will
be small little rod pieces interspersed with pivot pieces...
someday...????

jess

LindaRacine
06-01-2012, 10:50 AM
Hi Jess...

Artificial disc replacement has been around for at least 10-15 years. Unfortunately, the results have only been OK, and most insurance companies deny coverage. I have known of 2 people who have had ADR below a scoliosis fusion, and both had drastic results. One ADR, Kineflex-L, is made of all metal, and there was some hope that it might work in conjunction with a scoliosis fusion, but I think that's no longer being discussed.

--Linda

jrnyc
06-01-2012, 11:06 AM
i get that discs with people who have scoli cannot be handled the
way people without scoli can have surgery....
i know someone who had this kind of replacement but he does
not have any other back problems..he did great after the surgery....

what i am questioning is whether or not someday, there will
be rods that can bend...as the surgeon said "the spine is meant
to move and bend..." asking whether the idea of a "bendy" disc
will someday lead to a "bendy" spine...
i understand that spinal fusion is now the best scoli patients
have at this time...every surgeon has told me that bendable
rods wont support the spine enough...but i am looking into the
distant future...
the disc relacement on TV was invented by a German gymnast
who wanted something that bends...she became an orthopedic
surgeon, according to Dr Light...makes sense that someone
who was a gymnast wanted a bendable disc replacement...
and when looking up ADR, i found all the places note that no patient
with scoli is a candidate for this procedure...

jess...& Sparky

LindaRacine
06-01-2012, 11:31 AM
i get that discs with people who have scoli cannot be handled the
way people without scoli can have surgery....
i know someone who had this kind of replacement but he does
not have any other back problems..he did great after the surgery....

what i am questioning is whether or not someday, there will
be rods that can bend...as the surgeon said "the spine is meant
to move and bend..." asking whether the idea of a "bendy" disc
will someday lead to a "bendy" spine...
i understand that spinal fusion is now the best scoli patients
have at this time...every surgeon has told me that bendable
rods wont support the spine enough...but i am looking into the
distant future...
the disc relacement on TV was invented by a German gymnast
who wanted something that bends...she became an orthopedic
surgeon, according to Dr Light...makes sense that someone
who was a gymnast wanted a bendable disc replacement...
and when looking up ADR, i found all the places note that no patient
with scoli is a candidate for this procedure...

jess...& Sparky

Hi Jess...

I'm not sure I follow. The ADRs act almost exactly like a normal disc, in that they allow movement of that segment (including bending).

jrnyc
06-01-2012, 11:46 AM
my question is...
why can't they....eventually...make something like that...but
looonngg...for the entire spine...bendy...so the spine could bend
in several different spots, wherever the ball bearing pivot type
thingies were placed...many small rods, many small pivot pieces...
instead of needing full fusion....
i am envisioning a different future for scoli surgery...that is all...
not in my lifetime...but i bet something like it will be developed...
don't know who the guinea pig patients would be...think i would
volunteer if i was around...i predict new things will be developed...

guess i am just a little jelaous of those with bad discs who do
NOT have other back problems, who can have disc replacement
that does not involve fusion....surgeon called old style replacement
"somewhat arachaic"
NOT to insult anyone...but would anyone volunteer for knee replacement
that fused the whole knee...never to bend it again....???
just a thought...

jess

LindaRacine
06-01-2012, 12:14 PM
Sorry, I was confused because I think you're talking about 2 different issues.

There are plenty of implants in development that might allow for more movement. I think the problem so far has been that anything that allows bending between segments, would be suceptible to the forces of bending the wrong way in people with scoliosis.

I get the jealousy thing. It truly sucks to have scoliosis, as there really is no treatment that will make us anywhere near normal. I try not to dwell on it, as dreaming about a normal spine is fruitless.

--Linda

jrnyc
06-01-2012, 03:58 PM
thanks, Linda...
i do not dream about a normal spine, though....
i think i do dream, occasionally, about a surgery that could
allow for a more normally functioning spine....someday
husband thinks it will sooner than i predict...

jess

Susie*Bee
06-01-2012, 04:04 PM
Jess- even though I have limitations with 15 levels fused, it has become 2nd nature to me now after five years. Yes, there are things I can't do but I've moved on and accepted it. I look forward to each day with the joy that life brings me. I am able to do so many things. To everyone who knows (or doesn't know) me, I appear to be a normal person, functioning well in almost every aspect. I am pain free. I look good. I feel alive and well. No, I cannot bend the way I used to. No, I cannot carry heavy loads. But I can do almost all the things that I want to do. Besides, when one door closes, many others are waiting for you to open them. Try not to get bogged down by this "not having a normal functioning spine" too much. Life isn't fair in so many ways. We are survivors! We aren't succumbing to cancer or some other dread disease. We have a deformity, but one that can be worked with if we choose. When I first ACTUALLY let those words sink in, DEFORMED, they stung. But everyone has something in their lives that is going to bite them.

You asked about anyone choosing to have their knee fused. That is something I don't know about. But this week my friend's sister had to have her wrist fused. That sounds dreadful to me-- to never be able to bend your wrist again. There are not medical answers for everything. Medical science is advancing by leaps and bounds all the time. My grandfather was a surgeon and taught surgical pathology at UCSF a long time ago. When he first studied medicine they had not even developed the blood typing system yet. What great strides have been made! But we can't wait around for that "panacea" of perfection before we take the step that will help us or it may be too late. Sometimes it's time to reach for the best there is at this time and build your life around it. I am extremely pleased and happy with my results. I am strong and able. I have limitations, but I have joy in my life, faith in my Lord, and I am so glad I took that step forward 5 years ago.

rohrer01
06-01-2012, 04:34 PM
I actually brought this topic up on another thread after I watched a video of a cadaver spine that had been filled with these artificial discs. I wondered if there could be a setting on each individual discs so as to prohibit the spine from bending back into its old curve pattern. The more I think about this, though, the more complicated it becomes in my mind. First, older people have the wear-and-tear on the actual vertebrae and they become misshapen over time. That would have to be fixed by shaving and reshaping each and every vertebra. That would be excessively bloody and take a LOT of time. Then you would still have to worry about the natural, or should I say unnatural, forces that a scoliotic spine has in relation to ligaments, tendons, and muscles constantly putting pressure on the prosthesis until it finally gives way and needs to be replaced. Even artificial knees, hips, etc. have a "life expectancy" on them before they need to be replaced.

So after thinking about it for awhile, I came to the conclusion that, yes, better things will come. But where we are now with spinal fusions is so much better than what we had 20 or 30 years ago. Look at what is being accomplished with kids and teenagers with VBS and tethering!

I was talking to my mom about that yesterday as we were looking back at time and wishing she had taken me to Shriner's as she was offered. I told her that these things that they are doing now are very new technology and there probably wouldn't have been anything they could have done differently. MAYBE they would have opted to fuse me, but then again, maybe they wouldn't. I think when it boils right down to it, we need to just take advantage of the technology available to us in our present.

I guess the only time I would be tempted to put things off to wait for a technological advance would be: 1. I wasn't in an urgent situation, and 2. The new technology had already been invented and tried successfully but is still waiting for the final FDA approval (or whatever agency deals with these things). So that's my take on it. It's exciting news for sure. But it doesn't benefit us scoli's, YET. =)

jrnyc
06-01-2012, 05:18 PM
hi Susie Bee
i do not believe i am "bogged down" in anything...
sorry if my hopes for the future of scoli surgery just
sounded like venting...
it really was primarily hope for new inventions in surgery...
but i personally am not waiting for new technology...
you seemed to get that impression...
it is needing T3-sacrum with pelvic fixation
that has stopped me from having surgery...i would not
wait for improvements i think will NOT come in my lifetime...

i do think tht my severe lack of cortisol is causing me to feel
so frustrated, so exhausted ALL the time, that things that i have
learned to take in stride are getting to me now, when they didnt
cause me such annoyance before...
and i do have some idea of how much worse things could be..
several of my close relatives died of cancer...including my mother...
so i am well aware that there are others worse off...

i did believe that this forum is a place where people, as Linda
wrote, understand the sometimes frustrating aspects of living
with this medical condition, without getting what could sound
like a lecture ...
at least, i am glad Linda indicated that she does...
and for me, i have never called myself "deformed"...
but to each their own...

i am very glad you had great surgical results and healing...

jess...& Sparky

Susie*Bee
06-01-2012, 06:47 PM
Jess-- I am so sorry I offended you, as I did not intend to. "Bogged down" was a poor choice of words. It is all a big struggle. Over the years I've been on here-- and I haven't posted much in the past couple of years, but before, I always tried my best to be an encourager. I had quite a struggle building back up from my surgery, but did. I am a melanoma survivor and have had 4 bouts of lesser types of skin cancers. I lost my father and grandmother to cancer and my mother to bacterium avium along with some other diseases.

In the past I always took a strong stance that the forum was to be a place where we should all feel free to vent and share. I'm afraid that what I intended as a positive approach to acceptance of some limitations of the surgery were taken in the wrong way by you, because of the way I worded what I said. I apologize. That's the problem with the written word rather than dialogue between two people where you can have a back and forth conversation.

I am sorry for your lack of cortisol and your suffering-- and understand your hope you have for a better future. Best wishes as you continue with your search for relief and help.

jrnyc
06-01-2012, 07:08 PM
thank you Susie Bee
apology accepted...whole thing forgotten....

hope you have a great wkend...

jess...& Sparky

Tableone
09-19-2014, 03:08 AM
Linda:

Can you please elaborate about the two people you know who had the "drastic results" from artificial disc replacement below their scoliosis fusions? Thank you!




Hi Jess...

Artificial disc replacement has been around for at least 10-15 years. Unfortunately, the results have only been OK, and most insurance companies deny coverage. I have known of 2 people who have had ADR below a scoliosis fusion, and both had drastic results. One ADR, Kineflex-L, is made of all metal, and there was some hope that it might work in conjunction with a scoliosis fusion, but I think that's no longer being discussed.

--Linda

LindaRacine
09-19-2014, 09:35 PM
Linda:

Can you please elaborate about the two people you know who had the "drastic results" from artificial disc replacement below their scoliosis fusions? Thank you!
Sorry, but it's been far too many years since I heard about them. I can tell you that I'm relatively certain that I heard about them on the old MIT list (the predecessor to this forum). If you do a search on something like MIT scoliosis artificial disc, you might find them.

--Linda

edouard
07-24-2015, 10:33 AM
watched The Doctors today...they showed disc replacement that moves...
for ONLY disc replacement...no scoli involved...
the replacement part moves...it has 2 parts that fit together
and they pivot...so the body can move after the disc replacement
part is inserted during surgery....this particular patient had
replacement of a disc in neck....at C5-6 disc

when will something like this be able to be used for scoli surgery?
the surgeon...from SF Spine Center...Dr Kenneth Light...
said it means the body will be mobile, because humans "are
supposed to be mobile...we are supposed to move and
the SPINE is supposed to move"
he mentioned the "old way" of fusing the discs...
said this new way is better because it preserves movement and
bending...called old way of fusing "archaic"

this is not an attack on fusion...thsi is a question about the future
of scoli surgery...
it makes so much sense...
the surgeons tell me the spine wouldn't have enough support
if rods could bend...but maybe it won't be rods...maybe it will
be small little rod pieces interspersed with pivot pieces...
someday...????

jess


That solution is coming even is disk still not move, i post about that in another subject and will put it here too

Look at aurora spine http://www.auroraspine.us/

This is what i call clever fusion with strong derotation, for information , aurora spine patent -> http://www.faqs.org/patents/app/20130296940

in those pic we can see it is planned for multiple vertebras which can only concern scoliosis :

-> http://www.faqs.org/patents/imgfull/20130296940_12
-> http://www.faqs.org/patents/imgfull/20130296940_06
-> http://www.faqs.org/patents/imgfull/20130296940_05

Aurora spine is new startup (2 years old only)

For me it is obvious that this new way to fuse (without screw) is really nice
Also derotation will be full because as you can see they use the back of the vertebra to do it.

But with this device the disc are also removed an replaced by atificial disks that will fuse in a clean way -> that one http://www.auroraspine.us/affinity.php

LindaRacine
07-24-2015, 09:34 PM
That solution is coming even is disk still not move, i post about that in another subject and will put it here too

Look at aurora spine http://www.auroraspine.us/

This is what i call clever fusion with strong derotation, for information , aurora spine patent -> http://www.faqs.org/patents/app/20130296940

in those pic we can see it is planned for multiple vertebras which can only concern scoliosis :

-> http://www.faqs.org/patents/imgfull/20130296940_12
-> http://www.faqs.org/patents/imgfull/20130296940_06
-> http://www.faqs.org/patents/imgfull/20130296940_05

Aurora spine is new startup (2 years old only)

For me it is obvious that this new way to fuse (without screw) is really nice
Also derotation will be full because as you can see they use the back of the vertebra to do it.

But with this device the disc are also removed an replaced by atificial disks that will fuse in a clean way -> that one http://www.auroraspine.us/affinity.php

I'm not an engineer, so it's impossible for me to know the answer, but I suspect they'll find that these implants break when used in deformity patients.

I'm not clear what you mean by "in those pic we can see it is planned for multiple vertebras which can only concern scoliosis", but multi-level fusions are done for lots of things besides scoliosis.

edouard
07-25-2015, 03:54 AM
Right multiple vertebras fusion is not limited to scoliosis but can concern also scoliosis.

For breaking i don't think as they fuse also the disc strongly with artificial disks + put the implant device at the back of vertebras, the only constraint i think (but not sure it is my feeling believe) is that to use such solution the spine must be really straight first (may be to 10 minimum) if not difficult to use artificial disk so in severe scoliosis may be impossible to be used, in my case may be but not sure too as I am borderline in term of curvature.

I contacted aurora, they will send me brochures as i see my surgeon next week i will ask him about that, also for magec that i contacted too.

But the purpose of my visit is to know if i have to compensate first my leg difference and if i can have a brace once compensated that can correct a minimum my curve as i believe in my case the scoliosis comes from my leg difference.

For surgery i plan to do it later but i am not really attracted (having choice now to wait may be not the case in few years ) in having lot of screws, the fact to straight the spine in few minuts and current fusion that's why i am trying to look for another kind of surgery already now with same purpose correcting the curve and stabilise it with fusion as i believe that non fusion solution may be will come in 10 years not before (with the coming of new materials, not titanium i think)