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patty22
08-29-2011, 10:47 AM
Ok,

So I'm not very good at limiting myself to what information I read about scoliosis surgery. I want to know the good and bad and so far I've come up with more bad than good it seems. Although I read that many people (who were previously in a lot of pain) don't regret their decision about having the surgery, it just seems that down the road there is always some kind of complication (revision surgery, herniated disks, degenerated disks, rods hurting, etc. etc.). I feel like the surgery brings more problems! In my case, I don't have any pain but a rapidly progressing curve (2*/year) and am currently at 54*. I just can't bring myself to put myself through this - it's worrying me so much. I will talk to my doctor about all my concerns but is there truely anyone out there that is totally 'fine' after the surgery and doesn't need any more intervention or doesn't have significant pain anymore?

Sorry for my rant but I'm at my wit's end :(

titaniumed
08-29-2011, 12:18 PM
Patty
Yes, there are complications....the “C” word that we all need to be aware of and that’s what makes it scary. I was a Luque candidate in 1974, back in the dark ages and was an active skier so now you can see why I waited. Things today are so much better than years ago, the pedicle screw systems do address rotation and are far superior than the Harrington system.

I had twin 50’s when I was 16, and they held for many years. My extreme pain events started when I was around 41, and if I could do it over again, I would have done my surgeries around that age. I did lose my gall bladder about a year after my scoli surgeries, a rare scoliosis complication.

Since I was 15, I knew that I needed scoliosis surgery.....I knew for 34 years. Yes, we worry, but I wasn’t going to let it drive me crazy, I moved west, skied big mountain which includes insanely high jumps, and lived my life. I think that I might have overdid it, and might have triggered my lower spine problems, but had a blast doing it. Extreme pain made my decision much easier for me. When scoli’s don’t have much pain and have surgery, their satisfaction rates are lower.

There are many 30 year old ladies with 50’s like yourself that start thinking that a decision HAS to be made right now, and it doesn’t. You most likely can hang for another 10 or 20 years like myself, and maintain like many of the other non-fused scolis here.
You can find a Chiro, to do some adjustments and shoot a coronal x-ray every once in a while to keep an eye on your curves. You can start scuba diving like myself, to help de-weight....(learn to love sharks!) lol Ocean therapy is great stuff! Live your life, have your kids.

Stop stressing, its not worth it. Exercise, and learn how to breathe deeply...real deep. Your going to be fine.
BTW here is a video of me skiing last January 1st.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=email

Ed

Doreen1
08-29-2011, 12:26 PM
Patty
BTW here is a video of me skiing last January 1st.
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=email

Ed

Hi Ed,

Your video looked like a lot of fun maybe because, for me, it wasn't straight down a slope. I skied a few times but got very scared the last time because I hit an ice patch and didn't know how to stop. My hubby LOVES skiing.

What were your pre/post op degrees?

Warmly,
Doreen

debbei
08-29-2011, 12:56 PM
Ok,

So I'm not very good at limiting myself to what information I read about scoliosis surgery. I want to know the good and bad and so far I've come up with more bad than good it seems. Although I read that many people (who were previously in a lot of pain) don't regret their decision about having the surgery, it just seems that down the road there is always some kind of complication (revision surgery, herniated disks, degenerated disks, rods hurting, etc. etc.). I feel like the surgery brings more problems! In my case, I don't have any pain but a rapidly progressing curve (2*/year) and am currently at 54*. I just can't bring myself to put myself through this - it's worrying me so much. I will talk to my doctor about all my concerns but is there truely anyone out there that is totally 'fine' after the surgery and doesn't need any more intervention or doesn't have significant pain anymore?

Sorry for my rant but I'm at my wit's end :(

I'm coming up on my 3-year postop anniversary.

So far (knock on wood), I am as fine as I think I can be, I don't need any intervention or any other surgery, and have no significant pain. The pain that I do get periodically is muscle spasms, and I know how to deal with them. Now, I don't know what the future will bring, and as big a worrier as I *CAN* be, I don't. I try to enjoy my life as I am.

THis is a hard decision that only you can make for yourself.

titaniumed
08-29-2011, 01:23 PM
Doreen

I had 2, 70 degree well balanced curves. I never asked my surgeon what my post Cobbs were, I didn’t think that it mattered all that much. They look like they are 25-30 degrees each.

If you look at my coronal x-ray in my sig, you will see that one screw was omitted at T7. They are digital so you can zoom and see the wedging that can occur.....there wasn’t a clear trajectory.

This is the best “deep” powder video I have found, and why I moved to Tahoe. The deeper the better. You would think I was posting in a ski forum. LOL The local skiers here wrote an article a while back and named me “the trooper” since there are not many fused hard core skiers out there.....it’s a very rare thing. I’ve skied 93 areas over the past 50 years. I’m not in this video.
http://www.youtube.com/watch?v=HGd4jatccUM

Ed

JenniferG
08-29-2011, 03:52 PM
Patty, I think you are only seeing the less perfect outcomes because there are plenty of excellent outcomes and I would say these are the majority. But at a progression of 2 degrees per year, you don't have to make this decision now, as Ed says. It sounds like you are not ready.

My suggestion is to make a conscious decision to get and stay fit, which won't halt the progression, but will make you feel good, and reduce any pain you are having. It worked brilliantly for me - just before surgery, but I went ahead with it and have no regrets. I'm 2.5 years post op and I had my first "pain" last week when I overdid it on the elliptical. I had a sciatic-like twinge for a couple of days. But anybody, scoliosis or not, gets these hiccups.

There are plenty of us out there, extremely happy that we found the courage (and it does take courage) to have the surgery. For me, it was the best thing I ever did for myself. But we are all different and it sounds to me, like you're just not ready at this point. I know it's hard. You will know when the time is right.

peachrush7
08-29-2011, 09:00 PM
Just to throw my 2 cents in, surgery is not a fix. It helps us prevent further damage to our bodies, and hopefully provide a better life in our future. However, we will always have scoliosis, and because we have it, it will always be a part of our lives. We are either post-op or pre-op (or maybe never-op)...but we will always need to stay on top of what is going on with our spine. It's hard to accept, and it's frustrating to deal with a disease that is not very well understood, or explained to those who live with it. Most of us will at some point have at least one surgery in our lives related to our scoliosis. It's just the reality of scoliosis. I don't think it should overwhelm your thoughts or mind...it's just something to be aware of and deal with when your back is in a place where it needs to be looked after a little more aggressively.

I remember feeling like choosing to have this surgery was like buying a house without ever getting to see inside it, know when it was built, or even how many rooms it had. You have to shell out everything upfront you have got to withstand it, without knowing for sure whether or not it will in fact be what you need or want.

I think for most of us who are (or were) getting worse (ie. curves continuing to progress at a steady rate) and/or in pain, surgery comes into focus a lot earlier. But it is not a decision to take lightly, and it took me over a year to finally pull the trigger. I don't regret it one bit.

I would have most likely been at over 62 degrees by the time I was 39, and I really didn't want to have to stop my life at that point to have the surgery. I didn't (and don't) have kids yet, and I was healthy, strong, and had an amazing surgeon who was willing and ready to do the surgery. But even with all that in my corner, it was STILL the scariest, hardest thing I've ever decided to do.

I read all the same horror stories etc as you, and believe me, they gave me pause. But at the end of the day I had to decide what was best for me and my future. You can read all about my reasons on my blog, as this post is already too long lol.

We're here, and we've all been scared, so don't worry about asking questions!

Pooka1
08-29-2011, 09:53 PM
I will talk to my doctor about all my concerns but is there truly anyone out there that is totally 'fine' after the surgery and doesn't need any more intervention or doesn't have significant pain anymore?

Yes there are people who are not expected to need any further surgery after the one operation and are fine as far as anyone knows and as far as the surgeons can extrapolate from all the data in hand. Of course the future has to play out to confirm that.

Please ask your surgeon about your particular case. Ask him about the other cases with similar length fusions in similarly aged patients. It's no guarantee you will be like them but it's a start.

Where is your curve? Based on what our surgeon has said and what I have read, certain thoracic curves that are corrected enough fall into this category. Also, many if not most fusions extending to the pelvis probably are one-stop shopping as far as the testimonials go.

Good luck.

Sharon

jrnyc
08-30-2011, 12:16 AM
i have a question about the statement about always having scoliosis...
even after surgery.....i am referring to full spine length entire back fusions now...

do people who have loooong full fusions...like TiEd, with fusion T2-sacrum...does he still have scoliosis...? the dictionary defines scoli as abnormal curvature of the spine....
how can Ed still have curves with a fusion like that...?

it's just a question...
personally, my own opinion is that someone with a full...i mean really full length fusion,all the way down, is more like post scoli in my own view....where can a spine fully fused
curve?

maybe it is semantics...

jess

LindaRacine
08-30-2011, 01:04 AM
Hi...

There's absolutely no hurry to have surgery. And, since you don't have pain, I think it's wise to put it off for now. I think you are at a relatively high risk of having your curve increase. However, having the surgery at 40, 50, or 60 isn't all that different from having the surgery at 30. I've said this so many times that I feel a little like a broken record, but adult patients who have the surgery when they don't have pain seem less satisfied with their outcomes than those who do have pain.

Regards,
Linda

Pooka1
08-30-2011, 05:27 AM
i have a question about the statement about always having scoliosis...
even after surgery.....i am referring to full spine length entire back fusions now...

do people who have loooong full fusions...like TiEd, with fusion T2-sacrum...does he still have scoliosis...? the dictionary defines scoli as abnormal curvature of the spine....
how can Ed still have curves with a fusion like that...?

it's just a question...
personally, my own opinion is that someone with a full...i mean really full length fusion,all the way down, is more like post scoli in my own view....where can a spine fully fused
curve?

maybe it is semantics...

jess

I agree that folks who need no further surgery as in the case of many if not most fusions to the pelvis are pretty much done with surgery and perhaps even all treatment. That assumes they don't develop kyphosis above the fusion of course.

Also, folks with curves that are corrected to <10* do not technically have scoliosis because the definition is a lateral curvature >10*. My one kid is in this category... the structural curve is <10* and the compensatory curve pretty much disappeared when the structural one was corrected. I think she would have to be considered cured on this basis. My other kid still has a fused curve and a compensatory curve >10* so she still has scoliosis though it has been stabilized, presumably for life but we will see. If for life then she was cured also.

peachrush7
08-30-2011, 10:51 AM
i have a question about the statement about always having scoliosis...
even after surgery.....i am referring to full spine length entire back fusions now...

do people who have loooong full fusions...like TiEd, with fusion T2-sacrum...does he still have scoliosis...? the dictionary defines scoli as abnormal curvature of the spine....

jess

My point was that if we have the surgery, we may no longer have curves, but we will have hardware that is in our spines that may or may not cause problems down the road. So while we may not fit the "dictionary" definition of scoliosis any longer, we still have spines that are not "just like everybody elses". Also, idiopathic scoliosis is genetic, and therefore it (as of yet) cannot be "cured". It can be treated and slowed down, even stabilized, but it never "goes away".

I just think it can be unwise to approach the surgery with the mindset that it will "fix" us or make us "normal". We have great lives, mine personally has vastly improved because of the surgery...but it is not average to not be able to bend or arch your back. We trade one condition for another, hopefully better one.

Terrik
08-30-2011, 01:15 PM
Hi...

There's absolutely no hurry to have surgery. And, since you don't have pain, I think it's wise to put it off for now. I think you are at a relatively high risk of having your curve increase. However, having the surgery at 40, 50, or 60 isn't all that different from having the surgery at 30. I've said this so many times that I feel a little like a broken record, but adult patients who have the surgery when they don't have pain seem less satisfied with their outcomes than those who do have pain.

Regards,
Linda

Hi Linda,

I was curious about your comment about adult patients who don't have pain pre-surgery not feeling as satisfied post-surgery. I have mild pain in my lower back, but have either gotten used to it or it just isn't a daily occurence. Yet, my curves as stated in a previous thread, are 50 on each side of the S, 58 Lumbar Lordosis, and 55 Thoracic kyphosis. I am leaning (I guess a perfect scoli word...)toward having the surgery next fall and weighing everything out. Have you found that a person who doesn't have alot of pre-pain experiences more post pain? And if so, why does that happen? Sorry if I am putting you on the spot - just trying to understand and learn as much as possible. I was told by Dr. B at HSS that it would not be a total fusion at this point. Any insight would be helpful. Thanks Linda.

Warm regards,

Terri

patty22
08-30-2011, 01:52 PM
Hi Linda,

I was curious about your comment about adult patients who don't have pain pre-surgery not feeling as satisfied post-surgery. I have mild pain in my lower back, but have either gotten used to it or it just isn't a daily occurence. Yet, my curves as stated in a previous thread, are 50 on each side of the S, 58 Lumbar Lordosis, and 55 Thoracic kyphosis. I am leaning (I guess a perfect scoli word...)toward having the surgery next fall and weighing everything out. Have you found that a person who doesn't have alot of pre-pain experiences more post pain? And if so, why does that happen? Sorry if I am putting you on the spot - just trying to understand and learn as much as possible. I was told by Dr. B at HSS that it would not be a total fusion at this point. Any insight would be helpful. Thanks Linda.

Warm regards,

Terri

I'm also curious about this.

golfnut
08-30-2011, 02:31 PM
I did not have pain pre surgery unless I had to stand in one place for an extended period of time. I wasn't happy about needing surgery, but have not regretted it. I was 60 and was told that my prognosis wasn't good without surgery. Besides loving the fact that my appearance is so much better, I feel that I will be more active in my later years without a curve that progresses.

CHRIS WBS
08-30-2011, 04:45 PM
However, having the surgery at 40, 50, or 60 isn't all that different from having the surgery at 30.

I think most experts would disagree.
http://drlloydhey.blogspot.com/2011/02/happy-valentines-day-scoliosis.html

Patty,

I’m one of those who are TOTALLY fine after surgery. I underwent a 12-hour posterior surgery over three years ago at age 59. It was a really rough surgery for me at that age. I did very well post-op however, and my only regret is that I did not have surgery at least 10 years sooner before my deformity became so significant. You younger people are fortunate to have advanced surgical technology to your avail. I wish this technology was around when I was your age. By the time I went into surgery I had a big stiff curve of nearly 80 degrees but not much pain. I got only a 50% correction, and when I asked my surgeon at my three-year post-op visit why I did not get a better cosmetic outcome, he said it would have required a staged surgery involving a big anterior incision. That would have significantly increased the risk for complications.

I would suggest reading through Dr. Hey’s blog. I think you will find yourself becoming less fearful. And please get opinions from at least two well-experienced adult scoliosis surgeons. An excellent surgeon is key to a great outcome. And while complications can occur even with the best of surgeons, such occurrences are much lower in younger adults.

jrnyc
08-30-2011, 05:22 PM
i think the older the patient, the more difficult the recovery COULD
be...
i know i do not heal as fast now...from anything...as i did when younger....
and...the greater the chance of more back injuries...i herniated discs at age 50...
prior to that, my scoli was quite manageable, and i worked out 3-4 times a week..
pain was not a daily thing then, only occasional with rainy weather, etc...
but i do not really regret not doing something years ago, as the technology wasn't as good
then...
now, i am trying to talk myself into surgery...to the sacrum (pelvic fixation)...
it is obvious, at least to me, that some patients here do really well, and some do not...
sometimes it is not at all clear as to why!

jess

peachrush7
08-30-2011, 05:24 PM
I think most experts would disagree.
http://drlloydhey.blogspot.com/2011/02/happy-valentines-day-scoliosis.html

I would suggest reading through Dr. Hey’s blog. I think you will find yourself becoming less fearful. And please get opinions from at least two well-experienced adult scoliosis surgeons. An excellent surgeon is key to a great outcome. And while complications can occur even with the best of surgeons, such occurrences are much lower in younger adults.

Thanks for posting that link! It's funny, that was almost the exact speech I got from my surgeon (without the why'd you wait so long lol). He didn't try to push me into the surgery by any means, he was fine with me waiting until I got to 60 degrees. But when I asked him what the benefits of having it now versus later, he gave me all those same reasons. He also said every year that I waited, it would become harder on my body. He also said that because I had a double major curve, the longer I waited, the more likely I would need a bigger (ie. A&P) surgery.

I'm SO glad I did it now. I honestly wish I had had it done when I was done growing, though I doubt any surgeon would have done it then. It was so frustrating to go through 3 previous surgeries that could have been avoided if I had already been fused. But anyway, there are pluses and minuses to both sides, and you have to be prepared. It's not something to rush into, especially if you have time to consider it. Like I said earlier, it took me a little over a year to finally decide to go ahead and have it now.

I had no real back pain to speak of prior to surgery, mainly leg pain from a herniated disc. I have no back pain now to speak of either (and I'm only 8 months post-op)...but my leg pain is greatly improved, and I generally just feel better than I did pre-op.

Pooka1
08-30-2011, 06:51 PM
I think most experts would disagree.
http://drlloydhey.blogspot.com/2011/02/happy-valentines-day-scoliosis.html


Well given those reasons he states, I think he is emphasizing the need to not wait on TL curves in particular. That said, he does mention age-related recovery also.

LindaRacine
08-30-2011, 07:59 PM
Hi Linda,

I was curious about your comment about adult patients who don't have pain pre-surgery not feeling as satisfied post-surgery. I have mild pain in my lower back, but have either gotten used to it or it just isn't a daily occurence. Yet, my curves as stated in a previous thread, are 50 on each side of the S, 58 Lumbar Lordosis, and 55 Thoracic kyphosis. I am leaning (I guess a perfect scoli word...)toward having the surgery next fall and weighing everything out. Have you found that a person who doesn't have alot of pre-pain experiences more post pain? And if so, why does that happen? Sorry if I am putting you on the spot - just trying to understand and learn as much as possible. I was told by Dr. B at HSS that it would not be a total fusion at this point. Any insight would be helpful. Thanks Linda.

Warm regards,

Terri
Hi Terri.

I don't think we know for certain, but I think it's mostly about expectations. Regardless of the fact that adults are told that there's a good chance they'll never be pain-free, I still hear from people all of the time who seem to be surprised that they've got pain. (I'm not talking, here, about people who experience one of the complications such as adjacent segment disease.) Fusing most of the spine into one long column is bound to cause some issues in most people.

I had a lot of pain when I had my revision surgery in January, so I am delighted now, even though I have some pain on most days. I hope that will always be the case, and that my expectations will continue to be realistic. When I talk to people who are super enthusiastic about their results, they'll often confess that they have some pain, at least occasionally. If those people had gone into surgery with no pain, I'm pretty sure they wouldn't be quite so enthusiastic about their outcomes.

Somewhere in the neighborhood of 80% of adults will have at least occasional back pain, so it's no surprise that many people have long-term pain post-operatively. So, if you decide to go for the surgery, my advice would be to keep your expectations realistic.

Regards,
Linda

Pooka1
08-30-2011, 08:04 PM
Somewhere in the neighborhood of 80% of adults will have at least occasional back pain, so it's no surprise that many people have long-term pain post-operatively.

If you are referring to the general (non-scoliotic) population, the figure I have seen is ~85% will have back pain of such magnitude at some point that they go to a doctor for it. I hit that point at 31 with a herniated disc for example and it is haunting me still.

If the 85% claim is true then the backdrop against which fused patients compare themselves is not bunnies barfing rainbows. :-)

peachrush7
08-30-2011, 08:44 PM
Somewhere in the neighborhood of 80% of adults will have at least occasional back pain, so it's no surprise that many people have long-term pain post-operatively. So, if you decide to go for the surgery, my advice would be to keep your expectations realistic.

Regards,
Linda

EXACTLY! Expectations are so important!!! I think part of the reason I feel so great now is that I expected it to be a lot worse lol, and I was so scared of the surgery making the leg pain I did have worse. Pain was not on my top reasons for doing the surgery. My surgeon was very clear and stern with me about the fact that there was absolutely no way to promise that it would alieve my pain in any way. He hoped that it would, it seemed logical that it would, but there was no way to know for certain. That was why I couldn't use it as a reason for having the surgery now or later. I did think it seemed logical that if I waited longer, my pain would continue to get worse on its own (since it was continuing to get worse every month), and if I had the surgery it could possibly either slow down or halt the rate in which my pain was increasing, but I also knew there was the possibility that it could actually make it worse.

When deciding to have the surgery, I had to as much as I could, leave pain out. My number one reason was that my curves were continuing to progress, regardless of the pain I was in.

I was very very worried about the pain becoming worse, but I knew my pain was getting worse anyway. What could at least be stopped was my curves and growing ribhump and funky shoulders.

Expecting this surgery to "fix" your back, so you never have to think about it again will leave you very disappointed. We have to think about, or take care of our spines as much as we can, whether we are pre or post-op.

I do, however, definitely enjoy not having to think about whether or not to have the surgery lol! =)

Doreen1
08-31-2011, 08:25 AM
I'm trying to keep realistic expectations for when it's time for my surgery. #1 expectation: stop the progression of curves. 5 years ago they were ~40*, now the are T72* and L59*. #2 expectation: relieve some of the pain. I do not hope to be totally pain free as I do not believe that is realistic. If I can get to a point where my every waking moment is not focused on back pain, that will be such a blessing.

Warmly,
Doreen

jrnyc
08-31-2011, 10:23 AM
hmmmph...supposedly, or at least, on last visit to Dr Lonner, when he measured my curves, he said they seemed fairly stable for the time being...they hadn't really changed...and that iscompared to about 4 years prior measurements....
(i do realize that doesn't rule out the possibility of progression sometime in the future)....
however, he said my discs seemed worse....
Dr Lonner did say he believes i could get "very good results" from surgery...he also said he
thought i could also get quite a bit of pain relief, though he pointed out that he could not
promise that....
right now, i do believe a lot of my pain is coming from my "degenerative disc disease"
(quoting the surgeon's phrase)...maybe that is why the sacroiliac joint injections have given
me relief from lumbar pain, while no other treatments relieved that area of pain....not the
3 epidural shots, nor the facet block, not the nerve ablation, nor any other shots we tried
in the lower spine....

i would definitely be hoping for pain relief from the disc problems if/when i have
surgery....though i know that would not be a sure thing....

jess

Terrik
08-31-2011, 10:30 AM
What is pushing me more toward going for the surgery, is not so much the pain, but the fact that the curves have progressed and that my bones are thinning. I think waiting too long will only increase the curve progression and the bone condition, which might make having the surgery when it is absolutely necessary, a huge problem with complications.

I agree that pain will be there whether we do the surgery or not, but if it is manageable pain, we can all deal with it. I appreciate the clarity on that topic - thanks Linda and others.

Another question I have and maybe I need to create a new thread - if you are not totally fused on your first surgery, is revision surgery almost a given? And if so, is the recovery and surgery as complicated as the initial one? e.g - if not fused to your sacrum first, and then need to have that done later, is the second surgery as intense in terms of recovery, mobility (being that it is a smaller part being fused)?

Thank you again for your answers and opinions. Gratitude is a small word, but it contains alot of heart.

jrnyc
08-31-2011, 10:46 AM
Rebecca...i do believe idiopathic scoli means cause unknown...if it were genetic, then we
would know the cause was inheriting it....or did i misunderstand what you said in your
post?

so glad you had great results from your surgery!

jess

Karen Ocker
08-31-2011, 11:57 AM
The areas that are fused have the discs removed in this segments and bone material inserted. Therefore tthose discs will NEVER bother you again. Discs below the fusion are left in place and can degenerate.

jrnyc
08-31-2011, 12:07 PM
i thought they put metal inside instead of the discs...."cages," the surgeon called them....?

jess

peachrush7
08-31-2011, 12:36 PM
Rebecca...i do believe idiopathic scoli means cause unknown...if it were genetic, then we
would know the cause was inheriting it....or did i misunderstand what you said in your
post?

so glad you had great results from your surgery!

jess

Yes, it does mean cause unknown, but a lot of research has pointed to scoliosis being caused by our genetics. In my own family my great-grandmother had it, and so did my grandfather on my Dad's side. If I had a daughter, studies have shown it would be very likely that she would have it too. They haven't nailed it down for sure, but there is at least one gene they have identified as either causing or part of causing idiopathic scoliosis, the CDH7 i think. The scolicsore test and the research leading up to it seems to verify that it is indeed genetic. I mentioned the 'idiopathic' part to differentiate it from the other forms of scoliosis that are not genetic, and are related to other spinal problems (ie. congenital or because of osteoporosis or a neuromuscular disease.

http://scoliscore.com/Default.aspx?alias=scoliscore.com/what-is-the-scoliscore-test

Of course, it's still not proven altogether, but my surgeon and many others that I have spoken with have told me the research they've seen and participated in has led them to believe it is genetic.

It's amazing how far the science has come since I was a little kid, back when I started wearing the brace, there was no talk of genetics at all. They had no idea why we had it, or if it was hereditary. Now I know that if I have a biological child at some point that I can test for that marker, and see if they have a strong likelihood of needing surgery at some point. I'm not 100% sure I trust the scoliscore entirely to predict whether a child will ever need surgery, but I think it could be a great tool.

jrnyc
08-31-2011, 02:14 PM
hmmmm...not true in my family...i am the only one with scoli...
and my parents, grandparents did not have it...my sisters do not, etc..

am wondering what the research says....
because idiopathic should be idiopathic...otherwise, it is genetic....
and the cause would no longer be "unknown"
no?
maybe we should start taking a survey of the top scoli surgeons....?

jess

lisazena
08-31-2011, 02:23 PM
Jess,
I believe most surgeons would say it's genetic. Actually my daughter, who also has scoliosis, and I participated in the research that led to Scoliscore and I know that Lonner works with Scoliscore. We swabbed our cheeks and my husband was included in the sample. Then they came back and asked my daughter and I to spit in a cup to get a better DNA sample, but didn't ask my husband. In my own family, my sister also has scoliosis,
and when I spoke to some of my cousins recently I discovered that each one either had scoliosis or one of their kids did. And my parents are no longer alive and were never diagnosed with scoliosis, but I bet they both had it as they both had
horrendous backs. Also, a doctor I saw last year told me that scoliosis is particularly high in certain populations--Jews and Amish. Obviously, this is not exclusive--anyone can get scoliosis.
Lisa

debbei
08-31-2011, 02:32 PM
Jess,
I believe most surgeons would say it's genetic. Actually my daughter, who also has scoliosis, and I participated in the research that led to Scoliscore and I know that Lonner works with Scoliscore. We swabbed our cheeks and my husband was included in the sample. Then they came back and asked my daughter and I to spit in a cup to get a better DNA sample, but didn't ask my husband. In my own family, my sister also has scoliosis,
and when I spoke to some of my cousins recently I discovered that each one either had scoliosis or one of their kids did. And my parents are no longer alive and were never diagnosed with scoliosis, but I bet they both had it as they both had
horrendous backs. Also, a doctor I saw last year told me that scoliosis is particularly high in certain populations--Jews and Amish. Obviously, this is not exclusive--anyone can get scoliosis.
Lisa

I totally agree. All 3 of my kids (who all have mild scoli) participated in that research study. My youngest actually had the scoliscore test a year or so ago, and I spoke with the Dr. who headed the study to get her results. He told me that everyone who has scoliosis has common ancestors. I found that rather interesting. Thank goodness for us, my daughter's score was very low, but we were advised to continue to having her followed until she's grown. Because although their research shows very low scores have practically no risk of progressing to the point of needing surgery, anyone could be the first case.

peachrush7
08-31-2011, 03:19 PM
I find all of the scolicore stuff fascinating. I mean, it could eventually explain why some of us never progress beyond a certain point, an why some of us end up needing surgery.

Also, I think they should stop calling it idiopathic scoliosis now. The name hasn't been changed to reflect the change in the scientific knowledge. Even if we can't point to someone in our family that we know had it, doesn't mean it wasn't somewhere back in our family tree. I think that even though they still don't know a lot of the whys or hows of scoliosis (that is neither congenital or related to a neuromuscular disease), they at least know there are genes linked to the cause.

It is such a strange disease. I wish we could all participate in these studies, I want them to figure more things out...like why someone can go for 20-30 years without progressing, and then BAM progressing 10 degrees in one year. So interesting and frustrating!

Anyway, thanks to you two ladies who were willing to participate in that study...hopefully if God ever blesses me with biological children, especially a girl, they will benefit from your help. Also, 3 of my 4 siblings have biological children already, and they are on the alert for signs of scoliosis, so that if they ever see it coming they can get that test.

livingtwisted
08-31-2011, 04:59 PM
Also, I think they should stop calling it idiopathic scoliosis now. The name hasn't been changed to reflect the change in the scientific knowledge. Even if we can't point to someone in our family that we know had it, doesn't mean it wasn't somewhere back in our family tree. I think that even though they still don't know a lot of the whys or hows of scoliosis (that is neither congenital or related to a neuromuscular disease), they at least know there are genes linked to the cause.

I think its still idiopathic because, it is multifactorial. They know you need to have the gene, but they don't know what triggers it. I'm pretty sure you can be a carrier of the gene, and never develop scoliosis.

livingtwisted
08-31-2011, 05:01 PM
Just to throw my 2 cents in, surgery is not a fix. It helps us prevent further damage to our bodies, and hopefully provide a better life in our future. However, we will always have scoliosis, and because we have it, it will always be a part of our lives. We are either post-op or pre-op (or maybe never-op)...but we will always need to stay on top of what is going on with our spine. It's hard to accept, and it's frustrating to deal with a disease that is not very well understood, or explained to those who live with it. Most of us will at some point have at least one surgery in our lives related to our scoliosis. It's just the reality of scoliosis. I don't think it should overwhelm your thoughts or mind...it's just something to be aware of and deal with when your back is in a place where it needs to be looked after a little more aggressively.

Love this post! It's a great way to look at it.

jrnyc
08-31-2011, 05:08 PM
hey...i certainly stand corrected....
but i think you are right, Rebecca...
they should stop using the term idiopathic...it is very misleading....
and no one in my family has or had scoli...
at least, not recent generations....
i had it in my teens but it wasn't really diagnosed til i was 31....
i do not believe i was born with it....
ballet didn't help, i am pretty sure, nor did carrying heavy books on one hip...


that thing mehera said about carrying the gene but not having scoli is interesting to me....

jess

Karen Ocker
08-31-2011, 07:30 PM
I am fused T-4 to sacrum. I only saw one cage down by my sacrum. The discs are removed, the ends of the vertebra are roughened so that the vertebra for fusion is nourished by the live vertebral bone thus. causing the vertebrae to fuse in time. Hardware is used to support the spine during the healing process and permanently thereafter. My first fusion as a child, an old fashioned technique, weakened over time because there was no hardware to maintain it. Those days the discs were left in place and when they shrunk and deteriorated over time I list the correction. Without hardware a person stayed bedridden, immobilized in plaster for one year. That happened to me at age 14.
Also, hardware enabled superior correction to that of my hinged, pre-op plaster cast.

jrnyc
09-01-2011, 01:25 AM
i do not know if it is because i have degenerative disc disease, but Dr L. said i would need
several cages put in....if/when i have surgery...

jess

titaniumed
09-01-2011, 02:33 AM
Jess

You know I had a bad case of DDD. And you know this also contributes to vertebral disease. Smorls Nodes and degenerative issues that only continue to get worse over time. It might not bad idea to ask Dr L about this and corpectomy and or partial corpectomy in your case. After Dr M did the decompression, and clearing of all that diseased bone, it cleared and relieved all the impingement nerve problems and now I have no pain at all. 5 cages or spacers, through my lumbar spine was what the doctor ordered, and wow! what a difference. I never thought that all my lower end would be fixed completely, it also dealt with all the sciatica and leg pain. Problem solved!

It was like water on a fire, and my fire is completely out.

Ed

jrnyc
09-01-2011, 04:48 AM
i am so glad you are free of that awful disc pain...it is the worst!
i wish the surgeons could fix my discs without having to put rods in...

jess

golfnut
09-01-2011, 11:38 AM
Jess,
I know you have researched this surgery as well as anyone and have also seen the best surgeons. I know it's not my business, but I worry about you waiting too long to take the plunge. The idea of having rods and screws in my back was not a pleasant thought during my presurgery days, but now I just think of it as my "support" for my spine. Fusion to the sacrum isn't as bad as one would think. I imagine you have seen Ed's skiing videos and Jenee's pictures of climbing a temple at 6 months post op. Obviously, it's a major decision to have surgery and there are no guarantees.

debbei
09-01-2011, 12:03 PM
Jess,
I know you have researched this surgery as well as anyone and have also seen the best surgeons. I know it's not my business, but I worry about you waiting too long to take the plunge. The idea of having rods and screws in my back was not a pleasant thought during my presurgery days, but now I just think of it as my "support" for my spine. Fusion to the sacrum isn't as bad as one would think. I imagine you have seen Ed's skiing videos and Jenee's pictures of climbing a temple at 6 months post op. Obviously, it's a major decision to have surgery and there are no guarantees.

I have to agree with Karen.

Jess--honestly, I don't usually know that my (quite long) rods are even there! I know that sounds nuts--how could I not? But I don't feel a thing. I know that not everyone is as lucky as I am, but that's my experience.

jrnyc
09-01-2011, 02:25 PM
thank you debbei and karen, for your warm concern...

what scares me most, and keeps me at the pain management doctors instead of at the
surgeon's office, is the stories of those who didn't do well...the ones who had good
surgeons, SRS surgeons, who followed orders yet still are in some awful kind of scoli hell
afterwards...i do not mean right afterwards, either....it is years afterwards i fear....
(and i know there are no guarantees)...
i also know my knees are bad now, so bending from the knees worries me, too....
my osteopenia worries me...but regardless of all that, if i only needed surgery to L2 or 3, i swear to you i would have had it a few years ago, when i first started seeing Dr
Lonner....
it is the fusion to sacrum/pelvic fixation that freaks me out, no matter how much i try to
tell myself i will be OK...it isn't pain i am afraid of, as i live with degenerative disc
disease...those who have bad discs know what type of hell that can be....
what scares me is being one of the "unlucky" ones, without apparent reason, and
regretting rods in my spine that will fuse my bones forever...
right now i do not know if we are talking T4 or T11 to sacrum...

it is a decision only i can make...i know my age is against me in terms of how long i
can delay a decision....
there are also personal issues as to where i would be able to recover...family issues...
i am thinking about next spring....winter is too difficult in this part of the country....

thanks for the concern....it is much appreciated!

jess

Doreen1
09-01-2011, 02:59 PM
Hi Jess,

I appreciate you being candid about your situation. It's no fun living life worrying about the "What Ifs" that very frequently do not come to fruition. My advice is to consider how has your condition/pain/progression of curves, etc. improved, stabilized or worsened over the past few years. That is how I look at certain situations in my life. 5 years ago when I learned my curves were ~40*, my pain was bad but there wasn't a plan for surgery in my mind at that point in time. For me, I thought I could grin-and-bear-it. I did until June 2011. When the realization hit home that my situation was worsening at a fast clip (see current degrees in my signature line), there is no doubt I am ready for surgery. As it stands, my health has diminished greatly the past few months and I no longer want my daughter and husband to see me deteriorate any further.

You are in my prayers for guidance in your journey.

Warmly,
Doreen

jrnyc
09-01-2011, 03:26 PM
thank you very much for the kind thoughts and prayers...

i hope if surgery is your desire, then it becomes reality for you...
i hope Dr Lenke tells you it is a "go" and you can proceed with the plan you believe is
best for you...

i retired 4 years ago due to pain...
i expected it to get easier, not working a full time job and a part time job anymore,
even though i loved my work very much...it was hard work and physically became too
much....climbing 5 flights of stairs all day long to get (sometimes violent) children who
needed help was hard....it was the physical aspect that was too much...i loved being with the kids as much as i loved being with the addicts nites and wkends....even Dr Lonner
thought i should stop work...
not working did not help stop the pain from increasing, much to my surprise...i think
the discs have gotten worse, because per Dr Lonner, my curves have not increased in
several years...
so...not to say my curves will NEVER increase, but as of now, i can not say i need surgery
due to curve progression...i could say i need it due to discs getting worse....

best of luck
jess

jeneemohler
09-02-2011, 02:43 PM
Jess, I really feel for you, and any others out there in the same place. You have been just trying to balance the reality of your situation, with the uncertainty of an imagined outcome. You wonder if surgery will help you, or if your particular case may be one of those few that don't turn out so well. It is really tough. Sometimes is seems like the evil you know is more tolerable than the evil you DON'T know. I always felt more comfortable living with the pain that I knew and could deal with, rather than risking something worse. I agonized for years and totally understand.

I can't and won't tell you what to do, but I WILL say that when the time comes, I truly believe that you will know it in your gut. This goes for all of you in the pre-op stage. Something just pushes you over the edge. And when you know in your heart that it is finally time to do it, the agonizing just goes away and peace and acceptance follows. It was almost a sort of relief for me, no longer having to worry about whether I should do it or not... Uncertainty drives you insane....

And now look at me!!!!! No regrets at all. (Other than waiting a year too long) Life goes on, and goes on with a better quality of life than before.

The best of wishes to ALL of you during this time of wrestling with the decision.

jrnyc
09-02-2011, 06:49 PM
hi jenee
thank you for such a thoughtful reply...and such kindness...
everything you said is so true, and anyone on forum who is pre surgery or
considering surgery, recognizes the feelings....

thanks for the empathy...much appreciated!

jess

paula
09-04-2011, 02:35 PM
I haven't got time to read the whole thread, but one of the best things I did before surgery was finding a psychologist and discussing my fears with her. Oddly enough, she turned out to have a daughter who had just been diagnosed with scoliosis, so it was an education for her too. She helped me clarify my thoughts, and decide which alternative was best-- in the end I did go with surgery and was remarkably calm leading up to it. I also went on an anti=anxiety medication and would do so again in an instant.

JenniferG
09-04-2011, 05:16 PM
I agree with Paula about the anti-anxiety meds. I am surprised more don't use it. Almost all of us are scared witless about this surgery and for me, it just calmed me down, enabled me to sleep which in turn enabled me to think rationally about the situation. I have to say that exercising had the same affect, but not everyone can exercise to that degree.

Confusedmom
09-08-2011, 10:27 PM
Hi there,

I was 55 degrees at age 30 and now about 80 degrees at age 39. I was in the same boat back then--didn't want to have surgery, not in pain, hadn't had my kids yet, etc. Now I've had my kids, still don't have much pain, but my back is a heck of a lot worse! The surgery is going to be long and complicated -- I will be fused T3 or 4 to sacrum. Still, I'm glad I waited, because I will have had a decade without much pain and without complications. I pretty much have to have the surgery now, as my curve is so big and progressing rapidly, plus I did have a bout of leg pain this spring. Unfortunately, the questions about complications never go away, so I am still just as scared as I was. But it does make a difference feeling like you have to have the surgery, vs. maybe it would be a good idea.

Best of luck to you in your decision!

Evelyn

patty22
09-09-2011, 10:28 AM
wow. I didn't think my ranting of how scared I was would illicit such a response! Thank you everyone for posting. Reading all of your opinions and talking about all those issues really gave me a lot to think about.

Confusedmom - your post really hit me. I am really leaning towards getting this taken care of sooner rather than later. And although we never know what will happen (my #1 fear is long term complications, more surgeries, etc.), I don't want my curves to progress to the point of no return! And I wouldn't mind the greater degree of correction :) (I've got to stay positive!).

I have a second opinon consult with Dr. Hey in Raleigh, NC. I've seen his name pop up several times on this forum and he's not too far away from Charleston. We'll see what he says.

Thanks everyone!

Doreen1
09-09-2011, 11:30 AM
Hi Patty,

I was just reading through some older posts yesterday and several people did not have good things to say about Dr. Hey. You can do a search on his name (upper right corner of your screen) to see comments.

Warmly,
Doreen

patty22
09-09-2011, 02:11 PM
Hi Doreen,

I've searched his name quite a few times and didn't see anything negative. Can you point me to the threads that you see that? You can private message me if you want.

Thanks!

scooter950
09-10-2011, 11:28 AM
wow this is a great discussion, and JeneeMohler -- "Sometimes is seems like the evil you know is more tolerable than the evil you DON'T know.' your quote is so appropriate for me! at least I sort of know what to expect with my current pain level ... but post-op? WITHOUT nsaidS? UGH! don't even want to imagine!

And also- words of wisdom from Australia- two of you recommended anti-anxiety meds. right on!
I have been prescribed Valium for muscle spasms, but I don't take it; think i only took valium for the MRI's. Well since deciding / "knowing" it's time to do this-- I have been unable to sleep, I've had diarrhea ( from nerves) so I took a valium- I'm still lucid, not drugged up at all, but at least I can sleep. better living thru chemistry! :D

I was just saying something similar to my husband on our drive home yesterday: with all my surgeries, the anesthesiologist no longer gives you something to take the edge off your nerves. I rememebr laying on the OR table, after moving myself over, and they were talking, setting up the room, etc.. seemingly forgetting about me- I was sort of abrupt and I asked "could you PLEASE give me something here?? please?"" and then he gave me something IV ... but really, why do they wait so darn long???? hello? this is nerve wracking, I've made the decision, now please help me! at least sedate me!

OK didn't mean to rant, I've had several GYN / abdominal surgeries as well., with good & bad experiences.

anyway: good advice in this thread! Jess, i'm still questioning my decision - but as has been said on this forum before: not doing anything IS a decision. your body will fuse- in the current crooked position, or the surgeon will speed the fusion thru surgery and try to correct the position as muich as possible. But with each year, your spine IS fusing already. slowly and painfully. This is why I want to get this over with already. My neck is fusing, my spine is fusing, there are arthritic changes- enough! I am declaring mutiny on my body. we're gonna do this MY way. for better or worse. with God's help

BendyBill
09-10-2011, 12:23 PM
As many people have already stated: this is a hugely helpful thread and thank you to all involved. Evelyn, your post has solidified my decision to go ahead with surgery. I'm currently at a 60* curve which has progressed 15* in the past 3 or so years but, like you, have no pain. However, I can't bear the thought of it progressing to 70, 80, 90* in the next 10 years and the complications this might cause to the surgery I will almost certainly have to have. On top of that, my feeling of wonkiness and the bouts of discomfort are more regular than before so, at this rate, I might not have 10 more years of minimal discomfort.

Jess, I hope you find the answers you need. My thoughts are with you.

Best wishes to all,

B

jrnyc
09-10-2011, 04:04 PM
thanks, Billy...
congratulations on making a decision....
best of luck with the surgery...

jess

debbei
09-10-2011, 04:54 PM
As many people have already stated: this is a hugely helpful thread and thank you to all involved. Evelyn, your post has solidified my decision to go ahead with surgery. I'm currently at a 60* curve which has progressed 15* in the past 3 or so years but, like you, have no pain. However, I can't bear the thought of it progressing to 70, 80, 90* in the next 10 years and the complications this might cause to the surgery I will almost certainly have to have. On top of that, my feeling of wonkiness and the bouts of discomfort are more regular than before so, at this rate, I might not have 10 more years of minimal discomfort.

Jess, I hope you find the answers you need. My thoughts are with you.

Best wishes to all,

B

Billy,

With me, I found that once I had surgery scheduled, I had more of a sense of peace with the whole idea.

Good luck,