Scared and more scared

[patty22]

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]

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=4tEyp...&feature=email

Ed

[Doreen1]

Patty
BTW here is a video of me skiing last January 1st.
http://www.youtube.com/watch?v=4tEyp...&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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

adult patients who don't have pain pre-surgery, are less satsified post-surgery?

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]

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]

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.