Scared and more scared

[CHRIS WBS]

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/...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]

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]

I think most experts would disagree.
http://drlloydhey.blogspot.com/2011/...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]

I think most experts would disagree.
http://drlloydhey.blogspot.com/2011/...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]

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]

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]

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]

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]

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]

Great comments about expectations!

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]

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]

Disc pain after surgery?

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]

i thought they put metal inside instead of the discs...."cages," the surgeon called them....?

jess

[peachrush7]

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?a...coliscore-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]

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