Surgery or not?

[Debra JGL]

Hi Roberta, Welcome to the forum. I was on the fence for about 5 years, and now I'm 5 weeks out from having surgery. My bigger curve is in the thoracic part of my spine, and my main concern is the affect on my lungs. I do have pain too, but it doesn't stop me from doing anything (tennis, swimming, even backbends). As Linda said, some people go on and live with severe scoliosis and consider themselves fine. But some develop serious problems as a result, and sometimes surgery is no longer an option. I figure there are risks and benefits to surgery, but there are also risks and benefits to waiting. It would seem worth it to get several opinions from orthopeadic surgeons who who understand your specific situation and health.

[LisaB]

I turned 56 last month and am scheduled for surgery with Dr Bridwell Aug 31. I'm not in a lot of pain but my curves have progressed over the years. I've also noticed that I've gotten more twisted, etc. I'm an active person - I play golf a couple times a week (I'm a social golfer with a way higher handicap than Golfnut), exercise and just do a lot of running around,etc. I'm afraiad that if I don't do this my quality of life will deteriorate as I get older. I'm healthy and my spine still has some flexibility. I don't think Dr Bridwell would do this surgery if he didn't think the benefits outweigh the risks. I do wish I would have done this 10 years ago, but my life was pretty hectic back then and I didn't feel that I could take a few months "off" for the necessary recovery time. So I'm doing it now and I'm getting anxious to get it over with!

[LindaRacine]

Hi Roberta, Welcome to the forum. I was on the fence for about 5 years, and now I'm 5 weeks out from having surgery. My bigger curve is in the thoracic part of my spine, and my main concern is the affect on my lungs. I do have pain too, but it doesn't stop me from doing anything (tennis, swimming, even backbends). As Linda said, some people go on and live with severe scoliosis and consider themselves fine. But some develop serious problems as a result, and sometimes surgery is no longer an option. I figure there are risks and benefits to surgery, but there are also risks and benefits to waiting. It would seem worth it to get several opinions from orthopeadic surgeons who who understand your specific situation and health.

For the record, large thoracic curves are an entirely different animal from large lumbar curves. Large thoracic curves can have an entirely different impact on one's quality of life.

--Linda

[gmw]

Hi Roberta -- Making the decision to have surgery was a difficult one for me even though I was in pain. I feared having more pain after surgery than before. At 63, I knew I wouldn't ever be in better health. I'm 9 weeks out and am still pleased I had the surgery. I was very scared to have the surgery and wanted to change my mind so many times. It was by no means a simple surgery and recovery was tough, but I had an excellent surgeon, a very supportive family, and many dear friends cheering me on.

Wishing you all the best as you make your decision, remembering it is not an easy decision and all of our situations are different.

Glenda

[golfnut]

Lisa B.,
I read your post and thought I could be writing it. I am fortunate to be retired from teaching, although I substitute several days a week. It's never a good time, but I truly think I shouldn't wait until I'm older and not in as good of shape. It will be nice to get this behind us and start the long recovery period. I was disappointed that Dr. Lenke moved my surgery date from Nov. 1 to Jan. 5, but at least I'll enjoy the holidays. Best of luck with your surgery. Be sure to let us know how you are doing following your surgery.
(Following surgery, I'll probably become more of a social golfer,too. Maybe I won't stress about the score so much-Hey, I'll have an excuse if the score isn't so good. On a brighter note, I just won a tournament last weekend & the whole time a played in the tournament, I kept thinking that next summer I won't be in it. Oh, well. There are sure worse things than that!)

[LisaB]

Golfnut - That is so great that you won a tournament!! I get excited when I win $20 at the pro shop for one of our events. Social golf isn't all bad. When I told Dr. Bridwell that I was allowed to play golf 4 months after my lumbar fusion he started making comments under his breath. He finally said that this would be a much longer fusion and I should plan on a year. Oh well. (At least my fusion is still holding up after playing golf.) January will be here before you know it. I'm guessing that our Christmas decorations won't be up to standard this year since I still won't be able to carry up boxes or climb a ladder to decorate the tree.

[Confusedmom]

Hi, my name is Roberta and I am brand new to this forum. I am incredibly confused and need help from those of you who have experience with severe scoliosis. My lumbar curve has gone from about 56 degrees 10 years ago to 78 degrees right now. The reason I am having a hard time deciding if I should have surgery or not, is that I have never been and still am not in bad pain. I have discomfort often, but over the counter meds alleviate it for a while. I know the surgery is huge with a lot of pain afterward. Therefore, I am wondering if you think I should wait until I have serious pain before having surgery. I would appreciate any help/advice from anyone who had been or is in the same situation as me.

Hi Roberta,
Welcome to the forum. I joined a few months ago for the exact same reason! My main curve is lumbar, appx. 70*, with a compensatory appx. 40* thoracic curve. I have seen six scoliosis surgeons. Five of them recommended surgery ASAP, but one recommended waiting a few years. I am 38, and am not in significant pain. (An Advil once or twice a month takes care of things.) The surgeon who recommended waiting says he has lots of older patients with lumbar curves who are "doing just fine." I was scheduled for surgery in September, but recently cancelled the date. I have two young children, one is a preschooler, and I just can't see going through the recovery with her at home. I am very scared of all the potential complications and the fact that they could lengthen recovery quite a bit. I'm sure I will have the surgery eventually (my curves are progressing), but right now I am on hold, learning all I can, trying to get in the best physical shape I can, and waiting for more pain. Before you decide, I would recommend reading David Wolpert's book about scoliosis surgery and also searching PubMed for research on scoliosis surgeries of the kind you're considering. Good luck! Keep us posted.

Evelyn

P.S. I also keep changing my mind; so you could hear a different story from me next week.

[RSH]

Thanks for the feedback

Hi again, I am so impressed with how many people cared enough to respond so quickly. Did it confuse me, yes, but more than that, it made me feel good to have a network of people who understand what I am going through. I will re-read all of these posts again slowly over the next couple of days and reply to some individually, but for now, I just wanted to say thanks for the warmth, caring, and understanding. Having never been on a forum like this before, it's a little overwhelming, but in a good way.

Much appreciation to everyone,
Roberta

[JenniferG]

I had my surgery at almost 58. My surgeon told me I could certainly have the surgery in ten or more years time, but it would be harder to recover from and I may not get as good a result and in the meantime, my curve would continue progressing and my pain, at the time only mild to moderate, (mostly mild) would increase.

He said ideally, to have it within the next 12 months. I did. I was keen to have it before it got worse and was suffering worse pain. My spine was still reasonably flexible and my bones good. I didn't want to wait until my health wasn't as good.

I'm very happy with my outcome with the added bonus of cosmetic improvement.

[ADMoul]

Hi Roberta, Welcome to the forum. It's a wonderful resource for information and venting, too. As you can see from my signature, I had very severe curves which gave me no trouble for most of my adult life. My father lived to 83 with a severe thoracic curve and never had a problem. I think I knew mine were progressing but preferred to stay in my little world of denial and kept buying bigger bras and cover-up clothing. However, the pain that I would get occasionally started to very gradually become a permanent part of my life, I started getting nerve compression symptoms and scoli now prevented me from doing the things I wanted to do. I am someone who was truly terrified of this surgery. In fact, even now, sometimes I can't believe I did it. Last summer, though, something changed. I talked with a good friend who had been through a botched fusion and subsequent successful revision, read the Wolpert book and started researching surgeons. For me, the critical factors in my decision were pain relief and quality of life. I think you will know when you've found the right Dr. and when surgery is right for you. Although I had decent conservative mgmt. from my local Dr.'s, pursuing this surgery is something I did totally on my own. It was the right time in my life to do it, I was emotionally and physically ready and 6 months post-op, I'm like a new person. Yes, I still have a significant curve and some relatively minor healing aches and pains. If I had done this earlier, I might have gotten a more dramatic correction but the bottom line is I have come out on the other side of this much, much better off than I was before. Recovery is not easy, and I did have a major bleeding complication, but at least for me, the rough stuff was short-lived. Keep doing your research, listen to your body and live your life to the fullest no matter what decision you make! Best of luck to you!

[loves to skate]

Sally,
It was Amanda (Backout) not me who was concerned about the price. Fortunately, Dr. Lenke's office said my out of pocket cost will be $250.00.
I am very happy about that!

Sorry Karen. Amanda if you have insurance coverage when you become 65, as I did and you do, insurance companies cannot deny you for a pre-existing condition when you apply for a Medicare supplement or Medicare Advantage plan. I even reported that I had DDD and scoliosis when I applied for my Medicare Advantage PPO plan. My plan also payed for the BMP but the hospital had to get pre-approval for it as well as the surgery. My costs were minimal. I paid $750.00 for 10 days in the hospital, nothing for 11 days in rehab and roughly $1,500.00 to the Doctor. Medicare only pays a portion of what the hospitals and Doctors bill and you as the patient only have to pay 10-20% of those costs depending on your plan. The trick is to make sure your Doctor accepts Medicare patients. Some do and some do not. BTW, my Medicare Advantage PPO plan at the time only cost me $118.00/month including drug coverage. I hope this helps anyone on Medicare or about to go on Medicare.
Sally

[Doodles]

Roberta--
Welcome! As you can see you will get lots of good info here. I can echo much of what Jennifer and Anne said. I did have pain and quality of life was going downhill fast. I finally felt it was time even though I tried valiantly not too for years! I know it was right for me and I feel better. I look better but my cosmetic result wasn't all I had hoped for--but it was still worth it. Good luck with your decision. Janet

[Singer]

It's a very tough decision -- I always said scheduling surgery was like making an appointment to be hit by a bus!! I had a big, progressing curve with increasing pain and deformity, so after two years of thinking about it and despite being deeply terrified, I took the plunge. It was rough, with a long recovery, but I'm doing very well now and I got excellent cosmetic results.

[Back-out]

Re Medicare Advantage Plans and associated cost issues

Sorry Karen. Amanda if you have insurance coverage when you become 65, as I did and you do, insurance companies cannot deny you for a pre-existing condition when you apply for a Medicare supplement or Medicare Advantage plan. I even reported that I had DDD and scoliosis when I applied for my Medicare Advantage PPO plan. My plan also payed for the BMP but the hospital had to get pre-approval for it as well as the surgery. My costs were minimal. I paid $750.00 for 10 days in the hospital, nothing for 11 days in rehab and roughly $1,500.00 to the Doctor. Medicare only pays a portion of what the hospitals and Doctors bill and you as the patient only have to pay 10-20% of those costs depending on your plan. The trick is to make sure your Doctor accepts Medicare patients. Some do and some do not. BTW, my Medicare Advantage PPO plan at the time only cost me $118.00/month including drug coverage. I hope this helps anyone on Medicare or about to go on Medicare.
Sally

Just noticed the special notes, Sally. Thanks and sorry for not responding sooner.

A few words in reply. Most unfortunately, there are no Medicare Advantage plans available in my area - unsure how I could manage to move to another area to qualify. Also, if I do so after the "open enrollment" period, I wonder if I could get such a policy without its being medically underwritten.

That's assuming Medicare Advantage plans aren't phased out everywhere, generally . I sure hope not but Congress has, as you know, voted to stop subsidizing them (as the govt has been) At the very least, that will mean rates will go up quite a lot. I believe you have encountered some of this unpleasantness just by moving.

I'm very pleased to learn that they sometimes pay for BMP. Evelyn (Confusedmom) posted that Dr. Bridwell gave her and other patients a handout saying Medicare was not paying for BMP in almost all instances. That's where I got the info. From a couple of long calls to AARP, I gather than the Advantage plans differ quite a lot depending on which company has designed the product - they are, after all a for profit vehicle.He told me that basically each plan has to comply with a regulation providing for some kind of net value, to be achieved any way they choose - thus making comparing prices virtually impossible. One can compare one particular feature or medication, but an across the board comparison is - whew! No way... Even this agent said so. You can't even go by the mother company's reputation since their Advantage subdivision could be completely different in how they deal with claims, the whole ball o' wax.

I'm ineligible at present, anyhow. I'll be interested to know what you decide to do in your new location and wish you the best of luck.

FWIW as I pointed out elsewhere, much of my calculated difference in surgical cost is a function of NOT getting the benefit of my excellent AARP indemnity plan, though - after next big birthday. It writes big checks for surgical procedures and associated expenses.

Hate dealing with insurance issues but no way around it) ...Many thanks for your comments and advice!

[Back-out]

It's a very tough decision -- I always said scheduling surgery was like making an appointment to be hit by a bus!! I had a big, progressing curve with increasing pain and deformity, so after two years of thinking about it and despite being deeply terrified, I took the plunge. It was rough, with a long recovery, but I'm doing very well now and I got excellent cosmetic results.

I read a post by you elsewhere where you said you would do "anything" to avoid having your belly opened up again for an anterior procedure and I wonder if you would elaborate on that, please. Is it really so much worse than a posterior surgery? If so, why? I wonder if a more M.I procedure would make it more tolerable (I'm sure cutting abdominal muscles is no fun - I had it done on a small scale for a bladder op).

Hoping you see this. Perhaps should have made this a PM...

Best!