teerrified of surgery

[Kimbob369]

Surgery vs no surgery

Hi-
I am a 47 yo F with 66 deg T, 55 deg L compensatory curve with large right sided rib hump.
Up until a year and a half ago I had no pain, but after encountering pain I went in for a consult and was told I should have the surgery.
I am trying to get in for another opinion, but surgery is a last resort in my mind. I have been doing other things trying to ease the intermittent pain and am not held back because of it in my life, am very active.
You can read other posts from me in this forum for more info, but..
Even though surgery is easier the younger you are..I will wait til the last possible time as it is a huge deal with NO guarantees either.. When or if it gets to the critical point I will then do it and I will be in good shape even in 20 more years.. Staying in good shape as possible is key in my opinion..
Technology also is always happening.. could be better down the road..
Good luck..

[The Slice]

Kimbo 369, You need to see if your curve is stable, if not the worse it gets, the less correction that will be possible. Although dealing with the pain is a concern, what is even more so is what kind of pulmonary compromise there is. You may want to see a pulmonologist and have a PFT (pulmonary function test) done to see where you stand. Also, what is your bone health like? Are you at risk for, or starting to have osteoporosis? This is important as if you develop osteoporosis later, surgical correction will be almost impossible, and you will be adding to the curve that is already there. Get evelauated, and look over the pros and cons of it all. If you are an active person, that's great, but it won't take the place of dealing with the scoliosis and the possible compromise in lung function. Good luck.

[Singer]

Thanks Kimbob and Summer for your replies. {sigh} I'm really looking forward to my consult with the spine guy on Feb. 22. I almost wish he'd tell me I'm going to drop dead if I don't have the surgery -- then I wouldn't have a choice. It seems like such a crap shoot either way. I MAY develop lung problems, or I may not. And surgery MAY correct my problems, or it may not. I did have a bone scan and I have no osteoporosis, and I'm a very young 50 -- normal weight and no other health problems. So I would guess that I have a couple of years to play with here. Sitting down for any length of time is really getting to be a problem, however.

SCOLIOSIS SUCKS!!!

[lelc2002@yahoo]

singer..

I know where you are coming from!!! It's a hard decision but as I said, you will probably know by your x-rays on the 22nd & really how you feel. Your body will let you know! Mine did... My thoracic curve feels like it's over as far as it can go on the left side. Of course once you know you will have surgery, you thk of all your aches & pains much more when you know there's help on the horizon...............Lynne

[Cakedec]

Another mid-life woman with scoliosis decision pending

I am in the same boat with all of you here. Woman age 47, thoracic curve 65, lumbar curve 75, getting worse one degree per year. Was able to live with it fairly well until the past year when I became disabled from cake decorating due to sciatic joint inflammation (probably from scoliosis) and neck pain, stiffness, and locking (also from scoliosis). My pain comes and goes depending on what and how much I do, whether I keep up with my exercises and stretching, and the weather! But it is hard for me to sit or stand comfortably for more than a few minutes with these curves. I pretty much live with the physical therapist these days; as we get one pain problem stabilized, another appears needing work.

I am seeing the orthopedic surgeon next week, the 15th, whom I saw 8 months ago. At that time, he said I was a candidate for surgery; it was my decision as far as the scheduling. My 20 year old son had been very ill from ulcerative colitis; almost died, and has had several surgeries for that. Now that he is doing better, it seems like it may be my turn. I work on a school schedule now, so am looking to mid June with the summer to recover.

My fears are this: that if I don't have the surgery soon, my curves will increase, causing more problems as I age, and the older I become, the less likely they'll want to do the surgery because of the lower likelihood of success. On the other hand, I have been reading on this forum that after 20 to 25 years, most people with fusions start having problems again; it seems to have about that long of a lifespan before problems develop and another surgery is necessary. I am also scared that I will be in worse pain and disabled after the surgery than I was before and know that is a real possibility, despite all of the success stories on here; there are some bad outcomes as well.

I think that all of our fears posted here are very valid ones and am so glad that we have this place to post and respond to each other.

Deb

[Singer]

Thanks for your note cakedec, and you're absolutely right about our valid fears. (I'm glad your son is better; how scary..)

What kind of physical therapy do you do? And it helps?

Actually, I had my x-rays done recently at the local hospital and when I was done I asked the technician if she could break the rules and let me see them before the radiologist did. She hesitated and said, "Well, are you sure you want to?" Of course, then I HAD to...and yeah, they were very shocking. My spine looks more animal than human....makes you wonder how people with our kinds of curves manage to stand up at all. I also had an MRI done and I have a couple of bulging disks and some arthritis.

I have to say that since I've been posting here I have many more aches and pains than I did before -- I'm more aware of them, I guess. I should probably lay off the computer for a while...maybe it's just all the sitting!!! Aaaaarrrrgh!

It's good to know all of you nice folks are out there, and how many of you are in the same boat as I.

[Sue_83]

Singer I agree with you when you say "I have to say that since I've been posting here I have many more aches and pains than I did before -- I'm more aware of them, I guess. I should probably lay off the computer for a while...maybe it's just all the sitting!!! Aaaaarrrrgh!" Ever since i joined this forum and reading everyones stories, my back starts to hurt. (then i become kinda depressed and sometimes strat to cry inside )
Im 22 years old, I found out i had scoliosis when i was like 15 or 16. doctors said it was to late to use the brace. and the last time i got checked was like in 2000 and it was about 50 to 55 degrees. I never went back becasue the places always made me cry. And i dont really have any pains in my back but just sometimes a night after a long hard day at work.
And now my concern is my future husband. I will be engaged very soon (i hope) He doesnt know I have scoliosis and im scared to see what his reaction would be. And also i was wondering Does it hurt your back when you have sex? like certain position or anything? (yes im a Virgin)
Thank you everyone for sharing your stories.

[lelc2002@yahoo]

sue,
you are so young & if you only have some occasional aches at night, you probably should just monitor the scoliosis yrly. When I was your age, my curves were a good size but I know I wore a 2 piece & looked good! I had no aches & pains. Now at 46 I'll have the surgery. My scoliosis took a turn for the worse after childbirth(2nd one). As far as sex, as long as you feel ok,physically, you should be fine, At my stage, I need to do what's comfortable for me! I have to say I was recently nervous about hurting myself but felt great afterward,,,it's a good stress breaker!! My back actually felt better!! ly

[Singer]

Sue -- my husband hardly notices my back, even though I have a huge hip bump. Hey, his body isn't perfect either (lol). He's just afraid of all the housework he'll have to start doing if I ever get the surgery (which I fervently hope is NEVER......)

Some of the posts on the Surgerical forums are downright terrifying -- especially the folks who need two and three more surgeries and still have pain.

[CHRIS WBS]

Terrified of Surgery

Hi All,

Just wanted to chime in. Yesterday at the mall I happened to notice a very old woman walking in front of me. It was quite obvious she had scoliosis and osteoporosis. Even her clothing could not hide her deformity. What amazed me was how energetic and spry she appeared. She was racing through the store and did not appear the least bit disabled. I keep hearing that this could happen and that could happen if you don't have surgery and while I believe surgery is necessary in extreme cases, I sometimes wonder if these are just a lot of alarmist predictions.

Chris

[Singer]

Hi Chris,

I know what you mean -- I've seen similar people who don't seem too badly off. But the thing I keep thinking is: every individual case is so different you can't really compare yourself to anyone. The father of a friend of mine is horribly bent (forward and sideways) and he's on oxygen 24/7 -- plus he has congestive heart failure which looks to be an agonizingly slow decline. He didn't get that way until the last 10 years or so, when it was too late for surgery. I look at him and think: nnaaaaah, that won't happen to me.

But would it? You never know.

[lelc2002@yahoo]

Hi all,
Just to chirp in.... I really did'nt feel I was that bad until about 2-3 yrs ago...I had the hump which was'nt pleasant looking but I still felt pretty balanced & physically in good shape. I started to feel changes last summer the most. I have always done too much around the house, in & out. I always did a lot of yard work, gardening on our hilly property! As of the last few yrs, I slowed quite a bit... Now even walking the mall, I'm achey & get horrible heartburn & my mid-section feels very tight, uncomfortable..
This is such a Big decision & I am so glad I never had to make it when I was younger. I know I will be a basket case this spring/summer before the operations but I have great confidence in Dr. Boachie ! check all the internet pages on him! Have you all asked your surgeon's opinion on what they recommend to you???? Ly

[CHRIS WBS]

Surgery

Hi Lynne,

I have seen three surgeons within the past year. The last one is the only one I would consider for surgery. My impression is that when you reach my age (50s), doctors will suggest surgery as an option only if you are having a lot of pain. The first doc I saw suggested surgery only because I came to him with a lot of pain and was unable to function. But now, for whatever reason, I have rebounded and am doing reasonably well. I do have some discomfort from time to time. When I had a follow-up visit with the first doc, he told me that I do not want to have surgery if I am not in pain even though I have a 75 deg. curve. The other two docs I saw also suggested surgery only if I could not function.

I would be interested in hearing from others in their 50s as to whether they have had doctors recommend surgery even though they are free of pain.

Chris

[klein5]

surgery alternative

I think that the Schroth method is a good alternative to consider before surgery. While the Schroth Method may not be a part of main stream scoliosis treatment in the US, that does not necessarily mean that it doesn't work. I am only 18 but it has helped me and I have seen it help adults as well. Some people will say that it is useless and can't be backed up with studies, I believe they are being quite close minded. While my scoliosis was only about 30 degrees I was terrified when the doctor told me I might have to have surgery one day. If you are a candidate for surgery you should seriously look into and consider the Schroth method. It is easier to learn this physical therapy when you are younger but adults can also learn it at a slower pace, and it is designed to help control the curvature, decrease body deformities, and manage pain. Think of what you will have to go through if you have surgery and all the activities you will not be able to do once you have recovered. There are clinics in Germany, Spain, England, Israel, and now the US. The website for the new US clinic is www.scoliosisrehab.com you can find more info there and links to research and literature on the Schroth Method and they are more than happy to answer any questions by phone or email.

[Ukman]

If you were a teenage girl doctors would certainly advise surgery. However because of your age they are likely to try and avoid this option unless there is a strong reason for recommending surgery.