Anyone 70 yrs + who didn't have surgery?

[Lorz]

I am wondering if there is anyone here,with a large curve, who is older (70+) and chose to not have surgery?If so, what is your quality of life? What I really would like is a crystal ball, to tell me what my life will be like in 20 yrs, if I choose not to have surgery. I had pretty much made up my mind, to take the plunge, until I read the horrible news about Joys recent surgery. It makes you really realize the risks involved. So, if there is anyone out there who can give me any insight, I would greatly appreciate it!!

[Lue]

70+

I am wondering if there is anyone here,with a large curve, who is older (70+) and chose to not have surgery?If so, what is your quality of life? What I really would like is a crystal ball, to tell me what my life will be like in 20 yrs, if I choose not to have surgery. I had pretty much made up my mind, to take the plunge, until I read the horrible news about Joys recent surgery. It makes you really realize the risks involved. So, if there is anyone out there who can give me any insight, I would greatly appreciate it!!

I am 67, and need revision surgery an scared silly, my first surgery I was 59, if everything goes well you will have better quality of life, if you choose not to have surgery , ask Dr. how bad will you get, I was told I would need a walker or wheelchair in my older years. I am seeing Dr. Kebaish, at Johns Hopkins in Md. Who are you seeing? good luck Lu

[Lorz]

Hi Lu

Thanks for your response. I think it is the "if all goes well" part of the surgery that I get hung up on! How extensive was your original surgery, and why are you needing a revision? I saw Dr Neuwirth, and have an appt next week with Dr. Boachie. When I asked Dr. Neuwirth what I would be like without the surgery, he said "If I had a crystal ball.." It would be A LOT easier to decide if someone would tell me I would be disabled. The proposed surgery is really extensive with an A/P approach, T5 to pelvis w/ anchors. I saw a local surgeon who suggested fusing the apex of each curve, just to prevent progression. I have never heard anyone on this forum even mention that as an option. You are certainly going to an excellent facility. I wish you luck. I am sure the idea of another surgery is terrifying.

[golfnut]

Lori,
I know exactly how you are feeling. I decided in Dec. that I would have the surgery since Dr. Lenke said my "prognosis would not be good in later years without surgery." I was too upset to even ask what he meant. I'm assuming that the curve would continue to progress and I wouldn't have much quality of life physically. I am very active now and have pain ONLY after certain activities, such as, raking leaves, standing a long time, etc. I hate to think of the permanent limitations with 2 long rods down my back, but without surgery I could have limitations, too. I just turned 60, so I don't think I can just wait and see if I develop pain that makes me want surgery & feel the necessity of surgery. I have been so upset thinking about Joy and Brenda and worrying that I could just as easily have complications since I'm not young. So many people ask why I would have the surgery since I'm not in pain.

[Lorz]

Karen,

I can really identify with everything you have said. I, too, live a fairly active life, work part-time, and deal with my pain by basically getting off of my feet for a while. My chiropractor, who I have seen for years, is totally opposed to the surgery. She has several pts., in their 70's, with severe curves, who she says are still active.She says by now, our bodies have compensated for the curve, and we should leave "well enough alone". I was pretty much told the same thing by 2 orthopedic surgeons, who said only do it if you are disabled. One offered me the option of pinpointing the source of the pain, and fusing that area only, which I find interesting. But, the top NYC surgeon I saw, did not think that was an option. At what rate is your curve progressing? Did you see an increase after menopause? I wish I knew the answer to our problem, but I don't. I do know all of the things that can happen in surgery, esp. one this extreme. I also know I want to live to see my beautiful grandchilren grow up! Good Luck with whatever you decide, and know you are not alone in the mental battle you are waging with yourself, I am right there with you!

[Lue]

70+

Hi, my first surgery was done by Dr. Bolderston, Pa. Hospital, 2002, everything was great for 8 years, then I developed flatback and a pinch nerve at l5-s1, sometimes people need revision surgery, so Dr. B. sent me to Johns Hopkins. First surgery was hard, 1 month no car,they give you good pain meds. He told me it would be 8 months recrupe. I am hairdresser and I was back to work full time in 7. Lu

[JenniferG]

At my first appt. with my surgeon I asked that question. "What will life be like for me in 10, 20 or 30 years if I don't have the surgery?"

His reply was that my curve would continue to increase as would my pain. He said surgery in 10 or 20 years would be doable, but possibly at greater risk, less of a correction and with a longer recovery. The pain part helped me make the decision. I'm not good at pain nor taking medication.

Yes, Lorz, my curve increased rapidly after menopause. Not sure what the connection is, because my bones were/are good.

[Singer]

Hi Lorz,

I've told this story before, but it's worth repeating at this point. I'm friendly with a woman who is in her mid-70s and who has a significant lumbar curve (she says it's around 60 degrees but to me, it looks larger). She knew I had the surgery and told me at the time that she wished she'd had it when she was young because she's in so much pain now. She can't walk more than a few hundred yards without having to stop, and sitting for any length of time is also extremely difficult. She also can't stand in one place for more than a couple of minutes. She's had a few rounds of PT in the last five years which she says didn't do much to help. She doesn't have nerve involvement, per se -- just sharp aching and fatigue mostly at the apex of the curve.

My own curve increased dramatically after menopause, too -- and I don't have osteoporosis. I'm glad I had the surgery but it was a long recovery and it took me a while to be able to say that.

Every case is so different, and it's impossible to generalize or take someone else's experience as an indicator of your own. BUT....from what I understand, the vast majority of people who have this surgery do okay with it. It's a very serious operation but worth having IF and only if all indications are that you're going to suffer increasing pain and/or deformity down the road.

What was hardest for me to accept all along was the fact that whether I had the surgery or not, my back was never going to be normal. Either way, I was going to be faced with some pretty big difficulties -- but with surgery, I at least had the chance of stopping the progression and correcting the deformity.

[golfnut]

Lori,
My 33 year old nephew is a chiropractor. When he heard that I was having surgery, his comment was , "I can help her." However, when my sister-in-law told him that my curve was 77 degrees, he agreed that surgery was the right choice. My curve was about 45 degrees during high school, but when I went to Dr. Lenke at age 52 it was 70 degrees. It is now 77 degrees, so yes, it increased more rapidly after menopause. If someone promised me that my 77 degree curve would never be worse than it is now and that my pain level would never increase, I would definitely not have surgery. I can do everything now that I physically want to do. I talked to Dr. Lenke's office today after being so upset about Joy's condition. Because of my age, I only have a small window of opportunity to have my surgery. I think all surgeon's mention the 1-2% that have serious complications, but we just don't know if we are going to be in the 1-25 or the 98%. I feel so badly for Joy and hope she can make a full recovery.

[jrnyc]

i do not believe that age 60 means a decision must be made...as a matter of fact, i know of doctors operating on 70 year olds...i am not saying that it is the ideal...just that it certainly is done! i've spoken to a few of those patients on the phone...

there are other factors that i think make spines more painful as we reach upper ages...including disc problems, spinal stenosis, etc...i've had several doctors swear to me that if one lives long enough, the odds of developing disc problems is almost a sure thing!

jess

[titaniumed]

We are all so different.. Some of us need surgery young, and some of us last quite a long time without surgery.

I was at my end at age 49. I dont think I could have made it any longer without my surgery. My surgeon saved my life, and Im very fortunate that I came out as well as I did.

I am currently on the road, and now CAN handle plane rides, long drives and have no pain.
Ed

[Lorz]

Thank you everyone for your input. Ed- was it very clear to you, when you had reached the end? I guess I am thinking if I am not mentally at that point, then it is not the time to do it. Singer- Your comment about having to accept that your back would never be "normal" really struck a chord with me, that is something i struggle with too. I find myself, at times, feeling envious of my friends who have straight backs, and feel so petty for doing so. I am also envious of those of you who had the courage to go through the surgery! I just cancelled my appointment with Dr. Boachie, because I know he will recommend surgery, and I just can't make that decision yet. It is really great to be able to vent to people who understand. All my life, my scoliosis has been my "big secret". I was always trying to prove I could keep up with everyone else.

[jrnyc]

i did that too for a while...trying to prove i could do everything everyone else could do!

i sent you a private message yesterday...

welcome to the forum

jess

[lray]

I find myself, at times, feeling envious of my friends who have straight backs, and feel so petty for doing so... All my life, my scoliosis has been my "big secret". I was always trying to prove I could keep up with everyone else.

I have felt this way since the age of 15 or so. Having to tell others now that I'm having this surgery and why has been so difficult because this was my "big secret" too.

Also ever since I hit 50 this year and made the decision to have this surgery, my back pain is getting steadily worse and I'm finding that I can't do the same things that I used to or at least for not very long. I'm tired of feeling "old" when just up to a couple of years or so ago, I could do anything that the "straight back folks" could.

I had to reach the point where I just couldn't take it any longer - the pain and the increasing deformity. I'm sure you will know when the time is right for you.

[Confusedmom]

I talked to Dr. Lenke's office today after being so upset about Joy's condition.

Karen,

What did Dr. Lenke say? (Or Bernie?) Was it the typical "complications can happen with any major surgery?" Or was there something about Joy's case in particular (the large curves, etc.) that predisposed her to this possibility?

Liking this thread. Thank you all. I totally agree about learning to accept that my back will never be normal either way. It's like you wake up one day at 50 (or 38 in my case) and realize you are disabled--or will be.

Can't stop thinking about Joyfull because she was so perceptive/cautious with her posts before surgery. And when she did post once after surgery I thought (hoped) she was out of the woods!

Lori, I am in the same place you are. I can't pursue surgery right now because I'm just not ready. The pain is starting to get worse and I am actually welcoming that in a weird, twisted way because it will help me make this decision that I know I eventually have to!

I keep thinking: I have to do this, the pain is getting worse and it's better to do this when you're young. Then: but what if I die or become severely disabled? I have a four-year-old and a seven-year-old. Shouldn't I postpone this as long as humanly possible? I know it's not likely, but still is it reasonable to voluntarily take such a risk when you have such responsibilities?

Evelyn