Why you did/didn't have surgery?

[SIsForSarah]

Wow, this is some scary stuff!

I've been told several times over the years that I needed "THE SURGERY" but have never been told what that would entail. It would be interesting to know exactly what was done during surgery to help correct your problems. Example: put in a rod, take out the hump, how they relieved pressure on the lungs, what procedure was done in surgery to make you feel better? Does the straightening of the spine cure all or are other things involved when they do "THE SURGERY". Hope this makes sense. Thanks,
dd

My surgeon used rods to straighten my curve from 62 degrees right before surgery to about 30 degrees afterward, and used the bone graft from my hip to start fusion. The straightening was enough to take the pressure off my lung (I literally felt no pressure in my chest after my surgery as I had before). I read another thread where someone described having stomach problems from a lumbar curve that disappeared after the curve, and pressure, were removed by the surgery straightening the area. Bone going where it shouldn't go can really do a lot of damage unfortunately.

[Nancy Joy]

I took medicines for years for pain from scoliosis and gradually found myself giving up activities I enjoyed and always accomadations were made "for Nancy's back". 10 years ago I had a real "crash and burn" (not literally) and life really became limited- I had to give up horse riding, water skiing, etc. I was told not to have surgery as it wasn't that perfected for adults at that time. This last year I was not able to even take walks for cardio and standing at the kitchen counter to make cookies even became painful. It was found that my spine had started rotating and my PD said something had to be done. Adult surgery has improved greatly in the last 10 years, I have no other health problems and I wanted my life back. I have not regretted having surgery for one minute!!

[Anchie]

Well, I haven't yet decided what to do!

there is a surgery as an option in my mind on one hand. On the other hand, I dread all the recovery process, possible complications and failures....

Maybe I would think differently If I had some problems with daily life and routines. For the time being I'm fine.... If only I could see the future....

[bluestone]

surgery

I can relate so much to some of the things been said in these posts.
I know that I will end up needing surgery and am trying to pluck up the courage to insist on being refered to a scoliosis specialist-have only seen orthopedics who say surgery is not the way to go-my curve is now 60 degrees.
Each year I find im doing less and my days are ruled by pain.I cant stand for as long as I used to and sitting is getting more and more uncomfortable.
Im 43 now and I know ive got to do something about it while im relatively young.

[debbei]

Well, I haven't yet decided what to do!

there is a surgery as an option in my mind on one hand. On the other hand, I dread all the recovery process, possible complications and failures....

Maybe I would think differently If I had some problems with daily life and routines. For the time being I'm fine.... If only I could see the future....

Anchie,

At your age, I was probably at your point as far as degree of curves. Who knows, maybe you won't progress any further. Some people do, some people do not. I'd say the most important thing to do is document (by Xrays) now and every few years where you are so that the Dr.'s have proof how you are progressing. And then some day, if you are having pain and progression, you may consider it.

[chello_ns]

My surgery is a month away. I decided to have surgery because there are more and more things I don't do because of the pain it causes and I’m only 25 yrs old. One of my doctors told me the deterioration and arthritis in my spine was equivalent to someone in their late 30’s due to my scoliosis, I‘m too young for that, I don‘t want to grow old before my time. I’m always in pain to some degree whether in my back, leg or nerves causing weird sensations. My clothes don’t fit right, some clothes I don‘t even purchase to due the fact that they show off “the humps“. I’ve lost 4 inches of height, an inch of that after the curve wasn’t supposed to be progressing. Some chairs I can't sit on if they're designed in a way that one of my rib hump stick out into them. I have to sit on the right side of a movie theatre or church due to the twisting of the spine causing me to lean to the left, imagine just being able to sit where you want! The list goes on but rather than concentrate of the bad things about scoliosis I guess I’ll sum up my decision as a chance at a better quality of life.

[Anchie]

Anchie,

At your age, I was probably at your point as far as degree of curves. Who knows, maybe you won't progress any further. Some people do, some people do not. I'd say the most important thing to do is document (by Xrays) now and every few years where you are so that the Dr.'s have proof how you are progressing. And then some day, if you are having pain and progression, you may consider it.

Dear Debbei,

thanks for addressing my post and giiving me advice. I appreciate that much since you have more experience through life with scoliosis then I do.

Surgery is always there as an option in the back of my mind!
If only I hadn't ignore the problem earlier and kept tracks of my curves! I can't travel back in time (unfortunatelly), but I hope I haven't come round too late!

[scooter950]

surgery decision

Hi DDR- well I HAVE decided to have surgery. Big decision. I tried to "live with it" but I'm just getting more debilitated and having more pain everyday. Even with a memory foam topper, I wake up with sciatic like pain in my hips every night, I have pain when I sit, when I stand, when I drive the car. And I have a 40 min commute! I hope to have surgery in 2011. My reason for waiting? well, insurance problems. I want to get additional insurance, and I want to see a few different surgeons before I decide who will operate and where I will have to travel. but... my curve's more or less stable; it's the discs that are herniated, and I guess it's just age taking its toll on me.

I tell you, this forum has been a Godsend to me. I've learned so much by reading everyone's posts. Best of luck with your decision.

Jamie

[ddr]

JenniferG - I never even thought about measuring myself. It took me a few weeks to get up the courage to do that. Since the last time I measured myself in my 20's I have lost 4 inches. What a shock! I just thought everyone around me was getting taller. Good luck on your surgery! Hope all goes well for you.

Debbei - your grandmother's story - scary and very possible.

Susie Bee - I guess I'm at where you were before your surgery.

Ed - I don't know what any of that means but I dug out some old papers and will add the description to my signature.

Chris - When I was young my doctor said "If you were my daughter I wouldn't have the surgery because it is strictly for cosmetic reasons only" . Now I say "cosmetic my a__".

dd

[ddr]

Nancy - I can totally relate regarding the walking and standing at the kitchen counter.

Anchie: "If only I could see the future" yes - I know what you mean.

chello - have you had the surgery yet and how is it going?

scooter - I use to have pain driving the car. I went to rehab and they told me to sit as close to the steering wheel as possible and it worked for me.


It really is great to talk to other people going thru this scoliosis thing.

Thanks,
dd

[debbei]

JenniferG - I never even thought about measuring myself. It took me a few weeks to get up the courage to do that. Since the last time I measured myself in my 20's I have lost 4 inches. What a shock! I just thought everyone around me was getting taller. Good luck on your surgery! Hope all goes well for you.

Debbei - your grandmother's story - scary and very possible.

Susie Bee - I guess I'm at where you were before your surgery.

Ed - I don't know what any of that means but I dug out some old papers and will add the description to my signature.

Chris - When I was young my doctor said "If you were my daughter I wouldn't have the surgery because it is strictly for cosmetic reasons only" . Now I say "cosmetic my a__".

dd

DD,

A crystal ball would help. Wouldn't it be nice if we always knew for sure what is best for us. I wonder, did I have this surgery at the right time in my life? Should I have done so sooner...would I have been better off, getting a better correction? Who knows. I feel that my life was pretty pain free until the last year or so prior to surgery, so maybe the timing was right. At least it makes me feel better to think that. I know that for years I ignored my scoliosis and just assumed that I bypassed the need for surgery, EVER, because I didn't have it as a teenager. Wasn't I just plain old WRONG. We just never know what path our lives will take.

[albsmom]

I finally worked up the courage to get back on this website. Everytime I think about my scoliosis and "the future" I get so scared. I'm grateful to know there are others out there. I am 38 years old, have had a severe scoliosis since age 11 and was never operated on. My curves are currently at 70 degrees lumbar and 51 degrees thoracic and appear to be progressing about 1 degree per year, which is not unusual. I live in the Baltimore area and saw a spine doctor at Hopkins. It sounds like it's just a matter of time until I will start having pain that will prevent me from leading a normal life. I have not had pain up to this point. I do pilates, yoga and am trying to stay in the best shape I can. I am just scared of the "waiting" and and "what-if's". When will I have pinched nerves? When will I be in so much pain I can't bear it? Will the surgery help or create more complications? I could go on and on. I am just thankful to know this forum exists and there are other who can provide support and encouragement. I will continue to read these posts and ask questions. THANK YOU!!

[tabbycat]

Any other baby boomers wear a Milwaukee brace back in the day?

I'm new here. I'm 52 y/o and wore a Milwaukee brace in the 1970s for my right lower dorsal scoliosis curve. The brace corrected the curve from 36 degrees to 27, although I think now it might be slipping back since I've lost 1/2 inch in height. I would have had surgery had it been recommended, but it was not recommended by my orthopedic surgeon.

I am wondering who else out there has a similar situation, and if you had to have surgery later in life.

I'm not having any problems right now. If I walk or do the treadmill faithfully, I have no back pain at all. I have some back pain if I am a "slacker." I hate shopping for clothes and especially swim suits because I am so "crooked". However, if I dress carefully, no one can even tell that I have scoliosis. But shopping is a pain!

Ginny
36 degrees in 1970
27 degrees in 1975
Right lower dorsal scoliosis S curve
Milwaukee brace

[Karen Ocker]

Tabbycat:

It is a good idea to check your curves every 5 years or so by a scoliosis doc who specializes in adults. Unfortunately some adults have curves which progress despite treatment as an adolescent. If you have lost height this young it could be happening. A 27 degree curve should not make you look "crooked".

[debbei]

I'm new here. I'm 52 y/o and wore a Milwaukee brace in the 1970s for my right lower dorsal scoliosis curve. The brace corrected the curve from 36 degrees to 27, although I think now it might be slipping back since I've lost 1/2 inch in height. I would have had surgery had it been recommended, but it was not recommended by my orthopedic surgeon.

I am wondering who else out there has a similar situation, and if you had to have surgery later in life.

I'm not having any problems right now. If I walk or do the treadmill faithfully, I have no back pain at all. I have some back pain if I am a "slacker." I hate shopping for clothes and especially swim suits because I am so "crooked". However, if I dress carefully, no one can even tell that I have scoliosis. But shopping is a pain!

Ginny
36 degrees in 1970
27 degrees in 1975
Right lower dorsal scoliosis S curve
Milwaukee brace

Hi Ginny,

Yes I wore the horrible brace back in the 70's. ICK it was a horrible experience. When I got out of the brace, both my curves were right about 30 degrees, but over the years, each progressed to 66 degrees. I was very shocked but I shouldn't have been. I think I had my head stuck in the sand. I should have realized when my waist was getting shorter but I didn't. Guess I didn't really WANT to know. Good luck to you. It's probably a good idea to be checked by a scoliosis specialist as Karen suggested. Even if you're not having pain right now, it's a good thing to know your measurements.