Any Advice

[avenanzi]

I have just come back from my appointment with my doctor and I do not know what to do. I now have a 41 degree curve which is not bad except for the pain is getting worse. It is normally a dull uncomfortable ache and occasionally is unbearable I have tried alt. options and nothing seems to work. Should I wait until the pain gets worse to have the surgery or should I get it over with now? If I wait the curve will get worse and less flexible and harder to heal. However, I am scared of the surgery altogether. What’s worse living with scoliosis or the surgery?

[sweetness514]

I don't know if any surgeon would want to perform surgery on your curve, it's usually recommened for at least 45-50 degree curves. You're borderline.

I don't know your age, but if you're young you can wait a few years and the correction would still be very good. Fortunately scoliosis is not something that has to be taken care of as an emergency, you can wait and see and have surgery when you're ready in every way, b/c believe me you will need to be preapred for it 100%, it's a biggie.

As for finding out if people have less or more pain before or after surgery, that depends. Most get relief from surgery, some do well or a long time, some do well and then have post op problems down the line(DDD above and/or below fusion b/c of the added pressure on unfused vertebreas, problems with hardware), each case is unique.

For me, the type of pain that I was in at the time of surgery, I can say a lot of it was relieved after surgery. Other types of pains appeared(neck stiffness, hardware problems) and I had revision surgeries though, but I still had to have surgery. I had a 60 degree curve and was 26, and the pain was starting to really affect my life.

[Suzy]

Hi Avenanzi,

Your age may very well play a part in a Drs. decision plus, the progression of your curve. Your pain effecting your life would be a factor as well I would think. I got so bad pain wise before my surgery I couldn't wait to have post-op pain. At least I knew that was going to decrease not increase. Yes, as your curves get worse you might get less correction. Also, as you age you might loose flexability. (Which affects correction as well.) I will tell you after I went to a support group for scoliosis patients who were thinking of surgery,were post-op or not going to have surgery I ran home to see when I could get scheduled for surgery. The women who chose to not have surgery for different reasons (Most were scared.) were REALLY messed up. The way their scoliosis deformed them was FRIGHTENING! I plan on attending the next meeting and giving them info on this forum. For most of them it is probably too late but there were others I think can be helped. I think knowledge helps you to not be so scared, it takes away the unknown. Sweetness is right, you need to be ready mentally and physically for this surgery. We aren't kidding when we say it is huge however, having a choice as to when you want to have surgery helps a lot. I still think after reading all the posts on how people have recovered and how much their life has improved after surgery it is still the best decision I ever made. I have a bit of pain when I over do it. (I'm almost 6 months post-op.) The pain is far less then what I had before. I shopped for over 5 hours yesterday (I was a bit achey toward the end.) prior to surgery 2 hours would kill me and send me to bed for the rest of the day!

[CHRIS WBS]

Hi Suzy,

I attended my first scoliosis support group meeting last evening, and I can honestly say I was not swayed one way or the other. Yes, there were a couple of women there with very noticeable disfigurements. But they were in their 70s and had other health issues, one with cancer and another with Parkinson's Disease. Those who had surgery discussed their ongoing need for pain management, physical therapy, etc., etc. I spoke to a woman who had surgery by a surgeon I have consulted with and may decide on as my surgeon of choice. Because of complications with hardware, she ended up having four surgeries. Out of the 35 or so people who were present, no one shouted from the rooftop that surgery was the greatest thing since sliced bread.

This is one decision I sure wish I never had to make.

Chris

[Karen Ocker]

surgery?????

Most people who have successful surgeries go on with their lives and do NOT hang around forums/support groups. You will find them living normal lives. They are the best sources.

I personally contribute because I want to give hope to older adults facing this type of thing and encourage persons with PROGRESSING curves to deal with it sooner than later. Progression in adults does not stop--unless stopped by surgery; that is the bitter fact.

A good idea is to talk with a surgeon's previous patients and see how they are getting along.

There is still a lot of fear, misinformation and even hysteria which keep persons who really need the surgery from getting good help. Finding a good doctor is paramount.

I want to add that my mom had a relatively minor curve as an adult; now she only got really twisted the last 3 years but it doesn't bother her at almost 90.

[dorigirl]

I agree with all the advice given so far. I'm just wondering.. how old are you? and is your curve progressing? I think you are seeing Dr. Kebaish (if I am remembering correctly), I am seeing him also. Did he give you any idea if he thinks you are likely to progress? It may help in the decision. I know for me, my curve is 60* up from 35* and in his opinion, very likely at my age (35) to get worse, making surgery inevitable.

Educating yourself will give you the knowledge and confidence to make your dicision, I wish you the best of luck...it is not an easy one.

Also, I would like info on previous patients, but since the HIPAA Act, does anyone know how to go about getting info like that?

[Suzy]

Dorigirl,
I think if you ask your Dr. for references there has to be some of his/her former patients who have given the O.K. for their name to be passed on to future patients. I made sure my Dr. knew it was O.K. to give out my name and #. Hopefully this is the case in your Drs. office.

[bbest]

For me, living with the constant pain scoliosis caused me was not an option. I never asked other folks for advice as to whether or not I should have surgery because I knew in the end it would be me on that table, not them. This forum helped me realize that surgery is not the end of the world. Times have changed, technology has changed. I would guess that at some point we have all heard the horror stories about "a friend of a friend of a friend" who had back surgery and was never the same again. I am not trying to trivialize the seriousness of this surgery or your decision for that matter. I am just trying to ease your mind a little. There are no absolute guarantees. Surgery may improve your life and it may not. One thing is certain, however. Your curve will not improve on it's own. It sucks, but it's a fact. You have to decide whether or not the pain is something you can live with, potentially for the rest of your life. Once you answer that question, I think you will be closer to making a decision that you can live with.

Brandi