Ageing w/scoliosis

[lostfan]

Shelley,

Thank you for responding. That is very encouraging news. So you haven't had any problems with your curve getting worse then after the correction or had to have any kind of revision surgeries?

My main curve is thoracic but I was told I also have compensatory curves in the upper and lower spine. The lower curve makes my hip really prominent and I would love to get rid of that as it keeps getting worse. The surgeon I did see - although he won't be doing surgery as I didn't feel comfortable with him - but he said this curve would go away on its own once the main throacic curve was fixed. I would probably be fused similar to you - maybe a little less.

[Hopeful]

Shelley-
I am so happy to hear your surgery has been problem-free. That is so encouraging to me. I feel like the only people I hear about are the "bad" cases. Which makes sense, in a way, because if you have a successful surgery and recovery you probably are not out on this website looking for help or answers to your issues - you are out enjoying your life!! I have a few
questions about your surgery, if you don't mind me asking:
1. what kind of physical shape are you in?
2. what type of work (desk job or on your feet) do you do?
3. do you have any problems with pain?

I am hopeful these things will contribute to an easier recovery and long-term prognosis, if and when I opt for surgery. I feel like my only long-term option is to have the surgery. Hearing your story has made my morning!!
Hopeful Becky

[Hopeful]

Hi Lostfan-
My Aunt with the scoliosis never had her curve measured. As I mentioned, she is 87 years old, so it was never formally diagnosed by a doctor. She looks very hump-backed now, since she has lost many inches in height and weight. She never looked different to me until recently. She has never had problems with pain or doing any activities or lifting. The only thing she mentioned is that she could never get a bra to fit properly!
I was so encouraged to hear from Shelley (previous post). I wish I could speak with more people who had the surgery with a good outcome. Maybe Shelley know of other cases. I have a 2nd consult with an ortho surgeon in September. He is not pushy and even said I should wait to have the surgery until my youngest (18 mos.) is in preschool. I feel like that gives me time to do my research and get a game plan together. I go back and forth between having and not having surgery.
Becky

[Karen Ocker]

having /not having surgery

The point is if the curves are progressing now they will not stop-no matter what. In my case the progression was gradual but by middle age the progression accellerated--sort of like a ball going down the hill--faster and faster.

Though it is never an emergency the problem needs to be addressed; just because it is ignored does NOT mean it will stop or go away.

[shelley]

Hi, Hopeful and Lostfan,
Based on the various studies done, it appears that the majority of people undergoing scoliosis surgery are satisfied with the outcome. The people best able to reassure you are those people who have had surgery with the surgeon you select. I recall visiting a girl in my area who had surgery about a year before my surgery. She and her family convinced us that this was my best option for a long and healthy life. Similarly, after my surgery I recall meeting with a few families to share our experiences and answer their questions. Hopefully when you select a scoliosis surgeon, you will be able to meet with his/her former patients and obtain some reassurance.
And now, some answers for Hopeful:
1. I work out at my local gym three times per week. I have been doing this for the past 5 years. BUT, I started out in PT, because I had no idea what I was capable of doing and I didn't want to hurt my back. Gradually and with the help of an excellent trainer, I have a program which utilizes the machines, free weights and other equipment in the gym (NO BENCH PRESSING!) as well as stretching and balancing exercises. I am 53 years old, 5' 5 1/2'' tall and weigh 118 lbs.
2. Desk job.
3. No.
P.S. I can bend over and touch the floor with my fingers, without bending my knees.

[joyfull]

54, never had surgery

This is my first post ever! I've been living my life just fine and hadn't given that much thought to my scoliosis until now.

I'm 54 and have two sons. My curve was 80 degrees when it was last measured a year ago. I wore a brace as a kid but it didn't do much. Surgery was recommended when I was 21 and again about 12 years ago. I had no pain and felt fine, so I couldn't bring myself to go through with it. I actually went to another surgeon at that time who said it wouldn't be worth the difficulty of the recovery since I've managed so well.

Now I'm experiencing some difficulty breathing. I still hike but can't keep us so well with my friends.

I'm looking into alternative treatments like the Clear Institute program. Does anyone know anything about a Dr. Gary Deutchman in New York?

The surgery seems like such a scary procedure! It is encouraging to hear that some older people went through it and had good results.

It's also encouraging to hear about a woman of 87 with scoliosis, since Dr. Woggon's website quotes a study that says that on the average scoliosis reduces the lifespan by 14 years!

I'd appreciate any help.

Thanks.54, never had surgery

[GHD1959]

lifespan cut???

Is it really true scoliosis reduces the lifespan by 14 years?

[magicman]

Is it really true scoliosis reduces the lifespan by 14 years?

I've never heard about this. In fact if you search on the web there was a 50 yr follow up on patients with untreated scoliosis by Stuart Weinstein and it found that scoliosis did not effect life expectancy or reduce prospects of marriage and children and having a career. This was for adolescent idiopathic scoliosis and countered earlier studies which painted a bleaker picture. Early onset scoliosis is I understand different and can lead to serious health problems and reduced life expectency if untreated. I think if a curve goes over 100 degrees then it can lead to an earlier death but this does not usually happen with ais. I do think that the lady above with an 80 degree curve needs to keep a check on the situation though in case the curve worsens.

[lelc2002@yahoo]

Joyful--
I am a little younger, but not much at 46.. my thorocolumbar curve was 95. I had surgery Aug 1st & I believe it was reduced to 58 or about that. I also have a compensatory thoracic curve in the 50's. I really feel so much better even as I now recover. I can really see the difference of 2 inches added to my waist! I feel I even breath better now! Prior to the operation, I felt so tight & cramped in my mid section... My other issue was I had horrible acid reflux & always had a terrible cough on initially swallowing anythg..Since surgery, I have no digestive problems & can't remember the last time I coughed! Surgery, in my case, was the right decision! My recovery while not completely pain-free has been very smooth. I am extremely thkful that I found a surgeon who could help me! As in my case, I think you will really know when you need to look into surgery. I was not in any severe pain throughout my history of scoliosis but the digestive issues/tightness in mid-section & large hump all slowed me down where by last year I was basically sitting watching my 2 boys play & I just could'nt join in! In the future, I hope I can play' again! take care, Ly
aug 1,2006 surgery-Dr. Boachie/Dr. Kim@HSS inNYC
fused T-11 to S-5, plus my 'hump' is gone...!!!
http://lynnebackattack.blogspot.com

[lostfan]

I too read that study on-line by Stuart Weinstein and I felt encouraged by it. You really don't hear much about people who choose NOT to have surgery and how they are coping. I wish more would post on this forum but they probably don't sit around and think about it constantly.

I had an MRI today and am waiting on an upcoming appointment for a 2nd opinion. Some days I just get so tired of thinking about all this scoli stuff and want to go back to just living day to day and not thinking about it 24/7. I was checked 10 years ago and then didn't worry about it much until this past year since I know I'm getting older and need to make up my mind.

Even though surgeries turn out in the end and the recoveries seem to go smooth for most people on this board it just seems like so much to put your body through....the long hours under anesthesia and being on a respirator...and of course the pain. There is always that minute chance that I won't be OK....and do I want to risk my kids being orphaned now or should I worry about the scoli when I'm 60 or 70 and deal with it then.

I think it's encouraging about the 87 y.o also. Especially if it wasn't that noticible all her life. I am not very active...no hiking or anything like that, no sports, no skiing (we're a boring family) so I wonder if shortness of breath would even be an issue for me. I have grandprents that are 80 and 82 and my pap has a bad knee and can't walk much plus has to wear a bag for his bladder and my gram is blind from macular degeneration and doesn't do much...I guess my point is that even w/o scoli I may not be running marathons when I'm in my 80's anyhow. They go out to dinner and go visiting and to church and that's about the extent of it as do many other elderly people I know.

Anyone else feeling this way? And is so, what are your plans?

Where is that red EASY button they always show on TV!!!

[magicman]

lostfan, I think the only thing that you can do is to listen to the doctor's advice. Surgeon's do not put people through the surgery for no good reason and in my understanding take a more conservative approach with adults than teenagers. If there is a good chance of your curve staying relatively stable then I supect their advice will be to live with it. I think they will only advise surgery if there is a risk of significant progression. What I will say to you is that while there are obvious risks with surgery there are significant benefits also. You have to gather all the information you need and then make an informed choice.

Best wishes

magicman

[Pips]

I am another (almost) oldie at 42. I had surgery in Fenruary this year. My curves had been pretty stable - just progressing 1 or 2 degrees a year but in the last 2 years before surgery my lumbar curve progressed 12 degrees. My alignment went out so far, eventually the extra leverage my head placed on my spine accelerated progression of the curve . The surgery has been a huge success. Like Lynne I had reflux problems and my lung function was starting to go.

Cosmetic reasons are no reason at all to do this kind of surgery, but the impact on your internal organs with a big curve can be great. Here in the UK they won't normally operate for scoliosis past 50 years of age because of bone density so it's worth making a decision as early as you can.

Trying to second guess the future is never easy, but I think most of us older patients will say that we are glad we had it done. After many sleepless nights beforehand, I wouldn't change my decision for the world. It has given me a future I feared I might never have.

[macky]

this was posted by christophe in another thread

I read some statistic that scoliosis patients live an average of 14 years less than the rest of the population.


I dont know where christophe got that statistic from, it is under Dr Woggan and the Clear Institute, but I really wish they had not bothered to tell me.
I am just going to keep positive and pretend I didnt read it.

Thankyou Magicman your post added 14 years back on to my life span.

Joyful..You are having trouble breathing. I really think you need to see a scoliosis specialist to find out exactly what is going on. Then you will have all the facts to make an informed decision. That I feel applies to lostfan and others who have not had surgery. They really need to get all the facts from specialists first and then as I said make a decision.

I feel that really the pain side of scoliosis without surgery is not as important as the damage it does to the body.
When women go through menapause and have the problems associated with that, those who have not had surgery, just one for instance osteoporosis, I am just so glad I had my surgery.
OK I am in pain but that I can cope with, hard sometimes but I cope never the less. Also I had surgery 40years ago, big difference now.
I totally agree with Karen Ockers comments.

My opinion only everyone. xx

Macky

[LindaRacine]

Hi Macky...

I couldn't find anything on the Clear Institute's website about this. If you have a specific quote, I'd love to see it to see if I can verify it.

I've just done a lot of searching on PubMed, and can't find a single research paper that shows that the life expectancy of someone with idiopathic scoliosis is any less than the norm. Alternative websites are fairly famous for trying to scare people into trying their treatment, and I suspect that that's may be what's behind this.

Thanks.

Regards,
Linda

[sweetness514]

I too read that study on-line by Stuart Weinstein and I felt encouraged by it. You really don't hear much about people who choose NOT to have surgery and how they are coping. I wish more would post on this forum but they probably don't sit around and think about it constantly.

I had an MRI today and am waiting on an upcoming appointment for a 2nd opinion. Some days I just get so tired of thinking about all this scoli stuff and want to go back to just living day to day and not thinking about it 24/7. I was checked 10 years ago and then didn't worry about it much until this past year since I know I'm getting older and need to make up my mind.

Even though surgeries turn out in the end and the recoveries seem to go smooth for most people on this board it just seems like so much to put your body through....the long hours under anesthesia and being on a respirator...and of course the pain. There is always that minute chance that I won't be OK....and do I want to risk my kids being orphaned now or should I worry about the scoli when I'm 60 or 70 and deal with it then.

I think it's encouraging about the 87 y.o also. Especially if it wasn't that noticible all her life. I am not very active...no hiking or anything like that, no sports, no skiing (we're a boring family) so I wonder if shortness of breath would even be an issue for me. I have grandprents that are 80 and 82 and my pap has a bad knee and can't walk much plus has to wear a bag for his bladder and my gram is blind from macular degeneration and doesn't do much...I guess my point is that even w/o scoli I may not be running marathons when I'm in my 80's anyhow. They go out to dinner and go visiting and to church and that's about the extent of it as do many other elderly people I know.

Anyone else feeling this way? And is so, what are your plans?

Where is that red EASY button they always show on TV!!!

I think you have to continue to gather info from doctors and from the internet, get the good and the bad. I thought I was home free after 6 years of my first surgery but all broke in my back(hardware) due to pseudarthrosis, and no doctor suspected my surgery hadn't been successful since even after the hardware failed no tests showed the non union and hardware breakage, until they opened me up. So due to this I am still having problems with pain and instability with my hardware(even if they fixed as much as they could) and looking back I think it would have been wiser of me to wait, as doctors experiment and the technology behind this surgery evolves every year. I know a lot of people who are elderly that have scoliosis and kyphosis and they are living with it and are active. So it's different for many people.

Good luck with your decision.