teerrified of surgery

[Singer]

I'm a 50-year-old woman with a 55-degree curve with a rotating rib cage and from what I've been reading, it seems that surgery is probably inevitable for me. I'm scared to death to do this, even though it seems that alot of you got through it with flying colors. I have an apointment with a spine guy later this month...

Has anyone made the decision NOT to have surgery, even though their curve is severe? Many thanks for any advice or comments..

[Karen Ocker]

age 50

I left you a private message.

There is no need to enter old age with progressing deformity and disability which would have happened to me. Especially when women live to their 80's.
Karen

[nutmeg]

Hi Singer

I'm 48 years old, and have not had surgery, nor do I have any plans to. My curve was about 43 degrees when last measured (35 years ago!), and is probably a little larger now, with noticeable rotation, so most surgeons would describe it as severe, even if it is a little smaller than yours

There are two factors I think you need to consider before deciding whether to have surgery:

1. Are you experiencing any problems because of your scoliosis. I don't have any pain from mine, and my lung capacity is enough for me to lead an active life, including folk dancing and bush-walking.

2. Is your curve progressing significantly? Do you know how big it was when you stopped growing? Have you noticed any changes in the past few years? Are you noticeably shorter than you used to be.

You need to discuss these factors with the specialist whan you see him.

[aNdYc]

Hi NutMeg,

I also have scolosis about 50 degree thou and I do not feel any pain at all. But I am only 21 years old right now, how did u maintain it to not have any pain or prevent it from curving it fast? Specialists all told me that I need surgery because eventually, I will feel lots of pain and if my spine hits around 70 degree I will have hard time of breathing.

Andy

[nutmeg]

Hi Andy

I haven't done anything special to prevent my curve progressing. From what I have read on the Internet, current thinking is that:
If your curve is less than 40 degrees when you finish growing, the probable outcome is there will be no progression big enough to measure over the rest of your lifetime.
If your curve is between 40 and 50 degrees when you finish growing, you are likely to have very slow progression, maybe 10-20 degrees spread over the rest of your lifetime
If your curve is over 50 degrees when you finish growing you are likely to have more significant progression of 1-2 degrees per year, which works out at 50-100 degrees over the rest of your lifetime.

My curve falls in the middle group so statistically speaking my curve will only progress very slowly, and never get big enough to cause any real problems with my lungs.

If your curve has already reached 50 degrees, your risk of it progressing is statistically higher. But it is just statistics, there is no way of being 100% sure.

As for pain:
I didn't do anything special until I was in my early 40s, just tried to be generally "back aware" - very careful how and what I lift, no high-heeled shoes. I only had real pain in my back a couple of times, and both occasions were muscle strain after lifting things badly. I did have some discomfort occasionally, but no more than many "straight-backed" people.
Since then I have had some lessons in Alexander technique (I think you will find a few posts on this if you use the forums "Search" facility), and find that I now experience this discomfort less often.

Meg

[aNdYc]

Hi Meg,

Well, mine measures around 53 degree and I am 21 years old. So I guess it might be deadly if I dont do surgery...... this is such a tough decision because of I am afraid of long term effect or side effect of surgery. And I also well have to quit my job because of the long recuperation I need since I work in IT department where there are times I might need to move around 40 pound servers or 8 pounds of monitors. How long does it take for ppl that had surgery to carry these heavy stuff??

Andy

[Singer]

thanks for reply

Hi Nutmeg,

Thanks for your reply. It's encouraging that you are not experiencing much pain from a pretty significant curve. My curve was 25 degrees when it was measured 25 years ago, so it's progressing at a rate of about one degree per year. I've shrunk one inch (and I'm already very short!).

I do have pain when I do housework, but I am able to walk and hike easily. Also, sitting is painful after about a half an hour..sitting through movies or a long drive is difficult. there's no lung involvement yet but this is a big concern for me since I'm a professional singer.

I have an appointment with a scoliosis specialist on Feb. 22 -- looking forward to his assessment. I'm just not mentally ready to have surgery anytime soon. Maybe in a year or two ...but definitely not this year.

[lelc2002@yahoo]

Hi Singer,
I felt just like you. Scared to death about surgery. I thought I would never do it. Yet the reason I went in to get checked was because In 3 yrs time I was very aware of changes in my body. The hump got bigger & I felt very crooked on getting up in the morning. I always had to straighten out. My digestion was just wierd & scared me to death. I got bad heartburn a lot & felt full after eating very little. I felt sick to my stomach if I bent over to tie my son's sneakers! I knew I felt shorter in a way, but did'nt dwell on it. When I went in to be checked & the nurse measured me, I was 5'4" ( was 5'8" in my 20's.) Then I saw my x-rays up on the screen. This is when I faced the issue(& cried) . My husband & I thought we would see how I was in a year's time. But after a lot of soul searching, I knew it was time. For me, personally, if I was gonna do it then I could'nt go more than 2 yrs in waiting & thking about it. I'll have surgery this August. I also found a surgeon I feel 100%confident with. that's a big part of it... You'll find what's best for you as you go on....

[LindaRacine]

Hi Meg,

Well, mine measures around 53 degree and I am 21 years old. So I guess it might be deadly if I dont do surgery...... this is such a tough decision because of I am afraid of long term effect or side effect of surgery. And I also well have to quit my job because of the long recuperation I need since I work in IT department where there are times I might need to move around 40 pound servers or 8 pounds of monitors. How long does it take for ppl that had surgery to carry these heavy stuff??

Andy

Hi Andy...

I'm guessing that most surgeons will tell you that you won't be able to lift 40 pounds until at least 6-12 months post-op. However, you should not have to quit your job. You can get short-term disability after your surgery, and then hopefully, your employer can figure out a way for you to return to work without having to lift anything heavy for awhile.

--Linda

[Singer]

thanks for reply

Hi lelc2002, thanks for writing. I don't have anywhere near the number of symptoms you do....YET. I'll be extremely interested to hear how your surgery goes this August. You'll give us a blow-by-blow account, right??

[Karen Ocker]

For Nutmeg/curve progression

"My curve falls in the middle group so statistically speaking my curve will only progress very slowly, and never get big enough to cause any real problems with my lungs."

Meg:
Just keep an eye on it. When were you last measured?

My progression of a FUSED, UNINSTRUMENTED, curve was so insidious I never expected to need surgery at age 60. I did PILATES faithfully for 4 years before my surgery, do not have osteoporosis and never smoked. At age 52 I measured(thoracic) 62 degrees and age 59 it was 80 degrees. My unfused lumbar curve went from 20 degrees to 40 degrees in 20 years: one degree a year meant doubling of that curve. I really didn't have that much pain, but began to have rapidly accellerated breathlessness--and nothing I did could help it.

Where did you get that info about curves not progressing in adulthood? There is no GUARANTEE that will not as many of us have seen here. I also see it in my mom. She had the slightest curve when I was in my teens; now at 89 she is really twisted.
Please share with us where you got those statistics.
Thanks,
Karen

[nutmeg]

Karen

As I said in my earlier post my curve was last measured 35 years ago. I do not intend to have X-rays just to measure the curve. I do monitor things like my height (unchanged over those 35 years) and visual appearance.

Here are links to some of the web pages I read:
http://www.fpnotebook.com/ORT394.htm
http://www.aafp.org/afp/20020501/1817.html
http://www.findarticles.com/p/articl...65/ai_85285676

As far as I can tell they refer only to progression in unfused spines.

I certainly never said anything about guarantees - on the contrary I use the words probable, likely, statistically etc.

There is no guarantee the train I catch tonight won't crash, but, for me, the benefits of catching the train outweigh the possible risk.

Similarly, for me, the benefits of not having surgery outweigh the possible risk.

Meg

[lelc2002@yahoo]

Hi singer---I will keep in touch thru this whole deal. I don't know if I'll report on the hospital part! I thk Spine-whine did an excellent job on that!
Surgery is a Big decision. You seem like your symptoms are'nt bad so just monitor it. For me, it's like a car(old car), you know when something ain't right when you are driving it. Your body just feels different. My blog
http://lynnebackattack.blogspot.com learningcurves

[Karen Ocker]

curve progression predictions/adult scoliosis quality of life

Meg:

I guess I was unlucky.

I did read those articles but the sources used in their preparation were rather old one was over 30 years old and we have much more understanding nowadays.

Also that site is for GPs who really are not suitable to fully assess scoliosis since scoliosis is a sub-speciality of orthopedics.

Here is an article disputing predictive formulas for curve progression(from the National Library of Medicine:

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

CONCLUSIONS: The results of this study challenge the existence of a typical scoliotic evolution pattern and suggest that scoliotic evolution is quite variable and patient specific.

Here's a recent study on un-treated adult scoliosis: http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum


CONCLUSION: Our data clearly demonstrate the impact that adult scoliosis has on a patient's perception of health. The severity of this impact is strikingly apparent in the SF-36 scores when compared to benchmark data on patients with comorbid conditions such as back pain and hypertension. It is our conclusion that adult scoliosis is becoming a medical condition of significant impact, affecting the fastest growing section of our society to a previously unrecognized degree.

[letty]

No surgery for me

Well, well, well, it's been a long time I haven't logged in. I am now 58 years old, going on 59 this year. With 67 degrees thoracic curve, I lead a vey normal life, full time job, enjoying grandkids and no plans to get surgery. I mean, no pain and no limitations (although the hump is quite noticeable). I do exercise on my own (walk a lot) and maintain 120 lbs. weight. Doctor told me to monitor the progression and at this point, he doesn't recommend surgery. Hope this helps those who are in the same boat as me.

Letty