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View Full Version : Anyone w/Severe scoliosis- no surgery?



Rosella
03-31-2005, 10:07 AM
I am 44 years old and have had scoliosis since I was 4. By age 11 every doctor I saw said I needed surgery, but my mother was deathly afraid of back surgery and chose not to do it. I believe my Tcurve at that time was 80 degrees.

I studied ballet, and became a dancer. I currently still perform, and run a dance studio. My back never bothered me until recently, when I started experiencing lower back pain. My massage therapist suggested that I go and see a specialist.

This I did, and the answer was that I have no choice but to have the surgery. In time my lung capacity will be compromised, pain will increase, and the longer I wait the strength of my bones will deteriorate (I have the beginning stage of osteopenia) and then I won't be able to have surgery.

I had xrays taken in 98, but they were never measured. I just had new x-rays taken- have no idea what the degree is now, but on the pictures my spine is about an inch away from the right side of my body. Obviously a severe curve- almost looks more like a box.

I'd like to know if there is anyone out there who had such an extensive surgery in their 40s and are now in their 60's to get an idea of long-term outcome. Doesn't make sense to go through something like this now only to run into more or different problems later.

Also, is there anyone out there with severe scoliosis who did not have surgery? How are they coping?

I know my spine is deformed, but my body has adapted to it for over 30 years. The organs, muscles, nerves... making such drastic changes can't be easily accepted by the body. Any thoughts, advice, info would be greatly appreciated!
:confused:
Rosella

LindaRacine
03-31-2005, 11:05 AM
Hi Rosella...

Although my curves weren't as extreme as yours probably is, I had surgery at the age of 42 and am now 55. I had a good outcome and many years without pain. Unfortunately, I have one disc below my fusion that is blown, so I now have lower back pain again.

It may be that you've managed to avoid any problems because you've been so physically active. This is totally my own theory but I believe that, as we age and lose muscle tone, we're less able to hold the spine in it's current position and so the curvature can increase.

I do know one woman in her late 70's with a relatively severe curve who avoided surgery. Unfortunately, she's now wishing that she'd had surgery when she was younger, and feels that it's not an option for her now.

Good luck with your decision.

Regards,
Linda

letty
03-31-2005, 11:59 AM
Rosella,

I consider myself under the category with severe scoliosis (68 degrees now) at age 57. I also consider myself fortunate because the scoliosis doesn't bother me and I don't bother it either. I don't know if I will regret my decision not to have surgery when I am 70 but for now, I don't want to fix what's not broken, so to speak. We are all different, My case is very unique from the others in this forum who benefitted from surgery. Let me know if I can be of further help.

Letty

Searching
03-31-2005, 06:14 PM
I improved my bone density by taking natural Progesterone. Progesterone stimulates the osteoblastic activity in the bones. Dr. John Lee has written several books on this topic. His website is: www.johnleemd.com. At 44 your hormones are declining. Read what this doctor has to say and find a doctor who will prescribe these bio-identical hormones for you. I'm not talking about progestins. They are synthetic. You can buy Progesterone cream over the counter. However, since you know you already have osteopenia, a prescription would be of more benefit.
You can check out my doctor's site: www.hotzehwc.com He is Houston.
Progesterone can also help with fibromyalgia. I have been taking bio-identical hormones, meaning bio- identical to human hormones, for over 5 yrs. I take Bi-est (80% estriol, 20% estradiol), Progesterone and Testosterone.
Good luck.

Angie M.
03-31-2005, 09:39 PM
Hi

This is my first time posting here. I was born with a twist really and had surgery at age four and wore like a corset thing for a while. Then at 12 I had (the year of hell) the halo traction, surgery and all that fun stuff. They used a bone from my hip to do the fusion. Now, I am 44 and have noticed that my lung capacity had decreased quite a bit and I just took a PFT test and I know I did not do well. Has anyone heard of anything that can be done to eliminate some of this breathing problem?

Also, I know I am reaplying to someone's post. I couldn't figure out how to post a new message, can someone tell me?

Also, I have read some of the postings and found them to be very helpful but I have one question. I am sure you have all experienced the cruelty of some people, the stares, I know I am 44 but this still really hurts me and I kind of feel like, Hey I went through hell to get where I am at and I end up usually having a horrible night where I either end up hating myself of just feeling bad. Any advice on how you all handle rude people or curious people?

Angie

phaden
03-31-2005, 11:08 PM
I couldn't figure out how to post a new message, can someone tell me?

Go the the Forum Home. Either jump from the dropdown menu at the bottom of every page, or click on this link: http://www.scoliosis.org/forum/index.php

From there, select a category for your message from the ones listed.

When you get to that page, there will be a "New Thread" button. Click on it and fill in all the boxes.

Cheers

Angie M.
03-31-2005, 11:59 PM
Thank you very much Patricia and Good luck with the surgery.

Angie

kimbo
04-01-2005, 07:21 AM
hi there rosella..
my story sounds very similar to yours.
i have had scoliosis since at least preteen,and at 23 went to a ortho doc who said my curve would get no worse..well..it has over time.
the sccoliosis did not affect me at all until the last couple of years my back felt tired, some minor pain so at my present age of 46 i went in and was upset to find my curve was 66 deg thorasic, 55 degree compensatory lumbar and was told all the same stuff you were told..
i have posted at this forum a few times..you can go back and read them but even tho my pain has increased these past few months..think partly from stress.i am not going to have surgery unless it is life threatening..i am a very active person and do not want to compromise my life unless i have to..seems many have had problems years after the surgery..only my opinion..but at this point in time..my pain is not enough to warrant my going in for a major surgery with long recovery..in the future i may change my mind..
you can email me with any ??
Take care, Kimbo

LindaRacine
04-01-2005, 12:24 PM
Angie...

Here's a poem for you:

So in this world
Of the simple and odd,
The bent and plain,
The unbalanced bod,
The imperfect people
And differently pawed,
Some live without love...
That's how they're flawed.

From "Flawed Dogs" by Berkeley Breathed

Regards,
Linda

Amazed
04-03-2005, 05:39 AM
I am 54 and never had anything done. I wish I had so I could breathe without the oxygen I drag about everywhere. I have big curves 150-88-55 and I get some pretty rude people. I don't like to go out much because I'm so uncomfortable. I hate what people say but I hate the stares more I think. OK it looks bad! I get that. Its an oxygen tank so I can breathe. My spine hump is ugly but yes its part of me. It does not contain anything but my misplaced organs and ribs etc. The hunchback is there to stay. No they can't cut it off. Yes I hurt sometimes. I just deal with it.

Celia
04-03-2005, 12:02 PM
Amazed,

Would a G*R*E*A*T B*I*G hug do ? :p





Celia

forseel76@yahoo
04-04-2005, 12:09 AM
Hello all,

My name is Lori and I had major surgeries starting in October 1967 at the University of Missouri Med. Center in Columbia, MO. My C curve was so severe at that time (I was 13 years old), it was difficult to walk for any length without stopping for breath. My heart and a lung was being crowded out. One shoulder and opposite hip higher than the other and of course one shoulder blade stuck out. The doctors said if I didn't have surgery I would definitely end up in a wheelchair and die an early death. I had 1 month of physical therapy at the Georgia Brown Blosser Home for Crippled Children in Marshall, MO before my first surgery. During the first operation a Harrington bar was placed along side my spine and I was placed on the "Foster Frame". The Stryker Frame was a joy compared to this thing. One month later a second surgery was done to "jack up my spine" some more and was placed on the Stryker Frame. I stayed on that frame until March. Yes, that was almost 6 months on the frame. During this time I lived with many other children in far worse condition than myself at the Blosser Home 150 miles from home. Talk about pain when I was finally allowed to get off that thing. It was awful! Then to top it off I developed a blood clot in my left leg and had to be down for another week or two. That set me back starting my freshman year at my high school back home in St. Joseph, MO. Evidentually I made progress and my world was all new again. However, sometime that following summer the crazy bar became loose and I had to have the surgery done all over again the following October. Once more I found myself on the Stryker frame for about 5 1/2 months. I had to learn to walk all over again. Thank goodness I did my junior year of high school at my high school - not at Blosser. Finally, my senior year that Harrington bar was removed in November 1970 (I only missed 2 weeks of school) and I was released from the care of U of MO Med Center by July, 1971. Still have that Harrington bar as a souvenir. My family and friends back home were a great support to me during all my time away from them. I am now 51 years old with 2 grown sons. The ortho surgeon, Dr. Stewart said I would not be able to deliver a child naturally and the gynecoligists said I would need to be bedfast for most of my pregnancies. They were all wrong. I had no unusual problems with my pregnancies and delivered the boys totally natural - a la' lamaze! Didn't want anymore surgeries or needles in my back. A few years ago I learned that the vertabrae are congenitally fused at C2-C3 which may have had a part in my curving spine. I believe during my surgeries some nerves were cut, so now I have minimal pain. Now I do have bone spurs at C3-C4 and along C5-C6 which are a pain, but I plan to put up with it as long as I can. It could be worse. I often wonder about the children I met at the Blosser Home. So many had little hope of ever walking out of that place as I did. There were other teens on Stryker frames when I was and I wonder how they are doing as adults. It's easier to go through this kind of surgery as a young person than as an adult. Anyone out there who spent time in the Blosser Home please let me know.

macdmc
04-07-2005, 10:55 AM
I have had scoliosis since I was 5 years of age. When my parents were told there was a 50-50 chance of being paralized for the rest of my life they didn't like the chances. They decided against a brace because it would stunt my growth. Almost 50 years ago that just wasn't a good option. So I have basically lived with it. I was fortunate to deliver two healthy sons with no signs of scoliosis. They are 29 & 25 now. A few years back I had some lower back pain and our family doctor sent me to a specialist. He prescribed a TENS Unit for me and I have to say that was a blessing. Using it regularly it is now down to just when I need it. He also prescribed a special brace for me to wear. I have to admit, you can't teach an old dog new tricks. I hated it and it hated me. Even with adjustments it just didn't work. I know my breathing isn't what it should be but I live with it. I still try to learn things about scoliosis every day. If you ever need to talk I'm here. I know what one of the people said about people being mean, yes they can but I believe that they have no idea how this happens and are just blindsighted by the looks of me. The one thing is that if a child asks about why my backs looks like it does I take the time to explain a little bit. Children only know what they hear and I have to admit that growing up there were only a very few that teased me. I don't know what I will face as I age but if I can get just one person to understand that I'm not a freak and I hug and talk just like them, then its worth it. Write anytime,
Donna

Rosella
04-07-2005, 01:21 PM
Thank you for your reply! I'm struggling with all the info I'm collecting. At this point I still don't know what degree my curve is, but I guess it's over 80, since that's what it was when I was 11. Just went for another bone density, and pulminary function test- that went very well- was in the high average range, I think- didn't get the actual result yet. I'm realizing how very lucky I am in that probably due to dancing all my life it's kept me pretty erect- even when I wear a leotard, while you can tell that there's something wrong with my back, but it's nothing that draws attention. My heart goes out to people that have to deal with the harshness of unkind or uneducated people. You are doing a wonderful thing to help teach children about life and kindness and understanding.
So far the doctors that I have seen wouldn't think of doing anything but surgery- right now I guess I'll just keep searching, keep as well and active as I can, and take things 1 day at a time!

macdmc
04-07-2005, 08:39 PM
You are so right about the dance and the exercise that you do. Up until 4 years ago, I had weighed 110 for as long as I can remember. Now about 50 pounds heavier and it sure does tell on me. I have just started a small exercise program and hope that will get off this extra weight. It is important to be thinner with this extra baggage that I carry.
I don't blame you for not wanting surgery so keep up with that dancing girl! The one thing I always remember is when a new doctor comes into the picture it seems like their eyes light up when they take a look. To be truthful, that really scares me. Of course when they ask questions and I answer them as truthful as I can with what other doctors have told me, they just look dumbfounded at me. That really bothers me!
Like I said before, write when you can.
Donna

bubbles1^
10-16-2005, 07:58 PM
I know exactly how you all feel. I have scoliosis since I was six months old. When I went to see my scoliosis specialist he sent me to do a plumnary function test (that is the breathing test right). I didn't do very well on it. I can't walk across the room without losing my breath. I use to love to walk, my mom always wonder why I did a lot of walking when I worked at a fast food resturant and had to stand on my feet in the drive thru all day, I told her that reliefs the pressure of back. Now I can't hardly stand to walk a far distant anymore. When I use to walk at least a mile to a mile and a half.