SpineUniverse Community Advice
Get help and share your story with others who know what you're going through.
Please register or log in to join the discussions!

Untreated scoliosis-issues

Started by jmmartin on 01/06/2011 12:13pm

Hi, my daughter is 12 and facing surgery for her 58 degree upper thorasic curvature due to scoliosis. She's been in a brace for 2 yrs, and it hasn't halted her progression. It's such a big surgery for such a little girl. I'm really torn.

Do any of you have untreated scoliosis as adults? If so, what are the main issues? I'm told she'll doubtfully reach 100 degrees so I'm not worried about the lung issues as much. I know her rib hump will worsen, but I'm not sure if the deformity is worth the risks of this surgery. She has no pain right now. I read from one person that they have major disc degeneration issues, arthritis, etc. due to untreated scoliosis. Not sure if this is common.

I know doing the surgery now is better for she's younger, more flexible, but in 30 years or so the surgeries will be so much better and she may never have all these painful problems they make you think she'll possibly have. If she does, then I say do the surgery then. Why put rods in her back for 20+ years for something that may or may not happen.

Any information on your issues if you have this and it's untreated would be very appreciated! Julie

Do you find this discussion helpful?
1

8 Responses

Like/Dislike
0

I am 56 yrs. old, and I, too, have scoliosis, and although it wasn't evident by looking at me, MRI's looked like a person at least 20 years older than I. I also have degenerative disc disease which was causing so much leg pain that I was forced into early retirement.

I had a spinal fusion in 2006 after the nerves that were pinched caused extreme leg cramps. Then I finally decided to have the rods put into my back to help with both problems in 2007. Not only did my legs continue to hurt me after surgery, but my back and hips caused me so much pain that I ended up on narcotics for four years. That surgery was just about the end of me.

I have heard that it has been perfected since then, but because your daughter is not in pain, I would not agree to such an extreme measure.

Like/Dislike
0

I have a different perspective than the previous post. I'm 60 years old, and a 20+ year post kidney transplant recipient. Since the transplant, I have developed other health issues, i.e., diabetes, hypertension, and cardiomyopathy. In recent years, I am now anaphylactic to the antibiotics cephalasporin (the drug most commonly used as a first line of defense against infections) and penicillin. Other than the hypertension, none of these health issues were evident when I was transplanted at the age of 40. Now, 20 years later, I've developed scoliosis (48 degrees two years ago) along with lumbar stenosis, and lumbar radiculopathy. Because of the curvature, I "tilt" to the left, and my left leg is about 1" to 1-1/2" shorter than my right, and my right hip is rotating. Within the past 2 years, the pain has become increasingly worse. The ability to do such simple things as standing at the stove and cooking; standing in the shower to bathe and wash my hair; sitting at my desk transcribing dictation is becoming harder to do because of the pain, and I fully expect to be totally disabled. I have gone through the epidural blocks, which for me were not successful. Through pain management I have done water therapy and land therapy, and am now taking Neurontin. No other options are being offered since every, and I mean every, doctor views me as a "high risk."

No one can make the decision whether surgery is best for your daughter now, or if it would be best to wait for advances in the treatment of scoliosis, other than you and your doctor(s). Knowledge is power ... so I encourage you to read, become informed, and find a team of doctor(s)/surgeon(s) you trust so that you can make the best informed decision on your daughter's behalf. If it were my child, I personally would want to know ... How medically destructive will living with 30 more years of scoliosis mean? Although they do not expect 100 degrees, how will any future deterioration impact her overall health? How much more difficult will the surgery be when she's 42? What other health risks is she pre-disposed to, which could develop, prohibiting surgery when she's 42?

As the saying goes, "hindsight is 20/20." Had I been aware, prior to the transplant, that I was going to develop scoliosis and live in daily pain to the point that it robs me of my quality of life, and then compounded by the other health issues that have since surfaced, in essence denying me options to improve my quality of life, I definitely would have pursued what was available at that time.

As for me and my situation today, I am not satisfied with my current lifestyle nor the prospects of what my life will be like within the next year or so. I'm constantly searching the internet to educate myself on not only what might be available but, more importantly, a facility and surgeon/doctor who is willing to at least offer me minimally invasive options to alleviate, or at least minimize, the pain, ultimately improving my quality of life.

My thoughts will be with you!

Like/Dislike
0

hi jmmartin when i read your post, tears came to my eyes, which is actually right at this moment. My baby sister was diagnose with scoliosis last year, shes thirteen now but shes small for her age, at first they said that we should let her exercise and eat high calcium foods, now they are saying that she needs surgery. The doctor said that she as passed the need for surgery because she near 40 degrees. I argued with him because I have read about the risk of the operation and of how it can affect people years later, I am going to seek a second opinion and to see if a chiropractor can help her get better. I don't want her to do this surgery unnecessarily, what if the progress of the turning of the spine stops? I want to watch it a little first.

The doctor says to do it now because its in its early stage. but i don't know what to do, my mother keeps grabbing her and holding on to her and crying, I feel bad like my life will never be the same again much less hers. I am so afraid for her, she so beautiful I want her to ave a normal life. I take care of her financially so most of it is up to me, she's depending on me to get her better and I am just scared. I replied to you to let you know that I understand what your going through. Im not her mother but shes my baby sister, i have spoiled her rotten from birth. I am so very sorry that your baby is at 58degrees but since i can't tell myself what do right now, I can't tell you either. They say the bigger the curve the more likely it is to progress. Well just have faith, just pray and hope and tell her that you love her more than ever now and how beautiful she is, my sister wrote to her diary saying that she's depressed, she's afraid of the twisting of her spine getting worse and affecting her health. She wrote that she does not want to look deformed, so i know that little girls want to grow up to be beautiful princesses. I bet your daughter wants that too. I wish you the best, take care of both of you.

Like/Dislike
0

hi jmmartin when i read your post, tears came to my eyes, which is actually right at this moment. My baby sister was diagnose with scoliosis last year, shes thirteen now but shes small for her age, at first they said that we should let her exercise and eat high calcium foods, now they are saying that she needs surgery. The doctor said that she as passed the need for surgery because she near 40 degrees. I argued with him because I have read about the risk of the operation and of how it can affect people years later, I am going to seek a second opinion and to see if a chiropractor can help her get better. I don't want her to do this surgery unnecessarily, what if the progress of the turning of the spine stops? I want to watch it a little first.

The doctor says to do it now because its in its early stage. but i don't know what to do, my mother keeps grabbing her and holding on to her and crying, I feel bad like my life will never be the same again much less hers. I am so afraid for her, she so beautiful I want her to ave a normal life. I take care of her financially so most of it is up to me, she's depending on me to get her better and I am just scared. I replied to you to let you know that I understand what your going through. Im not her mother but shes my baby sister, i have spoiled her rotten from birth. I am so very sorry that your baby is at 58degrees but since i can't tell myself what do right now, I can't tell you either. They say the bigger the curve the more likely it is to progress. Well just have faith, just pray and hope and tell her that you love her more than ever now and how beautiful she is, my sister wrote to her diary saying that she's depressed, she's afraid of the twisting of her spine getting worse and affecting her health. She wrote that she does not want to look deformed, so i know that little girls want to grow up to be beautiful princesses. I bet your daughter wants that too. I wish you the best, take care of both of you.

Like/Dislike
1

As a 50 year old with scoliosis that gets worse as I get older, i wish I had done something earlier and still may. My 13 year old daughter had surgery last june and is doing wonderfully. Her curve went from a 55 to 17 and she does not regret having the surgery. She did very well, stayed in the hospital 5 days and took maybe 1 pain pill after going home. She feels an occasion twinge of pain in her lower back, but nothing like she had before. good luck with your decision.

Like/Dislike
0

Julie,

I am a 60 year old woman with a 67 degree "S" curve that was diagnosed when I was 12 years old. They wanted to fuse my spine but they had just come out with the Milwaukee Brace and I decided to wear that instead of getting the surgery. I wore it until I stopped growing. That turned out to be from age 13 to 14. I never really had too many problems with my back over the years. My back gets tired but then I rest for a few minutes and I'm fine. I do not lift anything over 15 pounds. I looked into having my spine corrected with the Harrington rod surgery when I was in my 30's but decided that I was not in any pain, and there was no guarantee that I wouldn't have pain after the surgery.

My scoliosis has not limited my life in any way. I have worked full time, gave birth to three sons and raised them while attaining my degree (which I finally got at age 52).

I know of kids who have had this surgery and have done well. At least they don't have to go through life dealing with clothing issues - one pant leg longer than the other; shopping for shirts and dresses that don't accentuate the deformity, etc. But I have tried to keep my weight down, exercise every day and have done really well. I am a lot more flexible and active than most people my age, despite my curve. When I put on 20 pounds a few years ago I did end up with a herniated disc, but I had a laminectomy and recovered really well from that.

They have come a long way from fusing the spine for scoliosis and the current surgery seems to be successful. I just thought I would share my experience as a person who has gone through life without the surgery. I would talk to your daughter and see what she wants. I hope this helps.

Jean

Like/Dislike
0

Dear Julie,

I was diagnosed with Scoliosis when I was 12. I was borderline surgery, or wearing the brace. My parents finally let me make the final decision. I chose the brace. Surgery just scared me so badly. I wore the brace 23 hours a day, 7 days a week, until I stopped growing at the age of 16. My life as a child wasn't too bad, the worse thing was the teasing I received from other children. But other than that, I was able to play sports, join a band, swim, ect.. I also went to a chiropractor. Who helped me a lot.

My problems came after in adulthood. I had gained quite a bit of weight when I was pregnant with my 1st child. And I've had a very hard time getting that weight off. I had my first child at 20. It wasn't until years later, at the age of 32 I got injuried at work, lifting a case of 24 oz bottled soda and twisted the wrong way when I blew 2 discs. After being on pain medication for years, the doctor finally said that it was time for surgery. They removed and fused the L4-L5 Disc, and although the pain went away for a short period of time. It came back full force 2 years ago. By having that surgery it weakened my spine. I have recently went back to a chiropractor, which he informed me that I should not have had that surgery in the first place. My scoliosis is at or a little bit worse than it was when I was a child. In one way I wish I would have went ahead and had the surgery. I had another friend of mine who had the rod put up his spine as a child, and he has never regretted it. Nor has he had the problems that I have had. We are both now 42 years old. I just found out this last week, that my scoliosis is so bad that it's starting to affect my organs. I also have spurs on my vertebrae's, and I have discs that are losing their gel, they're flattening out causing my vertebrae's to grind together, pinching off nerves. My left leg is an inch shorter than my right leg. So I have to wear a lift in my shoe.
My parents really wanted me to have the surgery, and I wish I would have listened to them. I had no idea what could happen to me as an adult. It never occurred to me that this could get worse. I would suggest that you talk to more than one doctor, also talk to a chiropractor. And do not feel bad if you do decide that surgery is the best thing for her. Because you could be saving her from a whole bunch of health issues later on in life.
But I also realize that each case is different. But for me if I could go back in time, and know what I know today. I'd have the surgery.

Like/Dislike
0

I'm 61 and have a 60degree scoliosis. I have had a curve since a child. In 98 I have a lower back fusion which i really needed. I was dragging my left leg and in a lot of pain. They chipped out enough bone from my back so they did not take any from my hip. I had 6 months of no pain. then the pain began again. In 5 years my curve went from 14 to 55 degrees rotating. I need to have surgery to gain back the 2" I have lost and get rid of the pain. I would definitely get a 2 or 3 opinion. Your daughter is not in pain so that is a big plus.

SHOW MAIN MENU
SHOW SUB MENU
Cancel
Delete