Scoliosis Support Group

Scoliosis affects all ages. Unlike the naturally occurring curves in the spine, scoliosis causes the spine to curve abnormally to the left or right.

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/ Scoliosis Support Group

Hi Everyone new here a lil about me

meggers2004
meggers2004
Hey everyone I'm Meg. I found a link to this website through one of the scoliosis pages I was looking at on facebook. To start, I was diagnosed with scoliosis when I was in 6th grade, I think at the time I had a 42 degree curve only in my lower back. The doctor I went to at the time was older and didn't seem too concerned he just said to watch it till I turned 18 and that if it hadn't progressed by then, he didn't think it would anymore since I probably wouldn't grow anymore. So when I turned 18 he released me from his care and everything was ok. I never really had any pain when I was younger or into my early 20's so I just kind of forgot about it. It started to become a problem again when I was pregnant with my son back in 2008. I started to have a lot of lower back pain but I wasn't sure if it was just a normal pregnancy pain. When I went into labor with my son scoliosis started to get in the way literally because I was unable to get an epidural (Spelling?) because my back was too crooked. After that I've pretty much had pain everyday for the last 5 years. I really hate going to doctors so I always put off getting anything done about it, and I honestly didn't think it had gotten much worse till just recently people started noticing how much I leaned to the left when I walk and that I've also developed a hump on my right shoulder blade. Back in September I finally starting checking into doctors in my area because the pain was becoming really bad and I was having breathing problems and I thought that was odd since I'm pretty healthy and not really overweight. After all was said and done the doctor said the curve in my lower spine is no 70 degrees and I've also got a curve in the top part of my spine not sure of the number, and I'm having surgery November 19th and I'm extremely nervous about it. I would have never gotten the surgery but the pain is getting worse by the day and my rib cage is actually being pushed by my spine and compressing one of my lungs. And its impossible in the state I live in to try and get treated for pain because most doctors think everyone is trying to scam them because soooo many people abuse pain medicine around here, and its such a hassle to try and get anything done. Well I feel like I just typed a book, but I'm glad I found this site because no one I knows has scoliosis or has ever had this surgery. Hoping for the best !
deleted_user
deleted_user
Hi Meggers and welcome to the group. As I was reading your words, I could have been writing it except for getting pregnant part. I don't have kids. The doctors told me the same thing that it probably wouldn't curve anymore after 18. I am 57 and my curve is now 63 from
56. The day of your surgery I have an appointment with my Dr. to discuss surgery. I noticed you are in Kentucky. I am in middle TN and go to Vanderbilt for my doctors. I have even looked at some of the surgery videos on utube. I am ready to get rid of the pain and have a straighter back. I will pray for you.*** Jackie
mamamoe
mamamoe
Hi Meggers,
I was diagnosed at 13 but was told my scoliosis was not serious and didn't need any follow up. I have struggled with pain my whole life and am now 53. I've done chirop, massage and exercise to help the pain and now I have other chronic health probs too. The pain gets worse as I get older. At this point, I'm just doing the best I can. Medically the drs around here either want to do surgery or give pain meds. I wish you the best. I do learn a lot from DS and hopefully you will too.
meggers2004
meggers2004
Thanks for the prayers Jackie "wildflower"!! I'm excited for my surgery in hopes of getting rid of the pain and being able to be more active with my five year old son, but I'm also nervous because I've heard so much recently about people having even more problems after their surgery than they did before, but I'm just leaving it in God's hands and hoping for the best. Good luck with your appointment when you go.

Mamamoe, I can only imagine how bad your pain must be because mine is really getting worse with time and I'm only 28. Add in your other health problems and I know it's tough. I really hope that I don't have to be on pain meds for too long bc it does seem to be an issue with people. I hope I can get a lot from DS also during this time. Thanks for ur comments ladies!!!
deleted_user
deleted_user
Could someone clear something up for me? I am 57 yrs old and was diagnosed with scoliosis in my teens. The dr. said it was mild and never did anything. I had occasional cramps and aches but was not too concerned at that young age. Now I'm 57 and have been having lower back pain. I don't know what degree my curve is as no dr. ever told me. It's uncomfortable to lie down at night. I'm worried I won't be able to sleep when I'm older from the discomfort.

I always thought a person could only have surgery for scoliosis when they were young and the spine was not as hard. So from reading your posts, people in their 50's can get surgery?? I always thought it was too late for me.
meggers2004
meggers2004
Well my dr told me that he usually only does this surgery on teenagers and ladies that are in their 60's and 70's. and he's not the only one that has told me many elderly women have this surgery, bc that's when it gets worse apparently. I guess mines just curving at a more rapid rate than most peoples
deleted_user
deleted_user
Meg, may I ask exactly what your surgery will entail? I read somewhere that some people have several ribs removed. Does your surgery involve putting in a rod of some sort? I am so curious as I always thought surgery was only for the very young while their spines were not as hard. I'm glad to know there are options out there.

I am currently trying physical therapy and I'm not sure if things are improving. Will try it a bit longer.

Good luck to you. Will say a prayer for a successful surgery. Hope all goes well. Take care.
lovemy2bellas
lovemy2bellas
Hi Meg! I have a very similar story to yours. I was actually diagnosed at around six with scoliosis but my mother never bothered with a brace or surgery because she was hopeful it would correct itself. By the time I was nineteen my curve was around forty five degrees and was enough to keep the navy from accepting me because I was a liability. At twenty seven I had my first daughter and then my second right after. This was in 2006. In 2009 I went to the doctor and my curve was at 63 degrees. I was going to get the surgery and chickened out. This year I went again because the lower back pain was too much and my curve had gotten ten degrees worse at 73, and my ribs were shifting with my spine. So I gave in and just got the surgery October 15th. I am recovering well. Some days or better than others and the pain meds are what are getting me through as well as the bone stimulator and the back brace. You are making such a brave and necessary decision for you and your family. We need to be here for our babies and without the surgery our lungs and heart would suffer a lot earlier then they are suppose to. I hope your surgery is successful as mine was. The younger you are the better your chances are of a quick recovery. I am happy to answer any questions you have.
klirones
klirones
Hi Meggers. I was diagnosed at about 15 and the surgery at that time was six months in a body cast. We got a second opinion and the doc said wait 5 years because of the advances that were being made in the surgery. Well I waited a little longer because of college and I wanted to get my pregnacies out of the way first. The orthopedic doc I saw explained that there are compensated and uncompensated cases. If you are uncompensated you will continue to curve until your lungs are crushed. I was uncompensatedd. I had my surgery at 27 and it was successful. I was lucky enough to end up with a very prominant surgeon. It has not been pain free but my spine is fused all the way down and is superstrong. I stay away from rollercoasters and can't really run but I have had a very full and active life.
Kerry
LavenderHippie
LavenderHippie
Hi, i'm new here, too...

gonna read your other post to see how you're doing post-op.

:)
meggers2004
meggers2004
I would just like to say that's for everyones kind thoughts and words! I'm a lil over 3 weeks post op and I'm still having quite a bit of pain but I can already tell a difference! I am no longer having pain in my lower back or down my legs like I was before the surgery I think the pain I'm having now is just the muscles healing and everything settling for being so violated for such a big surgery. I know every situation is different and a lot of people say scoliosis surgery should be your last resort but for me I had no other choice and I've yet to regret my choice! You can go look at my pics and see my xrays and also see my scar and see how much of my spine was fused. Maybe someday down the road it might get worse but all I care about is getting through my sons youth and being able to be active with him, and after that I don't care much. I'll deal with it when it comes. I'm being cautiously optimistic right now but just wanted to say thanks for everyones supports. Its been one hell of a ride and i'm sure it's only going to get longer. :) Happy Friday the 13th everyone!
lovemy2bellas
lovemy2bellas
YAAY! I'm so happy for you that you are doing well. I know you're still in pain but that's great that its decreased in your legs and lower back! What meds do they have you on to get through the pain?
meggers2004
meggers2004
Right now im taking 2 10mg Percocet every 4-6 hrs. apparently my dr is very aggressive bc he said at 8 weeks post op he hopes to have me off pain meds and that scares me to death! They didn't even have me on a pain pump in the hospital I was given medicine orally from the beginning and none of the nurses could understand why the dr did that.. luckily I don't remember much of it!
lovemy2bellas
lovemy2bellas
I actually stopped the oxycotin and oxycodone because my cycle just stopped out of nowhere. I had my cycle a day after my surgery in October, and then in November I didnt get it. So i googled it and sure enough other women were reporting the same side effects. So i started relying on Aleve, four pills a day, and my cycle started up again this month. I want to go back to work next week as a substitute teacher so I'm actually considering going back on the oxycodone because to be constantly on the move, I'm a little nervous to just rely on Aleve. I'm also a little nervous as to whether I'm biting off more than I can chew by going to work so soon, but we are drowning in debt.
meggers2004
meggers2004
while I appreciate your very detailed comment on what I should have done neo, it seems it's a bit too late. I, in fact, did a lot of research on my condition and have been dealing with it for 10 years. The method you talk about was never once mentioned over the years by the many many doctors I have been seen by. One being a very close family friend and I highly doubt he would suggest the procedure I had done if it wasn't necessary. Do you have scoliosis? If not, then you don't know the pain I dealt with on a daily basis. It was maddening. I'm 28 and felt I was out of options and out of time, my curve was only getting worse and I would be happy to email u my xrays pre surgery but having been measured by 3 different doctors I don't think that every single one of them got the degree of my curve wrong having never known what the previous doctor had said. I only wish I had the time to be braced and do all kinds of physical therapy, but I am a single mother with a 5 year old son and all that mattered was getting back to him as quickly as possible. All of this may fail within a few years but it'll be worth it because I am already so much better than I was and a few years of relief will be worth it to me even if I have to keep having the surgery just to get a little relief.
deleted_user
deleted_user
Hello Meggers...! My mother discovered that I had scoliosis when I was a teenager and she was fitting a dress that she was making for me. One shoulder blade stuck out further than the other. She took me to a doctor, but when he said that I would have to wear a brace, I declined. One of my very close friends was wearing a brace, and she hated it, especially at bath time.

Now, 40 years later, I wish I had gotten the brace. My whole body shape has changed. I used to have a cute figure (34-22-36), but now one hip is about 4" higher than the other, my entire mid-section turns to the front a little, and I often get cramps and muscle spasms in my sides from turning left to right or the other way around. I also have very poor posture because I cannot ever straighten up completely.

I also have Osteoarthritis in my hands, neck, low back, hips, and right knee. So, not only am I in constant pain from the scoliosis, but I also have to deal with the pain associated with Osteoarthritis. I walk with a walker all the time now, but will eventually be in a wheelchair. I also walk in "baby steps" because the arthritis in my hips is so bad.

Doctors in Houston, Texas are scared to death of the DEA, so they don't like prescribing opiate pain medications either. Instead, they send you to a pain management clinic which has doctors who specialize in pain control. The problem is that there are so many "pill mill" clinics with PAs that will prescribe controlled substance meds to anyone who can pay. Thus, the drug dealers and addicts can get anything they want and sell it on the street for a lot of money, while those of us who really need the treatment have such a hard time getting it. This is really a pet pieve of mine. It just makes me angry because I think that the DEA just has their approach to controlling these type of drugs backward. They need to shut down those "pill mill" clinics, and make it easier for legitimate doctors to take care of their patients' needs. ...I'm stepping off of my soap box now... LOL

I am so happy that you got the surgery and that it is working well for you! I wish the doctors had been able to do surgery on the spine to correct Scoliosis when I was young. Anything that you can do now to maintain your posture and eliminate the pain is a good thing.