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Connie
09-07-2004, 11:09 PM
I would like to say that I thank God for finding this site. I have scoliosis, which was discovered during a routine screeing back in grade school. I am now 37, soon to be 38 on the 25th of this month and I have never been seen for this condition. Although I really feel that I need to, as it seems to be getting worse. The curvature has gotten worse, with rotation of the rib cage. I can't seem to walk in heels too much anymore without walking like I'm losing my balance. It seems to be that way when I wear flat shoes as well.

I really didn't know the effects that this condition could have on your life and really I'm still learning. Sometimes I do feel like my rib cage is rotating to the point where I sometimes have chest pain, very slight pain. I know I need to go and see a specialist because it seems to be getting worse and I've just started to notice changes in my body. These changes are obviously happening over a period of time, but the issue with my gait seems to have just started a little over a year and a half ago.

Anyway, just want to say that I'm glad I found this website and just to know that there are other people out there that are going through the same thing. No one in my group of friends or relatives, other than my mother, have this condition so I feel like the lone ranger here. I'm also a very private person so I usually don't discuss this deformity with anyone else. Now I feel like I have others to share this with. Thank you for sharing your stories.

Lexy
09-08-2004, 03:38 PM
Connie,

I am glad you found this website as well. I have a double curvature of the spine with a rotation that was also discovered when I was in grade school. I wore a back brace for about 3.5 years which did not correct the condition but balanced my shoulders and my hips. After college I started having more pain and the curvature is slowly progressing. I am now scheduled to have surgery in November. If I was you I would get it checked out. I've heard that a progressing curvature in the thoracic region can cause heart and lung complications. My doctor's websit is www.consultingorthopedists.com. his name is Alexis Shelakov and he performs about four surgeries a week. I've heard there is only a handful of doctors like him in the world. I also thank the Lord I found this webite. I feel like I have a connection with everybody because we all have at least one thing in common, scoliosis.

MaryK
09-08-2004, 07:23 PM
Hi! Having your back checked out by a good surgeon is a very good idea. My dad had/has scoliosis with kyphosis (hunchback) and he started to have heart problems. The curve takes away room the heart and lungs need to work in. There are different versions of the herrington rod availible now and different surgeries as well. Just avoid the fiberglass rods!

Connie
09-08-2004, 07:46 PM
Thank you ladies for replying to my post on this site. It is just so nice to be able to talk with others who are going through the same ordeal. I realize that I need to take action now, as I have already waited too long. Like I said, only by reading different articles on the internet did I know some of the complications that can occur from this condition. I always seem to let work and home-life get in the way of me just taking care of myself. As my best friend always tells me, if I don't take care of me then I can't expect to take care of anyone else.

The bad part about it is that I've never even spoken to her about it either. But now I feel more comfortable talking to others who can share my pain, literally ;)


God Bless

farokie
09-08-2004, 08:25 PM
Hi Ladies,

What a Godsend this site is! It's so nice to find out I'm not alone.

God Bless All of You!!

Danite
09-14-2004, 03:37 PM
Your right about the heart and numerous other problems you can have with severe scoliosis, my heart and a couple other internal organs are in slightly different places because of my scoliosis. I have learned more from this sight (honest) then any others, I believe that individuals with Scoliosis are the one's with the experience and are living the life. We know what it feels like and what the results are, again I appreciate the NSF Forums and look forward of contributing and learning....thanks.

farokie
09-14-2004, 07:01 PM
I was diagnosed last year with scoliosis and 4 bad disc. I've had symptoms since the 3rd grade (I'll be 50 tomorrow). Two years ago I took a fall that resulted in a broken elbow. The elbow healed with no problem, but I haven't had a good back day since. Sleep, housework, shopping have become very difficult. My back has always been a problem, but now it has a name!! The diagnosis was quite a shock to me, but it seems that I haven't truly concentrated on anything since the fall. My back/hip/leg/foot are constantly on my mind. Is this common? Will it pass when I come to terms with it?

LindaRacine
09-14-2004, 07:05 PM
Hi Farokie...

I can't answer the question you asked, but I found myself wondering if you have osteoporosis. If you have poor bone quality, it's certainly possible that you experienced one or more vertebral fractures when you fell. Are you planning on seeing a scoliosis specialist?

Regards,
Linda

farokie
09-14-2004, 07:16 PM
The elbow break came from a fall down a staircase (my first broken bone). The disc are 2 above and 2 below the curve in my spine. Is that not "normal" for scoliosis. My doctor(s) didn't really elaborate, but presented this as not unusual.

LindaRacine
09-14-2004, 07:25 PM
Hi Farokie...

Unfortunately, I don't really have enough information to answer your question. It sounds like you're saying the discs within the curve area are OK, but two above the curve and two below the curve are abnormal. That's definitely not normal.

My recommendation would be for you to see a scoliosis specialist.

Regards,
Linda

Connie
09-14-2004, 07:40 PM
Just wanted to say I know exactly what you mean about your back, among many other body parts, being on your mind constantly. I feel the same way...From the time I get up in the morning until the time I go to bed at night my back is constantly on my mind. Its to the point that I hate for anyone to walk behind me because I think they'll notice my deformity. I hate when someone touches my back, such as when they are giving me a hug, because I think they'll feel my deformity and be grossed out by the way my back feels.

I have not been to see a specialist just yet but I really need to very soon. I'm so afraid that the specialist will inform me that I need to have surgery because at this point in my life I cannot afford to be off work for 5-6 weeks. My husband suffered a traumatic brain injury 10/7/01 so he's on disability, which helps but is by no means enough to maintain our household if I should have to be off work. At the same time I know I need to have this looked at before it gets any worse, as it seems that it has progressed over the course of my lifetime and is not looking any better.

Lets all just keep encouraging one another because I think we all could use plenty of that. ;)

Danite
09-14-2004, 09:17 PM
Hi Connie,
Boy did you hit home with me on that one, I feel the same way after fifty years with scoliosis and even a surgery in 1954. My back has degenerated and progressed to a point that they would again like to do surgery but for me, no way, not now. But this is a personal decission and you must make up your own mind. I just wanted to express my sincere support and understanding, that it does not change and most individuals with spinal surgery if your scoliosis is severe enough will always has feelings toward the back and others. It is hard to understand, but I know you get the picture....good luck and God Bless.

Connie
09-14-2004, 11:49 PM
I can totally understand where you're coming from, not wanting to go under the knife again. I hope that you're not suffering from any other serious complications due to your scoliosis. Just want to thank for your kind words and understanding. :)

Danite
09-18-2004, 05:28 PM
Hi Connie,
I must say that I have just discovered that I have a whole bunch of sisters and brothers on this forum that I never knew existed before. If anyone need to talk privately or just need to vent, I will be available.

Connie
09-18-2004, 11:09 PM
Good Evening Danite,

I feel the same way....just knowing that I can speak freely about the thoughts that are constantly on mind 24/7. This is the first time in my entire life that I feel like I have someone who understands what I'm feeling. People that I can relate to and share things with. I am so grateful that I have found this website and glad to know have someone to talk to. :D

luvmyson
11-05-2004, 07:14 AM
My son was screened for scoliosis last year at the age of 15. He was given a prescription for a brace, but he refused to wear it as he was concerned he wouldn't be able to be as physically active as he wanted to be. I'll be making another appt. to be seen and find out if the curvature has increased since then. What specific questions should I ask the orthopedic doctor at the appt? I'm very happy to have found this site.

LindaRacine
11-05-2004, 12:26 PM
Hi....

You might want to consider the Spinecore brace. The brace can be worn under clothing without anyone knowing it's there, and allows the patient to be as active as they want. You can read about it here:

http://www.spinecorporation.com/

I don't think there's anywhere in North Dakota to get the brace, but maybe you can convince your son's doctor to look into it.

Regards,
Linda

she58
08-13-2005, 04:25 PM
I have curve in lower back, and found out when I was 14. It was too late to try to do any correction. About 5 years ago, I had degenative joint disease from my back curve and had to have them braced. Since then I have had lots of muscle aches, and now I have pain in my right hip. Sometimes it feels like a muscle spasm, and hurts when I am sitting. I was tolerating the back soreness ok until this new pain. I was wondering if anyone else has pain around the top of your leg like maybe from the hip, and what you do to help it.

Robin0203
12-22-2005, 08:29 PM
I just wanted to tell everyone that this site has been such a help to me emotionally. I am almost 51 and have been in pain since the 3rd grade. Due to family tragedies, my scoliosis was not treated until I was 16. It was really to late for the brace to help and I suffer constantly now. I felt like I was alone and no one could understand what I have been going through. I have trouble with my breathing and standing, and I don't know how much more I can work. At this time, I am one of the millions without health insurance so doctors are out for the time being. thanks for being so supportive.
Robin

LindaRacine
12-22-2005, 09:49 PM
Hi Robin...

I don't know if it's even a remote possibility for you, but I'd urge you to do anything and everything you can to try to find a job that provides insurance before you can't work at all.

--Linda

Robin0203
01-04-2006, 03:15 PM
hi Linda,
Beleive me, finding a job that offers insurance in my area is almost impossible. I am still trying, although it is hard. I am almost ready to give up sometimes. This past week has been very hard, I really was in pain with my back. It is hard to walk, hard to sit and it is so much fun climbing into bed at night...I was wishing I could sleep propped up against the wall. ;)
Anyway, I won't give up, I am to much the stubborm swede. I live on 8 or more motrin daily, ( I know it is not good for you) but that is the cheapest form of pain relief I can get. Anyway, enough complaining. Thanks and keep your fingers crossed.

crl
09-19-2006, 03:58 PM
>>>She 58 said: I was wondering if anyone else has pain around the top of your leg like maybe from the hip, and what you do to help it.<<<<

Yes, exactly where I have pain: in my lower back and left hip. Pain radiating down my legs . I also have diverticulitis and am being treated for that now. I thought this pain was all part of that until I had X-rays!

My X-rays show osteoporosis and sciolosis. I am very new to this, I have the doctor's report but haven't seen the neurosurgeon yet. I'm scheduled to have a bone scan on 9/22 and see the surgeon on 9/25.

I'm 63 years old! I thought this was something youngsters got?! The report says lumbar scoliosis of left convexity.

For years I've had balance problems, can't walk a straight line even when concentrating on it. When I walk beside a person I keep bumping into them cause they're walking straight and I'm all over the place. Is this related?

I'm looking for any and all advice. Thanks. crl :o

Karen Ocker
09-19-2006, 04:58 PM
My suggestions:

See only a doctor who specializes in adult scoliosis, don't bother with a regular orthopedic or neurosurgeon. Why?---because the scoliosis doctor with look at the WHOLE spine--not some tiny section. He will take into consideration your age, bone density posture and balance.

Other doctors will waste your time, cost money and possible give you the wrong therapy. :eek:

crl
09-19-2006, 09:29 PM
Karen, I don't have a lot of choice re doctors. I live in Costa Rica and must have a doctor who speaks English.

crl
09-19-2006, 09:31 PM
Whoops, forgot something. You mention balance, Karen. I've had balance problems for years. I can't walk a straight line. Is this related? I know so little about this.

Karen Ocker
09-20-2006, 06:59 PM
I do not know about "balance problems" you describe; what I meant was the balance in the spinal curves/posture/weight bearing on the discs---which is abnormal with significant scoliosis.

As far as choices of doctors. Better no treatment than wrong treatment by the only English speaking doctor in the area; he might not be competent to treat scoliosis.

Are there any SRS docs in Costa Rica? Could you travel out of the counrty? Others have had to do that to get the best care. You deserve nothing less.

crl
09-21-2006, 06:40 PM
Karen, the Neurosurgeon I am scheduled to see this coming Monday, 9/25, is a spinal specialist. I didn't mean to infer he was the only doctor who speaks English so I plan to see him. He is affiliated with the Intermountain Spine Institute in Salt Lake City and U.T. Southwestern Medical Center in Dallas as well as CIMA, one of the leading hospitals in Costa Rica.

myree
04-16-2007, 08:11 AM
I am also thankful to have found this site. I am almost always in constant pain. I will be 36 years old on June 1. I have only known that I have scoliosis since I was 35. Just found out that 1 of my sisters also has it and 1 of my neices. I don't know if my doc knows how to treat this, going on 1 year of treatment with no relief. taking neurotin 600 mg 3 times a day, baclofen 2 times a day, and elavil at night to heip me sleep. Riding in a car and driving seem to be the most painful. And I have a long 4 hour trip ahead of me very soon...don't know what to do...any suggestions :(