Newbie

[girlwithnolife]

Hi all, I am new to this site but not scoliosis. Actually I am a 52 yr old female and never knew I had it till I was 34 and in labor. The anethesiologist asked me did I know I had curvature of the spine and I said no. Never worried about it as it never caused me any trouble and I did hair for over 20 years. Now, it's beginning to bother me. I had shoulder pain where I couldn't lift my arm above my head for 5 months doctor just said o it's bursitis. Also, whenever I walk for even a small amount of time, like grocery shopping, it really hurts. Also get burning pain, tingling if I sit or lay the wrong way, aches and pains all over, mainly on my left side. I finally went to an ortho and he took X rays and said I have severe scoliosis. I saw it pretty clearly. He gave me some flector patches which did help after the grocery store trip but from what I gather nothing really can be done but pain relief. I mean, I'm not going to be able to walk anymore without pain? I guess I'm just trying to figure out if there are any type of exercises or massage or anything that might help. Any info would be appreciated. Also, I am trying to find out the degree of curve as he never told me. It looks like it's a higher up curve. I also get weak legs feeling and lose my balance sometimes. Something that also feels like nerve pain. I live about 25 min from Wash D.C. and 1 hour away from Johns Hopkins hospital. Do you think I should go to 1 of these places. Ortho made it sound like there really is nothing to be done. except surgery, and things for pain. Sounds like a very extensive serious surgery and I am not that active anymore but would like to be. It also sounds like the surgery doesn't always help with pain and could make it worse and I'd rather not take a chance of getting worse yet. Any info would be greatly appreciated. Thank you, Stephanie

[JenniferG]

Hi Steph,

I am sure there is more that can be done for you Steph. People here have tried lots of treatments, some that work well for years, including physiotherapy, but often, in the end, need surgery. For this, you need to see a scoliosis surgeon, there is a list on this forum somewhere (SRS surgeons.) It would be my advice to see one to be properly evaluated and to get his advice about how to proceed from here.

I ignored my scoliosis into my 50s but it reached the point the pain was impacting my life so I saw a scoliosis surgeon who recommended surgery. I am fortunate enough to now be completely pain-free and can do anything I want.

Read as much as you can on this forum and ask as many questions as you can think of. The demystification of the process will give you the power to make your own decisions. People here can often help with surgeon recommendations and loads of other useful advice. Welcome to this very useful forum!

[girlwithnolife]

Thank you so much for your reply. I am just clueless to what, if anything, I should do. Just going to the grocery store, by the time I come back, I'm in pain. I used the flector patch that the ortho doc gave me and it did help but just wondering if this is how it's going to be the rest of my life. I guess so I really didn't want surgery but ortho doc didn't really give me any suggestions, except for pain relief. Steph

[kennedy]

hi Steph, i'm think you need to get in to a really good scoliosis speicalist at john hopkins

[titaniumed]

Stephanie

Welcome to the forum.

This will help. Its Linda’s site.
http://www.scoliosislinks.com/Specialists.htm

If your ortho is saying “severe scoliosis”, it would be wise to visit a “scoliosis surgeon”... It doesn’t mean that you have to have surgery with him. Its just so you know exactly what is going on with your spine for peace of mind.

Every scoliosis patient should have an evaluation by a scoliosis surgeon. Not your regular Orthopedic, these Doctors only do scoliosis surgeries.

This is a valuable site for the scoliosis patient. There are plenty of threads and posts from all of us here, and plenty that will talk to you if you wish. Just PM through the system.

Good luck
Ed

[ctown]

Hi steph,

there are definitely PT exercises that can help with the pain, but which one's work probably varies from patient to patient. I have a 50deg thoracolumbar C curve and was given a very simple breathing exercise by a movement specialist that has helped to prevent pain when done regularly, i.e., everyday. She also gave me one that I do when pain does come up, like in the morning when I wake up sometimes or after standing for a while. Here they are if you are interested.

Breathing exercise:

Lay on your back and put a folded blanket (about 4inches high) under your lumbar spine, so that your tail bone is just hanging off the edge of the blanket and touching the ground. The blanket basically helps to support the arch in your back. Bend your legs at the knees so that your feet are just about under your knees. Now, when you breath inward, let your stomach expand, and when you breath out let it fall. Try not to breath with your chest, but with your stomach. Do this for 15-20min every morning or night. I noticed a difference after a couple weeks of doing this every day.

Stretching exercise:

Lay on your side in a very loose fetal position. Lift your arm and just let it move around wherever it wants to go. You'll feel when it pulls on those back muscles that are sore (I find holding it up and back like a chicken wing really stretches the sore areas). You can do the same thing with the leg, and while laying on the other side of the body.

If they work for you please let me know! I was surprised that they helped me.

The best thing you can do, in general, is to strengthen your core/your abs. Pilates are really good, but a physical therapist can help design a simple routine for you that you can do everyday, provided they are good and care about backs (I've been to some who just don't care much about backs and it wasn't very helpful).

[jrnyc]

hi Steph
welcome to the forum...there are many kind people here, with stories and knowledge to share, and support to offer....
i agree with those who said to find a scoli specialist...not all orthos know scoli, and lots of surgeons don't specialize in it...so it is important to have one who does...
i also would recommend finding a good pain management doctor, one who could tell you what might be some alternative treatments for you...

best of luck...
jess

[girlwithnolife]

Thanks so much for all your replies. I am still debating where I should go or if I should go to a doc. I am going to try your exercises as suggested and let you know I am 45 min away from Johns Hopkins and 25 min away from DC. If any 1 knows of a good scoli doc near here plz let me know. I was just so surprised that the ortho said sever scoli , gave me some flector patches and when I asked was this it he said well, there are epidural injections. The thing is that I have pain in more than just my back. My, mostly left side, has problems at the hip knee shoulder neck and other places to name a few. What, am I supposed to put patches everywhere. LOL Steph

[SusanS]

Hi Stephanie,

i hope you take the advice to go see a scoliosis specialist, but you also need to have your nerve symptoms looked at. It wasn't until I went to a neurologist then a neurosurgeon that I learned of the spinal cord damage that was occurring as a result mainly of my scoliosis. If you have cord compression it important to address it. Leg weakness and falling are red flags as well as the nerve pain.

Good luck!

Susan

[jrnyc]

sent you a private message...

jess

[girlwithnolife]

Thank you all for your replies. I am going to the University of Md Spine Center next Fri. The doctor's name is Gelb. Will let everyone know what he says