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scooter950
06-10-2006, 10:42 PM
Hello all- I am so glad/ relieved/ scared/ but happy that I found this group!
I have ravenously read so many posts... eager to learn about your experiences, your recoveries, your coping skills. Let me say: you all are GREAT! I usually wouldn't post, I prefer to lurk... but I trust you all already.

I am 48 yo woman, Jamie, dx'd with scoli at late teens/ early adulthood. No, I was not screened in school. Every doctor I went to told me I was too old for surgery, but I do remember being strongly advised- that once I am past menopause, when my curve started to change- that was the time when I should consider surgery: not for correction, but for stabilization.

That time has come; I've had a surgical menopause due to endometriosis five + years ago, and even though I insisted on taking estrogen (love it!).. it seems I am shrinking. Weird, though, my curves are changing but NOT worsening- from 60+ thoracic I am now 54 degrees, and my 30 some sacral curve is now 45 degrees. Which - I beleive- is the reason I now have such horrible hip pain. I fear osteo. and I fear the side effects of Boniva/ fosamax ( the bone pain... don't we have enough bone pain already??)


I started looking into scoli on line, and found this site- praise God! My biggest fear is paralysis. Sexual dysfunction. Urinary and /or bowel incontinence. My worst fear is to end up paralyzed from the waist down after having a surgical correction. I haven't seen this discussed here- maybe I haven't read enough. I haven't used the search engine- I'm not really savvy about posting - so forgive me if I break any e-etiquette rules.

that's all for now- I feel I could write a book here, it is so incredible to have other people to "talk" to about this! no one at work understands why I don't go out after work- I'm really not anti-social, I'm in pain. At times I want to lie on the floor in my office ( I am so lucky to have a door!) - just because sitting causes such pain. and lately walking or standing causes the hip pain. I'm taking anti-depressants already. ANd I love Motrin/ /NSAIDS - breakfast of champions for me. Ok for real I will stop. thank you all for sharing- and I will check back periodically- I usually get on the computer on the weekends.
Can't do it at work, really- thanks again for all the SUPPORT I've already found here! Jamie

no surgery- no bracing- just crooked

LindaRacine
06-11-2006, 12:42 AM
Hi Jamie...

I have links to abstracts from scoliosis surgery outcome studies here:

http://www.scoliosislinks.com/SurgeryResearch.htm

What you really need to know is your own surgeon's complication rates. All of the complications you mentioned are fairly rare, but they do happen. Ask your surgeon about his/her specific rates. If you feel that it makes the surgeon uncomfortable at all, you may want to get additional opinions.

Regards,
Linda

Shari
06-11-2006, 01:52 AM
Hi Jamie,

Welcome to this forum!!! I still remember the excitement I felt when I happened upon it. I spent hours and hours reading when I wasn't working. I just couldn't get enough info, it was almost like an addiction. Just knowing there are so many other people going through alot of the same expericences, was so comforting.

When you mentioned lying on the floor of your office, it brought back memories.

Shari

mattie
06-11-2006, 05:58 PM
scooter950, I had hip pain also. My pain was getting so bad I hated to go anywhere because I was always in pain. Don't get me wrong there is pain after surgery but it sure has releived my hip pain.
Good Luck...... Mattie :o

Suzy
06-13-2006, 12:59 AM
Hi Jamie,

Welcome to the land of scoliosis info! I want to set your mind at ease about the paralysis issue. When I had my surgery (2/22/06) I was hooked up to so many electrodes (I lost count) attached to my lower 1/2 so that my surgeon could be told as he corrected my rotation and curve if my spinal cord was being stressed or not. He told me the Dr. who monitored these electrodes (that were hooked up to a computer) would be able to tell immediately if my spinal cord was complaining or not. If so they would stop and try a different approach or if my correction was good enough at that point stop. I found no % as to any paralysis during this surgery during my months of surgery and now see why. It was amazing to talk to the Dr. as he placed these sensors all over me and explained how they work. Wires ran from each sensor down each leg where he rolled the ends into a loop and taped them to my ankles till I went in to surgery where they then hooked it all to the computer.

As to the sexual disfunction see the thread "intimacy how soon" Also, not to worry.

Now for the incontinence issue....... I haven't seen any bladder problems mentioned anywhere here, but bowel!! QUITE the opposite! You will be lucky to be able to go at first after surgery!

I hope this helps to ease your mind. Keep in mind as you do your research that the technlolgy has changed A LOT in the last 3-4 years (per my DR.) and some statistics are old. Best wishes.

scooter950
06-17-2006, 07:47 PM
Hello LindaRacine, Shari, Mattie, and Suzy- thank you for your kind comments, and sharing your thoughts about surgery complications. I am scared but encouraged that perhaps it IS better that I've waited to have correction surgery. But I don't want to wait much longer. I am thinking of going to Dr sShelokov (sp?) in Plano- if I can convince my insurance company to authorize him. I've gone to a local ortho surgeon who didn't even spend five minutes with me- and he didn't even make eye contact. Just came in, looked at my films, then told me to bend over -looked at my back briefly, and said he wouldn't operate on me. So I'm hopeful that if I ask for a second opinion- then I can request a second opinion from Dr shelokov.

anyway- I'm so happy to have found this forum! I will have to start reading everyone's stories, and I will try to get to know each of you better. Thank you again for your welcome~ Jamie

Linda G
06-18-2006, 02:34 PM
I live in the Dallas/Ft Worth area and saw a surgeon about 2 weeks ago. I am now scheduled with Dr. Shelokove (really his nurse Eric) on Thurs. I have heard so many wonderful things about him and his web site is very impressive. I am sure he will be the one I will use. I am 63 years old and was diag at 16 however no one did anything to help me. I have been thru all the chiropractors, rehab and injections. I am now on morphine patches and Norcor twice a day. I believe my curve is about 37% but I have a vertebrae where the disc is gone and bone spurs have grown around it and it is pinching off the nerves. Thankfully it has not yet effective any of my organs. I do have pretty sever pain in my hip and low back. I will post my results from my visit on Thurs. I know that Marcia in the Houston area has also seen Dr. Shelokov and was impressed with him. Hopefully in your case you will not need surgery. Take care, Linda