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dorigirl
04-28-2006, 07:53 AM
Hello everyone,
I am a 35 year old mother of two (3 & 6). As a child I was diagnosed with a double curve - right thoracic/left lumbar at 46 degrees. Surgery was suggested at that time, but my mother did not want to put me through the operation and recovery time which in 1983 was 1 year! I did wear a brace for the better part of 4 years. I have to say my pain has always been pretty manageable over the years even through two pregnancies. Although, since the birth of my first child my pain has been getting worse and worse.

I just came from my second appointment with the orthopedic surgeon and my curve is now 54 degrees with osteodegeneration in my lumbar spine. I am worried that with age things will contine to worsen and I don't want to be 50 and face a surgery of this magnitude. Does anyone have thoughts on this? Does it typically always get worse and should I expect to be a hunched back little old lady if I don't get it corrected?

I live in the central part of Pennsylvania and need doctor references also. Does anyone know of a great doctor in Hershey, Pittsburgh or even the Baltimore area (only 3 hours away). So happy to have found this site! Thanks to you all!

Snoopy
04-28-2006, 09:58 AM
Hi dorigirl,

Welcome! Just wanted to let you know my daughter and I run a Scoliosis Support Group (Central PA Chapter) which meets at the Hershey Medical Center. We are in the process of scheduling our May meeting. If you would like more information, feel free to contact me at Spinesupport05@aol.com.

Mary Lou

Shari
05-02-2006, 01:15 AM
Hi dorigirl,

I had my surgery at 45, I do believe the younger you are the faster you heal. But you also have to consider the age of your children and the support group you have around you. The first few months are the toughest and you would need help taking care of your 3 year old. If I had known that they could have fixed me 10 years ago I would have done it in a heartbeat.

Just don't jump into to anything without alot of time spent finding the right Doctor. This forum is one way to find the guidance to send you in the right direction. It's a difficult decision to make, but you will find that any fears, questions or thoughts you may have, can be addressed right here.

Shari

lelc2002@yahoo
05-02-2006, 08:50 AM
Hi dorigirl,
I'm 46 with a 60 Lumbar curve. As a teenager I wore the milwaukee brace for 2 yrs & my parents opted not to have the operation(curves around 40 then). If you don't have much pain or any major problems, I would just have it checked yearly. I can say that after my second child was born, friends started to notice that I was shorter & the curve/hump much more pronounced. Personally, I would wait until the kids are a bit older & in school full time... I'll have surgery in August & one of my main concerns is having the kids taken care of at least for the first month or so. Then by September, they will be in school which helps a great deal! You are young so who knows what the new procedures will be in several years. Hopefully a quicker recovery!!!
Lynne
http://lynnebackattack.blogspot.com :) :) :)

dorigirl
05-02-2006, 09:01 AM
Thank so much for all the advice. I am lucky to have the best friend in the world, my identical twin sister! (who does not have scoliosis). If I decide to have the surgery I am condsidering moving in with her to help me with the kids during the recovery.

Snoopy, thanks for the invitation to the support group. Unfortunately, I am living in Virginia right now. My husband is in the Navy, he will be going to California for several months and I am going back to PA. Once I am settled (July/August) I can attend.

Still looking for Dr. "Right"! Does anyone know anything about Dr. Fred Hess from Geisinger in Danville, PA?

Dorigirl

Lisa Poole
05-17-2006, 09:33 PM
Hi,
I was 23 years old when my Dr first recommended me having the surgery. At that time my curve was about 50 degrees. I had a 3 month old baby and a four year old at home and opted to wait as long as I could to have the surgery, hoping until they were a little older. I began to be in pain most of the time and continued to see the Scoliosis Specialist on a yearly basis. Right after my 28th birthday he informed me that I needed to go ahead and have the surgery because it had progressed to a 77 degree curve in just 5 years. My daughter's were about to turn 5 and 9. It was October of 2004 and I scheduled my surgery for Jan 2005. They had given me a 80% complication rate due to the fact that I also have Osteogenisis-Imperfecta or as most be know it as "chalk bones". They had told me that there was the 80% chance I would have to wear a body cast after surgery until the bone had time to harden due to my weak bones. I was horrified of this with having 2 young kids. It was harder on me and my husband,whom never left my side, than it was on the girls. I spent 13 days in a hospital that is about an hour away from our house and families, my girls had to spend all 13 days with my parents. They were treated like queens! They transitioned very good. They came to see me in the hospital everyday so they knew that Mama was okay. I think that was the best thing for them, if they couldn't have visited me everyday I think they would have had a harder time. Once I came home my husband sat them down and explained to them that I could not be doing for them as they were used to and we had talked to them both about all of it alot before hand so they were very aware of what to expect. It all went very well. I don't think I would have went through it when they were any younger though. I waited as long as I could so that they could understand as much as possible what was going to happen and the changes that were going to take place. It was an awsome feeling for them to try there hardest to take care of Me for a change. I will never forget, every post-op appointment I went to I would come home and my youngest daughter would ask first thing "can you pick me up now?". So when the Dr. released me with no restrictions after 7 months I came home and told her to come to me and I picked her up and I wouldn't give anything for the look in her eyes. The surgery will not only affect you its going to affect your whole family. They will have to adapt to just as many changes as you will. So remember it is going to be hard at first because you will get frustrated with everyone trying to treat you like you are help less but, in the end I would do it all over again. Always try to be just as patient with them as they are with you because it will be as if your whole life is turned up side down that first 6 weeks when you have lots of restrictions. I personally just from experience would wait another year at least, if you can according to the Dr. Just explain your concerns with him and he will let you know the risk involved in waiting and you can way the odds. That's what I did and my Dr was very understanding and when he knew that it was getting to risky to wait he let me know. I am know almost 1 year and 6 months (June 6th) post-op and I have no regrets! I have more self confidence now and I don't have any more pain that I lived with for so long. Just have faith in the Lord and pray about it and he will take care of you and those kids! I am living proof of that! I ended up with no complications and the Dr's are astonished at how fast I heeled and recoverd so well, I told them it was in the Lords hands and he was the one who heeled me. I hope everything works out as well for you as it did for me. I will keep you in my prayers.....
Lisa

briarrose
05-19-2006, 02:03 PM
Hi Dori

I saw Dr. Weiner at Hershey Medical Center 3 years ago. My curve was 33* at the time so he didn't want to take any action. He said he prefers to do a surgery when the curve is over 50*.

http://webapp.hmc.psu.edu/physdir/provider.cfm?id=bweiner&btnGo=Go&action=phys&method=select

I've also seen Dr. Porter at the Lancaster Orthopedic group. He doesn't do surgery unless the curve is above 45*. He's very nice.

If you can get to Philadelphia, I'd recommend seeing Dr. Albert (NOT Dr. Broyer!) at the Rothman Institute. He did surgery for my aunt and she thinks he's great. I'm currently seeing Dr. Fras at the University of Pennsylvania. He seems by far the best of the 3 doctors I've seen. He wants to do surgery with curves that are progressing in adults.

Good luck!

dorigirl
05-20-2006, 10:03 AM
Thank you so much for the great advice and the Dr. recommendations. I am still looking for the right doctor and have expanded my search to John's Hopkins (3 hours away). I think that waiting until my babies are a little bigger feels like the right thing. By the time I am settled in PA and do consults and schedule surgery they will be 4 and 7 maybe older. This would be better for them and my sister who will care for them.

I am scared about a surgery of this magnitude and scared of how I will look and my degree of flexibility afterward. So many things to think about! Then again, fear of the unknown is the worst fear of all...

Thanks again, take care
Dori

Lisa Poole
05-20-2006, 01:10 PM
I was also afraid of never being able to touch my toes again and so on. But actually, It is tough for me to touch my feet or pick something off the floor while sitting down because my fusion goes to my pelvis and the Dr's have said that it is because my pelvis doesn't roll. I can bend over very well while standing but I have adapted to bending at my knees to reach something off the floor. It always sounds worse than it really ends up being. I run an In home daycare 1 year after my surgery so its not that bad!
Best of Luck,
Lisa

lostfan
05-20-2006, 04:41 PM
Dorigirl:

I live in central PA and have been to Geisinger in Danville. I haven't seen Dr. Hess but I have heard he is pretty good. I have an appt on Tues at Geisinger w/a Dr. Andreychik. I saw this Andreychik a few years ago when my curve was about 57 and he suggested surgery but I wasn't ready. I'm still not planning on surgery unless maybe something drastic has changed since 2000.

I've also seen a Dr. Daniel Gelb at Hershey. He is excellent. My family doctor knew him personally and referred me there a few years ago. I still chose not to have surgery but he went over things w/me and spent a lot of time with me answering questions. I don't know if he would still be there or not.

Where I live in PA there are not many choices for orthos. Geisinger is probably the best around here - its about 1.5 hours from where I live but as far as scoli specialists and such that other people mention, I've never found anyone like that.