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Lindalee
07-03-2006, 03:51 PM
Hi to All,
I am new to this site in that it is the first posting for me, but I have looked at it on and off for a couple of months. I have finally gotten up the courage to jump in, mainly because I am desperately in need of guidance and advice and you all seem to know so much and I know so little. Plus you are so willing to share--I have been reading for hours. And you seem genuinely concerned for each other. I am a 57 yr. old wife and mom of grown daughters who works more than full-time. I went to my orthopedist a few months ago due to much more persistent lower back pain (as in all of the time). He told me that the curvature in my spine had progressed 14 degrees in the past 4 years since my last visit (it is 50 plus degrees now) and that I need surgery within the next 6 months. I was very upset (to put it mildly) as this discussion had never even been a topic of conversation --I was so stupid that I didn't even know it was an option in my future, even though my body is changing shape. I had never been told that this could happen to me. Anyway I later called the nurse, who gave me the name of an adult surgery patient I could talk with--but when I asked the nurse how often the doctor actually performed the surgery on adult patients, she replied only 2-3 times, that he mostly operates on children. I have put off thinking about this as long as I can.
I definitely need to see someone else for another opinion--maybe more than one more, but I do not have a clue how to find a qualified adult scoliosis doctor. I do not think there is one in Winston-Salem, but I am willing to go anywhere to get the best doctor. But how far is too far? I was reading from all of you how difficult travel after surgery can be, so is that an insurmountable problem? If no doctor where you live, how did you chose your doctor? and will doctors schedule an appt. without a referral (although I can certainly get that)? I checked the NSF directory, but they just list the Orthopedic Spine Specialists (my doctor was on the list, so I have no confidence in the list), so I really need your help finding out how you went about choosing a doctor and if you felt you made the right choice. Thank you so much for helping me--I know there are a lot of people out there just like me--it's a lonely and scary place to be, but if all of you can do it, I can too.

mattie
07-03-2006, 04:34 PM
I started out with my GP.I was having a lot of right hip pain and new from looking at myself that I was getting worse. My Gp first off sent me to a chriopractor per my request. I thought maybe they could help relieve my pain. After 3 months of that i was no better but no worse. I was taking a lot of pain pills and it was interferring with my daily living. My GP sent me to a orthopaedist close to my home. He took some x-rays and told me I needed to see a spine specialist that deal with scoliosis. He said my curvatures( I have 2) were over 50 degrees. I believe it was 56 degrees. He got me an appointment with a spine specialist. I had to have a referral. Some Dr. don't require it but for insurance purposes I had to anyway. The specialist he sent me to was 50 plus miles away from my home. He looked at my x-rays and said I needed to have surgery or I would continue to get worse because it was progressing pretty fast. He was very nice had a good bed side manner but was right up front with me and my husband. He gave me time to think it over and I called him back about 2 weeks later and had decided to have the surgery. He had already explained to us all about the surgery and what to expect. After about 3 months of test and appointments with other Drs. I had my surgery. He done mine 2 days apart. The first one he went through the front and made 2 small incisions to remove the discs. Then 2 days later he went through my back and put in 2 rods and 16 screws. I was in ICU for 5 days then went to a room. I went home 8 days after surgery. I had to wear a brace for 6 months. I am now 8 months post op and am doing pretty good.
It was the hardest surgery I had ever been through. But I made it and you can too. I hope I answered some of your questions. If you need help with a question or 2 this is the place to go the people on here are great. It seems like no matter what the question some one on here will have a answer or at least a suggestion.
Mattie

lelc2002@yahoo
07-03-2006, 05:03 PM
Hi Lindalee,
there are many here about your age & in similar circumstances.. Perhaps Gail will get on because I think she is from NC?? anyhow someone will give you some names... you certainly want a surgeon who works on adults & who operates a lot. My doctor does quite a number of operations here & abroad...
I was the same last year & kind of ignored my back issues but by Jan of this year I had a surgery date! I'm scared to death but it's the best thg I can do for myself & family...I have great trust in my surgeon & great faith above to pull me thru this.........Ly 60/60 curves surg aug 1st/dr. boachie, NYC
age 46 http://lynnebackattack.blogspot.com

LindaRacine
07-03-2006, 07:24 PM
Hi...

I've heard from a few people who had surgery with Dr. Lloyd Hey:

http://www.lloydhey.com/about.html

Regards,
Linda

berta@aloha.net
07-03-2006, 10:20 PM
Hi Linda and all,

I felt like I was reading my own post. I too am just now finding out that I must do something about my double curve, of about 50 something upper and 60 something lower. (just got my xray and MRI) I'm also 57 and was almost pain free until 8 months ago and now my pain is daily and miserable! I never thought surgery was an option and being from this generation, we didn't know what it would bring later in life. I've already had the related health problems and ended up with open heart surgery last year, not knowing at that time that is was related to my scoliosis! I had mitral valve repair, and then 3 months later, ended up with a twisted colon that had to be partially cut out. That's probably related too, but haven't had it confirmed yet, even though it makes sense. Now, doing things a bit backwards, I'm now looking for "the best" surgeon and being in Hawaii makes it very difficult. I'm sure Calif. will be the best place. I have Kaiser which is also a problem as they are very slow and do as little as possible. No real good advice so far from them. So I do need advice on surgeons please and anyone else with any support, I appreciate so much!! I also feel I need to act on this asap because my pain is worse, I've shrunk over 2 inches in the last 4 years and my rib cage and hip bone are hitting each other!! So Scary. Thanks for hearing me and looking forward to responses!

LindaRacine
07-04-2006, 12:58 AM
I've already had the related health problems and ended up with open heart surgery last year, not knowing at that time that is was related to my scoliosis!
It probably wasn't related. Idiopathic scoliosis curves should not have any impact on one's heart until they're 100+ degrees. :-)

Good luck finding someone at Kaiser in Hawaii! Yikes! Most of the adults with Kaiser in Northern California go to Josef Gorek:

http://www.permanente.net/homepage/kaiser/pages/c5606-top.html

If you'd like, I can put you in touch with a 70-ish friend who had her surgery about a year ago. She's had an excellent outcome. Send me a PM if you'd like her contact info.

Regards,
Linda

Suzy
07-04-2006, 02:47 PM
Hi Lindalee,

Try the search using "orthopedic spine deformaty specialist" these Drs. specialise in scoliosis according to my findings when I was looking for a Dr. I worked the phone book (I have a PPO and can self refer.) asking tons of questions and talking to the Drs. assts and office mgrs. about the Drs. qualifications and how many scoliosis surgerys they had done. We are an elite club us scoliosis patients, so it may take some searching to find one. Best wishes.

Shari
07-07-2006, 01:35 AM
Hi Lindalee,

I still remember the night I found this forum. I read for hours and hours, for weeks and weeks!!! My husband would actually get a little pissed off at me. I just couldn't stop. He still says,"haven't you got enough of that yet", and I would say NO.

I think it's a very frightening situation that you are thinking about, and it's nice to know that there are people out there that have gone through it. It will be rare that you get bad advice here. We all have our different experiences, but if I were you, I would consider what Linda R. suggests.

Shari

sweetness514
07-09-2006, 02:08 PM
When I talk about this forum, my mom says to not read too much b/c of the bad. But I tell her that I see all that can happen, wich is what I need to face it and accept it(wich is how I deal with things) and that I have gotten a LOT of help from reading posts and I understand a little more what I went through and what needs to be done at times.

Wish I had known about it when I had my first surgery for sure.

JoAnn5
07-10-2006, 01:48 PM
Welcome, LindaLee.... This forum is such a life-saver for me.. I think i would have gone crazy by now if i had not found it. Here i can see that something that seems huge and scary to me is just routine and nothing to be afraid of. And i can also find out that something i figured was normal for us 'scoliotics' is not really normal and needs further attention from my dr.. I agree that the more informed we are, the better able we are to handle the task at hand. I hope it will help you as much as it has me.

I had tried several different chiropractors, massage therapists, etc. and finally my GP sent me to a local orthopedic dr. When he saw my xrays, he predicted the necessity of surgery and referred me to a spine specialist in Nashville, Dr. David McCord, who did further tests and also suggested surgery. I was very happy with him and his office staff. I would choose someone close if possible, but if not possible, i think it's more important to have a surgeon in whom you can have faith.