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berta@aloha.net
07-03-2006, 10:51 PM
Aloha all,

Well, I just joined this a few days ago and feel like finally I have people to talk to! I mean, you look around and there are not many of us, that's for sure. And since I'm 57, and finally facing my scoliosis issue, it's really scary! Now I'm in pain daily, but only in the last 8 months. Before that, like many my age, if you didn't have pain, don't wake a sleeping dog, right!? Plus surgery was out of the question since you'd "for sure become paralized"!!

I was diagnosed with a double 30 something curve in my teens, but it didn't hurt and my parents seemed to think....then it's "OK". Boy, do I wish they were more informed then. Just since my recent pain, and seeing that I was suddenly shorter than my sister, (we were always the same height) and finally connecting my last years open heart surgery with mitral valve repair, I've realized I must have surgery. Now my curves measure about 50 something upper and 60 something lower. I've just had new xrays and an MRI, but have nothing to compare to since I was in denial for so many years. Now my apposite rib cage and hip bone are hitting each other and I've got to act fast! But that's difficult being so isolated here in Hawaii and having Kaiser for my insurance who wants to do as little as possible for us.

Please, any help with surgeons, insurance, information, etc. etc. I would love to hear from you!! It's so lonely in this situation..and scarey!

dawney
07-03-2006, 10:57 PM
I felt the same way when I found this forum 2 months ago. I was also in denial for a long time, I had back pain but it never stopped me from doing anything until about a year ago. My curve is about 70 degrees and I will be scheduling surgery in Sept. I will be going to the surgeon on Wednesday. You will find great information here and a lot of things you probably wouldn't ask your doctor. I come on at least once a day. I feel that I am a part of something. Although I have a great support system I feel better "talking" on the forum because I know that there are people who understand. I am happy that you found this site!
Dawn

Snoopy
07-04-2006, 06:16 AM
Aloha Berta,

I'm sure with living in Hawaii, your surgeon options are limited. Have you considered coming to the mainlands at least for a second opinion? Any chance that you have friends/relative on the mainlands?


Mary Lou

JanM
07-04-2006, 06:39 AM
Hi Berta,

I'm in Hawaii too (Oahu) and am a similar age and have similar curves to yours. I'm going to be having surgery on the mainland in about a year. I decided to go to California to have it done. (I could have also gone to Chicago). But I thought it would be easier to have the shorter flight to CA. If you'd like to send me a private message, I'd be happy to tell you what my process has been. Best of luck to you!!

Jan

berta@aloha.net
07-04-2006, 12:01 PM
Oh yes, I agree. I will have to go to the mainland for this. And for something this important, I will find a way! I have family outside of SF, in Point Reyes that can maybe help me. Being with Kaiser also has it's drawbacks, since I've yet to see a scoliosis surgeon from there on any of the preferred lists. BUT maybe there's hope. LindaRacine just emailed me with a name. Has anyone heard of Josef Gorek, MD. His blurb says he specializes in "complex adult spinal surgery". But how many scoliosis surgeries has he done?!?
I've been told that Kaiser will contract out IF they can't meet your needs, but I don't know if they get to choose or you do. And I think it will take a very very squeaky wheel to get the oil!

Suzy
07-04-2006, 02:29 PM
Hi Berta and welcome,

I would call the Ins. co. and ask if there are any "spine deformaty specialists" they contract with. I would think there would be someone in S.F. or Sacramento. (2 1/2hrs away from S.F.) Or UC Davis. (1 1/2-2 hrs from S.F.) you could go to. These Drs. specialise in scoliosis treatment. If Kaiser doesn't have the specialist you need, ask if you have the ability to choose one yourself. That way you can research the Dr. on your own and choose where to have your surgery. (I live in Sac. had surgery 4 1/2 mos. ago) Keep us posted and best wishes.

LindaRacine
07-04-2006, 02:38 PM
Hi...

I know of one person in Northern California who got Kaiser to send them to UCSF because they felt her case was very complex. (It was after multiple previous spine surgeries.) Others have not had any luck trying to get sent outside.

I think you need to start with your local Kaiser and get a referral to Dr. Gorek, who can tell you how many surgeries he's performed similar to yours. I'm guessing that the number is very high. Since they're not a university hospital, and have a large universe of patients, they spend much more of their time in surgery than do university surgeons (who also do research and see a lot of non-surgical patients) or private surgeons (who have a much more limited universe of patients.)

Regards,
Linda

Shari
07-07-2006, 01:02 AM
Hi Berta,

Welcome to this forum!!! If you have scoliosis, this is the place to be. You will find a wealth of knowledge and support with whatever you need. It has given me great comfort!!!

Good luck in your search!

Shari

CHRIS WBS
07-07-2006, 10:00 AM
From one young chick to another...Welcome! I'm 57 also and it looks like I'm facing first-time surgery as well. Hang in there.

Chris

berta@aloha.net
07-07-2006, 12:44 PM
Boy, I'm so glad to hear from everyone and that I'm not alone! I thought I was the only "young chick" at 57 who had not dealt with such a big issue as our scoliosis. I thought I was doomed!! Really! I'm so happy that surgery IS an option at my age, even though I dread it! (I've already had open heart surgery with mitral valve repair, ouch!) Anything is better then ending up more cripled over than I am and in more pain. Now I have hope.
I have just written a letter to my Kona Kaiser Clinic to "seriously" get the ball rolling. It's pretty isolated here, not being near any big city. Honolulu is the closest and there is not a surgeon that specializes in adult scoliosis there, so I'm hoping they'll send me to SF, get one consult with Dr. Gorek and then another from someone outside of Kaiser.

Wish me luck! berta