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debbei
05-08-2008, 03:03 PM
My name is Debbe, I will be 46 next week. I was diagnosed w/scoliosis at 14yrs old in 1976. I had the Milwalkee brace through highschool, and when I was discharged from my original Dr. in '84 my S curves were 35 and 30. What I never knew and no one told me was that I would progress as I aged. I have had low back pain (not terrible) off and on over the years, and since December have been having thigh ache/tingling/burning, more uncomfortable than pain. The thigh symptoms are what got me to the Dr.

I eventually got to a local NJ orthopedic who tells me that my curves are now 66 and 60. This guy really turned me off; the first appointment he only xrayed the bottom and said no one would touch me, we'd just watch me once per year, and did I want any pain meds? I left hysterical crying that I would end up in a wheel chair like my grandmother did. Then I think he felt guilty over the weekend and called me back, did more X rays and recommended surgery. He couldn't even give me a number of surgeries that he has done. He tells me that I should probably have surgery sooner rather than later because I will get 1 to 1.5 degree worse per year. All I know is this guy isn't touching me.

So then I was referred to Dr. Boachie by a scoliosis study that my kids and I are part of, and I have an appointment on June 5th. I see mention of him all over this board, and I know I'll definitely be in qualified hands. I'm worried about the financial costs since he doesn't take insurance, but I don't want that to be the main factor in my decision of who to go with.

Yesterday I also found out that Dr. Neuwirth whose name I have also seen here, is in my insurance network, so I got an appointment with him next week.

I am excited, nervous, and scared out of my wits. Over the past week, I have gone through periods of crying like a lunatic. Reading your stories has inspired me and made me cry because some of what you are saying is so familiar.

I will definitely be around here much more. Thanks for listening.

Debbe in NJ

Susie*Bee
05-08-2008, 03:46 PM
Hi Debbe! I'm really glad you found the forum too! It's a great place to find support, help, and understanding-- with friendship thrown in too!

It sounds like you have a good head on your shoulders; time to jump ship with that first doctor! And that's wonderful that you have appointments with both Dr. Boachie and Dr. Neuwirth. Keep us posted with what they say. And of course you are having all those emotions! This whole thing can be pretty scary :eek: nerve-racking, and also exciting, as you find out what can be done to help your own situation. You have come to the right place to find people who have also run the whole gamut of emotions too, -- you know that old saying; been there, done that... ;) So we understand what you're going through.

Anyway, it's good to have you here with us and I'm looking forward to hearing more as you venture forth on this next phase of your scoli journey... :)

Sharshe
05-08-2008, 05:27 PM
Welcome Debbie,
I'll be 46 next week too :) You'll find lots of good info here along with friends. A friend of mine(who I met on here(connier185) just saw Dr. Boachie the other week and really liked him, good luck with both your appt.

leahdragonfly
05-08-2008, 07:37 PM
Debbie,

Welcome to the group! I'm glad to hear you have some consults coming up soon with Boachie and Neuwirth. The first ortho you saw sounds like a total jerk. You are not old at 46!

I was wondering if you have seen the book by Michael Neuwirth (this must be the same doc you are going to see?), called The Scoliosis Sourcebook. I got it from my local library, and it is filled with useful information. I actually checked it out once, then a month later got it again to reread some parts.

I know how you feel about never being warned about the scoliosis progressing. I never was told this either, and although my lumbar curve hasn't progressed as severely as yours, it has progressed from about 20 at the end of bracing to 35 degrees now (24 years later).

Also, you mentioned your kids, do they have scoliosis?

Good luck! Keep us posted how your consults go.

Gayle

debbei
05-08-2008, 08:04 PM
Debbie,

Welcome to the group! I'm glad to hear you have some consults coming up soon with Boachie and Neuwirth. The first ortho you saw sounds like a total jerk. You are not old at 46!

I was wondering if you have seen the book by Michael Neuwirth (this must be the same doc you are going to see?), called The Scoliosis Sourcebook. I got it from my local library, and it is filled with useful information. I actually checked it out once, then a month later got it again to reread some parts.

I know how you feel about never being warned about the scoliosis progressing. I never was told this either, and although my lumbar curve hasn't progressed as severely as yours, it has progressed from about 20 at the end of bracing to 35 degrees now (24 years later).

Also, you mentioned your kids, do they have scoliosis?

Good luck! Keep us posted how your consults go.

Gayle

HI Gayle,
I was never told by original Dr. when I was dismissed back in 1984, but maybe back then they just didn't know. What really bothers me now is that my regular family Dr never said anything, and when I specifically asked when I should start seeing an ortho for my back, he said oh not yet. When I went to him for my leg pain a few months ago, he brushed me off like I was a crazy lady, saying to try some stretches. I specifically asked if it could be related to my back and he said no. I guess that should just be a good lesson to me to always trust my gut and not every doctor out there.

I have 2 boys, 15 & 17 yrs old, both who have scoliosis. I was the one who spotted it on both of them, not school or pediatricians. They were not so bad that they even had to be braced. I will remind them as they get older that they should be checked peiodically. I also have a daughter who will be 9 in June, and I have been watching her back like a hawk lately. I'm starting to get that 'I'm not sure--uncomfortable' feeling, so today I made an appointment at the orthopedic Dr. who saw my sons. I feel so guilty for passing along my bad genetics. Do you have kids? If so, do they have scoliosis?

Thanks for the note, and nice to meet you :)

Debbe

Sharshe
05-08-2008, 08:34 PM
Debbe,
Oops, sorry I spelled your name wrong :(

debbei
05-08-2008, 08:36 PM
It really does make me feel better to have found a place where I know people can answer my questions. I think I've probably been driving my real-life friends and family insane.

Debbe

bsprings
05-08-2008, 09:19 PM
Hi Debbie-
My story is similar to yours (same age, wore the brace, etc) I sent you a PM!
Cathie

Ginger W.
05-09-2008, 12:39 AM
I have three children with perfectly straight spines. I understand that 1 in 100 have mild scoliosis and the majority of them will not have problems. Hopefully, that will be the case with your sons. You may want to have their Cobb Angles measured so they can have a baseline for tracking.

Ginger

P.S. I have surgery with Dr. Boachie on May 20th

connier815
05-09-2008, 03:17 AM
Hi Debbe,
Welcome! Just wanted to let you know that I had an appt. with Dr. Boachie last week and liked him very much. Be prepared for a wait in his office, but it's definitely worth it. He personally spent alot of time with us, did not make us feel rushed and answered every question we could come up with. He has a real calming effect, too.
Good luck with your appts. Keep us posted.
Connie

debbei
05-09-2008, 05:25 AM
Hi Debbe,
Welcome! Just wanted to let you know that I had an appt. with Dr. Boachie last week and liked him very much. Be prepared for a wait in his office, but it's definitely worth it. He personally spent alot of time with us, did not make us feel rushed and answered every question we could come up with. He has a real calming effect, too.
Good luck with your appts. Keep us posted.
Connie


Hi Connie,

Yes I read your post last week but wasn't able to repond (wasn't yet activated.) The day I read it, I was very upset, and I have to tell you that your post comforted me. It really did. My hubby and I want to make the best decision we can, and hope that it is easy for us to make a decision. Right now we have no clue.

Thanks for your note, and I will keep you guys posted.

Debbe

debbei
05-09-2008, 05:30 AM
I have three children with perfectly straight spines. I understand that 1 in 100 have mild scoliosis and the majority of them will not have problems. Hopefully, that will be the case with your sons. You may want to have their Cobb Angles measured so they can have a baseline for tracking.

Ginger

P.S. I have surgery with Dr. Boachie on May 20th


Ginger, good suck with your upcoming surgery. You will definitely be in my thoughts. I have read some of your notes over the last week when I wasn't able to post yet, and leaned lots of good info. My boys were followed by a ped. orthopedic in our area who did measurements on their curves. Is that what the Cobb Angle is? I was surprised that he dismissed #1 son at 16, and #2 at 15, saying they wouldn't get much worse because their growth was almost done.

But back to you, good luck, I will be thinking of you and anxious to hear how it goes. :)

Debbe