Re: Adult CHARGE - Scoliosis

[Guest guest]

I am getting repeated joint and bone injuries. I am going to tell my doctor

that I am trying to be active and live healthier but its hard to excersize

if I keep reinjuring myself. I am going to tell her when I call her tomorrow

that I want to find a solution or for her to find me someone who can.

I just hurt a bone in my rib doing a yoga stretch and that injury was from

when I was maby 11 ish but man does it hurt atm!

Chantelle

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

[Guest guest]

Sorry to hear about your rib Chantelle - hope it's feeling better soon.

>

> I am getting repeated joint and bone injuries. I am going to tell my

> doctor

> that I am trying to be active and live healthier but its hard to excersize

> if I keep reinjuring myself. I am going to tell her when I call her

> tomorrow

> that I want to find a solution or for her to find me someone who can.

>

> I just hurt a bone in my rib doing a yoga stretch and that injury was from

> when I was maby 11 ish but man does it hurt atm!

>

> Chantelle

> --

> I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

>

>

[Guest guest]

I really feel along with you. My shoulder hurts like the dickens. I'm in

rehab for my heart and am seen 3 times each week, but the only opinion

I've received is that I've pulled a muscle - probably while in a panic when

leaned backward over our staircase which prompted me to grab her!

Just keep pushing a dr. to take you seriously - and please remind me to

do the same! Martha

[Guest guest]

Bonnie,

Thanks for your response and info. has a 52 degree curve of the

spine and they are, in simple terms, looking into straigtening the

vertebrae, going in through his back putting a rod along his spine and

anchoring it to his hips. It will be a very intense surgery with a 6 -

10 day hospital stay and approx 3 month recovery period. Doc says it

will help in the long run so that the curve does not get worse and

impact his internal organs.

How is Patty doing overall? is doing great, driving, working

and going to school. We've come a very long way from the original dire

predictions when he was a baby!

--

--- Turk22082@... wrote:

>

> ,

>

> Welcome to the list.  I have a daughter, Patty who is 22 and has

> CHARGE.  What kind of surgery are you talking about?  Patty had her

> shoulder blade removed and repositioned.  They also defused some

> bones that weren't supposed to be like that.  Hers was a pretty

> intense surgery with a huge scar on her back.  But !!! it lessened

> her sprengles, gave her better range of motion, helped her lung compa

> and it also helped her kyphosis-?  That's scoliosis instead of being

> up and down the spine goes kind of sideways.  There isn't a name to

> her surgery and " they made it up " as they went along. 

>

>

>

> Even though the surgery was intense I would do it again without

> hesitation.  It helped her tons.  Plus it wasn't as bad as we thought

> it would be.  It all went without a hitch. She was in the hospital

> only about 3 or 4 days. 

>

>

> I wish you all the best and look forward to read more about .

>

> Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

>

>

> Adult CHARGE - Scoliosis

>

>

>

>

>

>

>

> I have been following this list-serve for only a few days, however,

> my

> son is 25 and was diagnosed with CHARGE in 1991. Reading your emails

> has opened up a flood-gate of memories, both good and trying.

>

> has not had a surgery in over 5 years, something of a record!

>

> Now it appears we are facing a major decision ... back surgery for

> scoliosis.

>

> My question to the group is ... has anyone faced this decision yet or

> has anyone gone through it?

>

> Thank you for your input,

>

> __________________________________________________________

> Need Mail bonding?

> Go to the Yahoo! Mail Q&A for great tips from Yahoo! Answers users.

> http://answers.yahoo.com/dir/?link=list&sid=396546091

>

>

>

>

>

________________________________________________________________________

> AOL now offers free email to everyone. Find out more about what's

> free from AOL at AOL.com.

>

>

>

[Guest guest]

I think I missed the beginning of the scoliosis discussion. Who is having the

surgery and when? I'm very interested in this topic. My 9 year old daughter has

a curvature of only 22 degrees now, but Ortho wants to operate at 25 degrees. He

says it's in an unusual place, very low, and is starting to place stress on her

hips and knees. Apparently bracing is not an option for her. Sounds like a scary

surgery, relatively speaking of course. Please keep us updated with your

results.

Thanks,

Jeanie Colp

mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 12