it's been a while

[Guest guest]

Hello everyone!

Our little guy who wore the local New Albany, IN helmet is doing

great. His curly blonde hair masks any kind of flatness, and we got

Anthem to pay about $500 of the $1100. I'll take it after 7 months of

bugging them!

I'm not sure if another local lady has been posting or not, but I

know of a mom who has put her son in a STARband at Hangar P & O here

in Louisville, and it's been going great. If anyone has any questions

about that, I'm sure I can track her down for you to talk to. I only

wish I had known about that option at our time of looking into

helmets. Anyway, hope everyone's heads are rounding nicely! What a

beautiful little baby on the front page!

Noyes

Louisville, KY

[Guest guest]

So you ended up using the helmet and the same orthotist and

everything worked out?

Natasha

> Hello everyone!

>

> Our little guy who wore the local New Albany, IN helmet is doing

> great. His curly blonde hair masks any kind of flatness, and we got

> Anthem to pay about $500 of the $1100. I'll take it after 7 months

of

> bugging them!

>

> I'm not sure if another local lady has been posting or not, but I

> know of a mom who has put her son in a STARband at Hangar P & O

here

> in Louisville, and it's been going great. If anyone has any

questions

> about that, I'm sure I can track her down for you to talk to. I

only

> wish I had known about that option at our time of looking into

> helmets. Anyway, hope everyone's heads are rounding nicely! What a

> beautiful little baby on the front page!

>

> Noyes

> Louisville, KY

[Guest guest]

Hi C.

I can surely relate. I've had the same symptoms as you years after

revision. Yes, I agree it is frustrating that after being through so

very much, I believe it really is the " little " things that get us in

the end. After having SI joint problems for a while, I had a CT scan

of the spine which showed a lot of deterioration in my SI Joints. So

much so, that almost a half of my left SI Joint appears to have

disintegrated. (The scan showed nothing about my spine because of all

the hardware. But to see the SI Joints, they scan the spine. I don't

why, but that's the way it was done when I had my scan in 2006.)

Some may wonder why bother scanning the SI JOints, because no matter

what the scan shows, it is most likely that nothing will be done.

Surgery fusing the SI Joints is the only possibility (so I've been

told), but the chances are that no good would come of that and then,

and I quote two top scoli surgeons " If your SI Joints are fused, you

really wouldn't be able to move. " With emphasis on " really " . Pain

management and stretching exercises have helped me.

I had an open surgery a year ago for a completely ruptured rotator

cuff in my right shoulder. My surgeon and my PT agreed with me that

my scoliosis and surgeries and resulting kyphosis played a part in

causing my rotator cuff problems. (I've never been athletic. I don't

play golf or tennis) Also, it seems to me that the percentage of

rotator cuff problems in post scoli revision patients is higher than

in the overall population. Now I'm beginning to have problems with my

left shoulder but it doesn't feel like a rotator cuff problem. My PCP

had an x-ray taken which showed " moderate degenerative changes " , in

other words, arthritis. I also have a lot of pain in my neck and the

areas of T-1 and T-2 at times, (above the fusion) which I keep under

control with occasional NSAIDS and stretches and pillow placement.

So far, my hips and knees are fine.

I " m 12 years post revision and my age, 68, doesn't help.

So what's next for me? for us? I don't know, but I still feel that

revision surgery was absolutely necessary for me and I'm glad I had it

done. Had I needed to make the choice knowing what would happen down

the road, I still would decide to go ahead with revision. I'm still

better off having had it. I hope you feel the same.

I hope you find a way to feel better.

Bonnie

[Guest guest]

Hey , I haven't posted or caught up on things here in several weeks and I

just now took a look at all of the conversations going on in here...new

revisions, interesting conversations, post op recoveries, etc. and I don't think

I'll be getting caught up on everything soon, so to everyone, I hope everything

is going well and if not, keep on keeping on and try to make for better

days...that's how I try to do it.

And to you, , geez girl. I do hope things will settle down and improve

for you. Just being a single parent and working full time has its demands, let

alone someone with a disability and all things involved in that being on top of

the heap. If wishing could make things better then we'd all be better because I

have enough wish energy to spread around, but unfortunately it just doesn't work

that way. Here's wishing and hoping for some better days for you.

Best,

G