Re: it's now official

July 19, 2001

<<. It feels so strange to see it in print finally>>

It is always hard for me to read any thing in print

about Ted. It is just hard.

Gail

July 19, 2001

as if our kid didn't have enough to deal with , with the down syndrome

alone, is one more obstacle to overcome. -

July 19, 2001

I remember the first time I knew that hearing something officially can cause

grief. I was 14. I knew I had something wrong with my knee, because it was

hurting miserably. I went to an orthopedist, who diagnosed tendonitis, and

put me in a brace and on crutches. As I hobbled out to the car, I remember

bursting into tears. I'd known something was up, but to give it a name and

a treatment was so awful.

When Ian was diagnosed with PDD, after years of doctors patting my hand,

there-thereing the hysterical, imaginative mother, I was relieved and

horrified all at once. I must have had the hope, in the back of my

consciousness, that it all really was my imagination, or that it was a stage

he'd grow out of.

All this is to say, Cheryl, is that I certainly do understand, and you have

my empathy.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

July 19, 2001

I guess that is what it is. I held on to some level of disbelief

even when I did know it was there. Can't pretend it may all be in

your imagination when it is officially stated. It is good to not

have to fight to prove her needs to anyone. But, it hurts to see it

in writing. It hurts to read each assessment that gets done as

well. I leave every assessment in tears. It's enough to know in

your gut that your child is delayed and has some major probs, but to

have it spelled out doesn't feel so good. The good and the bad.......

Thanks for caring everyone. I knew you would all understand the

sorrow that hits at various stages along the way.

I am sooooo glad that I have found each of you.

Cheryl

> I remember the first time I knew that hearing something officially

can cause

> grief. I was 14. I knew I had something wrong with my knee,

because it was

> hurting miserably. I went to an orthopedist, who diagnosed

tendonitis, and

> put me in a brace and on crutches. As I hobbled out to the car, I

remember

> bursting into tears. I'd known something was up, but to give it a

name and

> a treatment was so awful.

>

> When Ian was diagnosed with PDD, after years of doctors patting my

hand,

> there-thereing the hysterical, imaginative mother, I was relieved

and

> horrified all at once. I must have had the hope, in the back of my

> consciousness, that it all really was my imagination, or that it

was a stage

> he'd grow out of.

>

> All this is to say, Cheryl, is that I certainly do understand, and

you have

> my empathy.

>

> CK,

> Mom to Ian (2/89),

> (9/90),

> and Rose (6/94)

December 28, 2007

Jodi,

I was where you are last November 2006. I also wanted to know " how

will I know when I need surgery. " One year later, I am scheduled for

surgery in January. You will " know " . After injections that worked

for a while and different pain killers, you will reach a point where

those pain killers will only " take the edge off " and you are so tired

from the pain by the end of the day, it becomes an intrusion on your

life and you feel you have no recourse. You will have good days and

even weeks and think you're fine, but then it returns and sometimes

with a vengeance. You should not rush into surgery just because it

is inevitable. You need to feel you have exhausted all other avenues

and you will need to plan and get some things in order.

As I said, I am scheduled for surgery on January 28th and I am at the

point where I can't wait to get it done. If you talked to me last

year at this time, I did not feel that way. We are all different and

we all have our own thresholds of pain, but believe me when I tell

you that you will know when the time is right. For now, get the

injections and take the Ultracet. You also might want to ask your

doctor for Lidoderm patches which also work (usually after you are

done with your injections).

Good luck and know that most people on this site can relate and

answer most questions.

Donna

>

> Hello all,

>

> Today my suspicions about having flatback syndrome were officially

confirmed by an orthopedic surgeon specializing in scoliosis. I am

titled forward 36 degrees and have a definite case of flatback

syndrome. Discs below Harrington rod fusion are degenerating.

Doctor recommended a CT scan and pain management injections for now.

Also gave me a prescription for Ultracet. He told me to come back

and see him if the pain gets worse, but also told me that he's

certain I'll be back. Doesn't recommend surgery for now, but sounds

like surgery is definitely in my future if pain gets worse. How bad

does this need to get before surgery is needed? I don't want to have

further damage to my posture that might be irreversible by holding

off on surgery to wait for pain to increase. Any thoughts or advice

on this?

>

> Jodi

>

December 29, 2007

So sorry to hear of your " diagnosis " . I understand. I was where you

are about 2 yrs ago. Luckily, you found a local doc that knows

something about flatback/scoliosis. I wasn't that lucky when I had to

go to a local doc. Anyway, he only did a CT without the Mylogram, and

I should have had a mylogram to show the disc degeneration and all

the other related " stuff " . Luckily, I was already part of this forum,

and I knew there were doctors about 200 miles away that know about

all that, and knew that I'd have to have surgery with them. I had my

surgery in March 2007.

I was bent forward, but I believe they measure it in centimeters. I

was bent forward at only 9 cm, but it caused my neck to have pain in

it. Now I don't have pain in my neck! If you are truly bent forward

36 degrees, that's a SIGNIFICANT lean, and one you will have to get

surgery addressed sooner or later. in this forum leaned

forward quite a bit, and she's straight now. You can look up our pre-

surgery x-rays in the pictures section.

Well, good luck and hope to hear more from you.

Carol V.