Cathy

[Guest guest]

Noticed your comment about sciatica, which I also have along with bad hip and knee, and was curious as to what your doc says about improving sciatica condition by doing the knee?

Ben

Re:

Hi ,

Yes, Im eventually going to have TKR because I can not walk at all without crutches now. No cartilege left in the knees.

Ok I understand now about the cpm machine. The machine keeps the joint moving but its the PT that really gets things moving, right?

Sciatica is very painful and sometimes will literally drag you down to the floor. Its like you take a step and put pressure on the leg that has sciatica and bam you are down on the floor if you are not careful. Doesnt happen alot but Im really careful now and dont move the wrong way.

I too, prefer the bed but since Im pre opt now I dont have much choice in how I can sleep as the bed is just too painful right now. I think the recliner cradles my body better than the bed at the moment and that will all likely change once I get the knees replaced.

I have varicose veins in my left leg too and sometimes suffer from flare ups.......I hope this doesnt mean Im more prone to deep vein clots!

I can see your recovery is working out really well and Im really glad for you.........soon, this will all be a thing of the past!

By the way, Im delighted to know another hearing impaired person.......Ive worn a hearing aid since age 3 which is a long, long, long time LOL

Cheers

Judie

[Guest guest]

Hi ,

If you would like an opinion from Shriners I would TOTALLY recommend Salt Lake City with Dr. D'Astous. Alot of us have him for our Dr., and he is honest and has a great bedside manner. I would make an appt. soon because the wait can be long.

The # is 801-536-3500 you need to ask for aplications and do an application over the phone. You should do it sooon and if you change your mind you can always cancel.

Crista

[Guest guest]

> Sorry I mispelled your name.

Hi Celia,

I forgive you!! Yes I did say that Nicky's curve is at 75 degrees.

We have had 4 opinions, and all have recomended surgery, which is

supposed to be in the next 3-6 months. But, in the meantime we plan

to take him to one of the Shriners hospitals for 1 more opinion! I

guess we will wait and see what they have to say.

Thanks for the advice! Hope to talk again soon!!

[Guest guest]

,

Won't any of the three doctors that you have seen so far cast Nicky ?

I'm sure they are all aware that once a curve progresses beyond 40 or

45 degrees that conventional braces will not hold curves. Tell them

that you INSIST that your child be casted, don't take no for an

answer. This is your baby. What they are planning to do will deform

him for the rest of his life. His spine will stop growing or grow

very little after it is fused. Demand action. In the mean time make

arrangements to see Dr. D'Astous in the event that none of your

doctors will cast.

My daughter had a 68 degree curve before going into her first cast.

Her doctor was already talking spinal fusion. You can imagine what a

shock that was for me. Today her curve is at 13 degrees and the

future is bright. He has told me that spinal fusion is no longer an

option. Whenever I go for these clinic appointments he has this

great big smile on his face, this is one happy doctor !!

Celia

> > Sorry I mispelled your name.

>

>

> Hi Celia,

> I forgive you!! Yes I did say that Nicky's curve is at 75 degrees.

> We have had 4 opinions, and all have recomended surgery, which is

> supposed to be in the next 3-6 months. But, in the meantime we plan

> to take him to one of the Shriners hospitals for 1 more opinion! I

> guess we will wait and see what they have to say.

> Thanks for the advice! Hope to talk again soon!!

>

[Guest guest]

,

Your info/video is in the mail.

Please watch before seriously considering spinal surgery.

talk soon,

H.

[Guest guest]

,

Thanks for joining the group. I hope you will continue to remain in this group, because the experience that your son, you and the entire family are going through is sure to help someone else.

I know that it is very hard to make these life altering decisions such as surgery.

So your sons ortho doc stated unequivocally that a series of corrective plaster jackets wouldnt decrease your babes curve? Your babe has non structural, right? (sorry, its hard to keep track).

Your sons case is a tough one...How old is he again?

I think if he was 5 months old, I would really be pushing/suggesting casts, but he is almost 2, right? Not that that means much. For example, was 2 yrs and 4 months before her 1st cast was applied. She has had wonderful results from serial corrective plaster jackets. Her initial curves were at around 50, and now a year later are at 10 and below. I realize that 80 is quite a bit bigger, but whats to loose?

Bottom line, Im sure you already know this, but if you have any inclination/feeling that a series of casts may help your boy...I would try it. A series of jackets would never hurt him, only help. Whether it was to maintain him till he got a little growth, or who knows, maybe he is really flexible and correction could be attainable.

Either way, I want to congratulate you on getting educated/informed on treatments available.

Its obvious that you have found out early on, that you will be the only effective advocate for your babe.

Good luck with evrything, and please keep us posted.

Send the video whenever you have time. ( No big deal.)

Sincerely,

HRH

[Guest guest]

Okay I just talked to and she also told me to up the protein and

exercise also. I am going to journal some changes she suggested and for the

next 5

months until my one year anniversary and see what happens. I will keep you

posted.

donna pinto

12-9-03

273/215

[Guest guest]

Donna want to share what else she told you?

Anne Hansen

1/26/04

> Okay I just talked to and she also told me to up the protein

and

> exercise also. I am going to journal some changes she suggested

and for the next 5

> months until my one year anniversary and see what happens. I will

keep you

> posted.

>

> donna pinto

> 12-9-03

> 273/215

[Guest guest]

Hey ,

My day starts out at about 4:30 am I cant eat as soon as I get up, Never have

been able to. I start out by drinking by Gatorade and taking the vitamins. I

am not able to eat the yogurt any more due to gagging while trying to eat it. I

go to the gym before work and walk at least 1 mile and ride the bike for a short

period of time. Then I shower and head to work. On the way to work now I stop

and get 1 egg or I have instant grits here that I eat at 8-815. I still have

the gatorade glued to the desk lol at around 10-1030 I eat 2 salitines. Then

around 12 I eat some broth and 2 more salitines. O! I forgot to add I take 1

creatine tablet in the morning, 1 prilosec, 1 vitamin, 1 vitamin E and 2

citrucel tabs. Then when I eat I take my actigall.

I might snack on saltines again around 2-3, then head home and have supper. The

last few days I have eaten either a baked potato or mashed taters. Anther

vitamin, and the actigall. Then before I go to bed I snack on something

usually what is left from supper and take the other two citrucel tabs. I just

started the creatine Saturday and I am going to try the whey protein starting

tomorrow. I looked into getting the glutamine (Sp) but havent gotten it yet.

This is my typical day, am I doing something wrong?

Thanks

__________________________________________________

[Guest guest]

ok amanda.... here is my words of wisdom.... (you seem to be doing

things right to me!!)

anyway

my sweet hubby told me during a 2 month plateau that i HAD to

lose..... if i didnt i would become rich because people in 3rd world

countries were looking for something to prevent starvation in the

absence of food!! (famines etc) I laughed and laughed... i imagined

dr R out in the desert in a tent doing MGBs on natives in preparation

for a famine!

if it isnt going in....you WILL lose. it is the nature of....well

nature! give it time!

ALSO..... you can post/email me on the board....dont quit posting--

geeez louise!! this is just a spat.... " families " like the post op

list have spats every now and again!! by the way you can email me

privately anytime-- as long as you dont call me names!!

LOL......c'mon....SMMMMMMMILE!!!

xoxoxoox

cathy s in va

> Hey ,

>

> My day starts out at about 4:30 am I cant eat as soon as I get up,

Never have been able to. I start out by drinking by Gatorade and

taking the vitamins. I am not able to eat the yogurt any more due to

gagging while trying to eat it. I go to the gym before work and walk

at least 1 mile and ride the bike for a short period of time. Then I

shower and head to work. On the way to work now I stop and get 1 egg

or I have instant grits here that I eat at 8-815. I still have the

gatorade glued to the desk lol at around 10-1030 I eat 2 salitines.

Then around 12 I eat some broth and 2 more salitines. O! I forgot to

add I take 1 creatine tablet in the morning, 1 prilosec, 1 vitamin, 1

vitamin E and 2 citrucel tabs. Then when I eat I take my actigall.

> I might snack on saltines again around 2-3, then head home and have

supper. The last few days I have eaten either a baked potato or

mashed taters. Anther vitamin, and the actigall. Then before I go

to bed I snack on something usually what is left from supper and take

the other two citrucel tabs. I just started the creatine Saturday

and I am going to try the whey protein starting tomorrow. I looked

into getting the glutamine (Sp) but havent gotten it yet.

> This is my typical day, am I doing something wrong?

> Thanks

>

>

>

> __________________________________________________

>

[Guest guest]

(Need more protein)

Marley

> Hey ,

>

> My day starts out at about 4:30 am I cant eat as soon as I get up,

Never have been able to. I start out by drinking by Gatorade and

taking the vitamins. I am not able to eat the yogurt any more due to

gagging while trying to eat it. I go to the gym before work and walk

at least 1 mile and ride the bike for a short period of time. Then I

shower and head to work. On the way to work now I stop and get 1 egg

or I have instant grits here that I eat at 8-815. I still have the

gatorade glued to the desk lol at around 10-1030 I eat 2 salitines.

Then around 12 I eat some broth and 2 more salitines. O! I forgot to

add I take 1 creatine tablet in the morning, 1 prilosec, 1 vitamin, 1

vitamin E and 2 citrucel tabs. Then when I eat I take my actigall.

> I might snack on saltines again around 2-3, then head home and have

supper. The last few days I have eaten either a baked potato or

mashed taters. Anther vitamin, and the actigall. Then before I go

to bed I snack on something usually what is left from supper and take

the other two citrucel tabs. I just started the creatine Saturday

and I am going to try the whey protein starting tomorrow. I looked

into getting the glutamine (Sp) but havent gotten it yet.

> This is my typical day, am I doing something wrong?

> Thanks

>

>

>

> __________________________________________________

>

[Guest guest]

I'm not , but I'm thinking you may want to up your protein a bit. I

know that is hard on Stage 2, but think eggs, and that sort of thing rather

than a lot of potatoes and crackers. Of course, it depends on what your

stomach can handle, but grits, crackers, and potatoes all have very high

glycemic indices and more protein might " kick start " things a little. Some

of the protein drinks are very low in sugars and fat, and they would also be

a good choice.

Good luck...I KNOW that this is frustrating, and I sympathize. But I do

think it will pick up soon!

Joanie

5/25/04

Drs. Walsh and Rutledge

290/240 (as of August 25; I weigh monthly)

>From: Trump <atrump24@...>

>Reply-

>

>Subject: Re:

>Date: Mon, 30 Aug 2004 13:28:07 -0700 (PDT)

>

>Hey ,

>

>My day starts out at about 4:30 am I cant eat as soon as I get up, Never

>have been able to. I start out by drinking by Gatorade and taking the

>vitamins. I am not able to eat the yogurt any more due to gagging while

>trying to eat it. I go to the gym before work and walk at least 1 mile and

>ride the bike for a short period of time. Then I shower and head to work.

>On the way to work now I stop and get 1 egg or I have instant grits here

>that I eat at 8-815. I still have the gatorade glued to the desk lol at

>around 10-1030 I eat 2 salitines. Then around 12 I eat some broth and 2

>more salitines. O! I forgot to add I take 1 creatine tablet in the

>morning, 1 prilosec, 1 vitamin, 1 vitamin E and 2 citrucel tabs. Then when

>I eat I take my actigall.

>I might snack on saltines again around 2-3, then head home and have supper.

> The last few days I have eaten either a baked potato or mashed taters.

>Anther vitamin, and the actigall. Then before I go to bed I snack on

>something usually what is left from supper and take the other two citrucel

>tabs. I just started the creatine Saturday and I am going to try the whey

>protein starting tomorrow. I looked into getting the glutamine (Sp) but

>havent gotten it yet.

>This is my typical day, am I doing something wrong?

>Thanks

>

>

>

>__________________________________________________

>

[Guest guest]

HI CATHY, MIRIAM HERE

DON'T EVER STOP POSTING, NOT MANY MGBERS LEFT HERE SINCE I STARTED MY

RESEARCH NOW ALMOST 2 YEARS AGO AND 14 MONTHS POST OP.

[Guest guest]

cathy,

your son is the first little boy that i have heard of that sounds likes my son. i son who is 4 1/2 is dx with the same seizures and has the same behaviors from them. to the point that they were so violent we didn't know what was going on. did your son's eeg's come back positive or negative? they just started my son on neurotin and he is doing ok so far. we notice that if he has a hissy fit that, that seems to thru him into one of these seizures. how long has your son had these? do you have anyother warning signs?

chris

[Guest guest]

,

I think that meant it is a "shame" to have to do surgery if there are other options. You are right, every child is different and some kids will need surgery, maybe even my son someday. I think that we all can agree that avoiding surgery (if it is possible) is the best option for kids that can possibly be corrected by casts. I am glad that your son is doing well, but we also have Mom's here who have had not had success with growth rods and had to have them removed, also fusions that had to be unfused. I know of 2 children in our group who this has happened to. We also have a little girl here who was 66 degrees who is now done to 8 degrees (). was close to 60 and is now 23, Tyler was 50 and is down to 8, and the list goes on.

We wish the best for you and Nick!

Crista

[Guest guest]

Hi Christa and

I'm going to jump in with my humble opinion. I believe the surgery

that 's little guy had/s is The Rib. Is that right ? In

which case there is a difference between Growth Rods, Fusion and the

Titanium Rib.

The Titanium Rib is done in cases of a very high curve, andI 'think'

it works well with Congenital cases better than Casting.

Often we (the scared, sometimes confused parents) read

that " surgery " is a last resort, but I honestly think it depends on

the type of surgery we're talking about.

I'm one of the lucky ones where casting is doing wonders for my

child, but I know of a couple of " Internet Friends " where casting

wasn't successful, and they're last hope is the Rib.

Just to clear that up......

Jacki

>

>

> ,

> I think that meant it is a " shame " to have to do surgery

if there are

> other options. You are right, every child is different and some

kids will

> need surgery, maybe even my son someday. I think that we all can

agree that

> avoiding surgery (if it is possible) is the best option for kids

that can

> possibly be corrected by casts. I am glad that your son is doing

well, but we also

> have Mom's here who have had not had success with growth rods and

had to have

> them removed, also fusions that had to be unfused. I know of 2

children in

> our group who this has happened to. We also have a little girl

here who was 66

> degrees who is now done to 8 degrees (). was close

to 60 and

> is now 23, Tyler was 50 and is down to 8, and the list goes on.

> We wish the best for you and Nick!

>

> Crista

[Guest guest]

Point taken. I made a wrong assumption( about the woman on the other

baord who appears to be ) out of my complete and total

ignorance. I'm very humbled.

> >

> >

> > ,

> > I think that meant it is a " shame " to have to do surgery

> if there are

> > other options. You are right, every child is different and some

> kids will

> > need surgery, maybe even my son someday. I think that we all

can

> agree that

> > avoiding surgery (if it is possible) is the best option for kids

> that can

> > possibly be corrected by casts. I am glad that your son is

doing

> well, but we also

> > have Mom's here who have had not had success with growth rods

and

> had to have

> > them removed, also fusions that had to be unfused. I know of 2

> children in

> > our group who this has happened to. We also have a little girl

> here who was 66

> > degrees who is now done to 8 degrees (). was

close

> to 60 and

> > is now 23, Tyler was 50 and is down to 8, and the list goes on.

> > We wish the best for you and Nick!

> >

> > Crista

[Guest guest]

Please don't me apologetic.... Its quite a common " mistake " I think.

I just wanted to point out (and not just to you) that not all

surgeries are *bad*!

Its way better to ask questions and learn whats best for our kids.

Good Luck with your little one, and keep asking and doing the

research!

Jacki

> > >

> > >

> > > ,

> > > I think that meant it is a " shame " to have to do

surgery

> > if there are

> > > other options. You are right, every child is different and

some

> > kids will

> > > need surgery, maybe even my son someday. I think that we all

> can

> > agree that

> > > avoiding surgery (if it is possible) is the best option for

kids

> > that can

> > > possibly be corrected by casts. I am glad that your son is

> doing

> > well, but we also

> > > have Mom's here who have had not had success with growth rods

> and

> > had to have

> > > them removed, also fusions that had to be unfused. I know of

2

> > children in

> > > our group who this has happened to. We also have a little

girl

> > here who was 66

> > > degrees who is now done to 8 degrees (). was

> close

> > to 60 and

> > > is now 23, Tyler was 50 and is down to 8, and the list goes

on.

> > > We wish the best for you and Nick!

> > >

> > > Crista

[Guest guest]

> > > >

> > > >

> > > > ,

> > > > I think that meant it is a " shame " to have to do

> surgery

> > > if there are

> > > > other options. You are right, every child is different and

> some

> > > kids will

> > > > need surgery, maybe even my son someday. I think that we

all

> > can

> > > agree that

> > > > avoiding surgery (if it is possible) is the best option for

> kids

> > > that can

> > > > possibly be corrected by casts. I am glad that your son is

> > doing

> > > well, but we also

> > > > have Mom's here who have had not had success with growth

rods

> > and

> > > had to have

> > > > them removed, also fusions that had to be unfused. I know

of

> 2

> > > children in

> > > > our group who this has happened to. We also have a little

> girl

> > > here who was 66

> > > > degrees who is now done to 8 degrees (). was

> > close

> > > to 60 and

> > > > is now 23, Tyler was 50 and is down to 8, and the list goes

> on.

> > > > We wish the best for you and Nick!

> > > >

> > > > Crista

[Guest guest]

I try to keep it around 2000. I lost a lot of weight on 1800-2000, so

even though I could drop down the calories a bit more, slow is better

for me

~Anne

>

> Hi Anne. I know it must be so frustrating to you, but you have the

right idea. I like

> what you said about dusting yourself off and starting over. Gosh,

have I done that a

> gazileon times. How many calories are you suposed to have anyway?

>

>

[Guest guest]

Hi

Thanks so much for the information I will be sure to check out the site you sent. I'm so tired my eyes hurt from reading so I'll proably call it a night and try to get some sleep if and my littlest one decide to let me. 's Birthday is August 14, 2002. I sure hope we do get some answers on Tuesday. I just know after dealing with Military doctors all my life they aren't quick to tell you what's going. I know what you mean about not answering your question if they won't I won't stay with them either. I'm mainly looking for what type of questions I should ask plus I would like to be able to understand what they are talking about at least somewhat. Thanks again I'll keep you'll posted.

,I hesitate to get you going down this path because I really am not sure or anything. Here is a site that explains hemivertebra. Even if she does not have this, it will be helpful to know about it. My dd has this and so do quite a few other members. To me, on the left side of the xray, on the left side of where the curve is the most curvy, it seems like there is a piece of vertebra that does not go all the way across, it is just on the left side. Please know that I could be wrong about that though. Here is an article about the hemivertebra. The one I am talking about would be a lateral hemivertebra. Here is the site:http://www.thefetus.net/page.php?id=112You may have to paste it in the thing on top (browser??) I will tell you that a dr. here wanted to do a major surgery on my dd when her curve had gotten to be 45 degrees. I asked him how many specifically he had done like the one he was plannning, and he said a couple, to me that meant one, and that was not good enough for me. Plus, he did not let us ask as many questions as we wanted, he got irritated with us, and said that we should just leave it to him and not worry about it. I mailed the xrays to Dr. Emans in Boston, and he agreed with me that the surgery was not as urgent as the dr. here said it was. He gave his opinion in an email. We then went to see him and we have stayed with him even though we have to travel far. If you don't get enough answers there, maybe you could do the same. He is not at a Shriners though. They will probably tell you if it is congenital or idiopathic on Tues. Then you can see which Shriners to go to. Does she have any other abnormalities? My dd has other abnormalities. If she has idiopathic, I have been very impressed by the results of the casting. If my dd had idiopathic I definately would do the casting. My dd has her rib cage misshapen so her dr. told me that she cannot have the casting. With all of this stuff, it is so much to take in, try to take in a little at a time and then take a break. Then read it over again, etc. I find that if I read some of the stuff over and over again, eventually I can understand it. I hope you got some rest so your headache goes away. I know I first saw my dd's xray I was freaked. A couple days later she was up all night crying, I was sure it was her back, I took her to the ER. When I got there, there was plenty of company, they gave me a pager and told me they would page me in a couple of hours or so...since I did not have permission to go to the ER from the HMO, I kept thinking about how much the trip would cost,, and she stopped crying, so I went home. It took a month for them to do the MRI. My dd is now two and a half, when was born?get some rest,

[Guest guest]

Hi

Thanks so much for the information I will be sure to check out the site you sent. I'm so tired my eyes hurt from reading so I'll proably call it a night and try to get some sleep if and my littlest one decide to let me. 's Birthday is August 14, 2002. I sure hope we do get some answers on Tuesday. I just know after dealing with Military doctors all my life they aren't quick to tell you what's going. I know what you mean about not answering your question if they won't I won't stay with them either. I'm mainly looking for what type of questions I should ask plus I would like to be able to understand what they are talking about at least somewhat. Thanks again I'll keep you'll posted.

,I hesitate to get you going down this path because I really am not sure or anything. Here is a site that explains hemivertebra. Even if she does not have this, it will be helpful to know about it. My dd has this and so do quite a few other members. To me, on the left side of the xray, on the left side of where the curve is the most curvy, it seems like there is a piece of vertebra that does not go all the way across, it is just on the left side. Please know that I could be wrong about that though. Here is an article about the hemivertebra. The one I am talking about would be a lateral hemivertebra. Here is the site:http://www.thefetus.net/page.php?id=112You may have to paste it in the thing on top (browser??) I will tell you that a dr. here wanted to do a major surgery on my dd when her curve had gotten to be 45 degrees. I asked him how many specifically he had done like the one he was plannning, and he said a couple, to me that meant one, and that was not good enough for me. Plus, he did not let us ask as many questions as we wanted, he got irritated with us, and said that we should just leave it to him and not worry about it. I mailed the xrays to Dr. Emans in Boston, and he agreed with me that the surgery was not as urgent as the dr. here said it was. He gave his opinion in an email. We then went to see him and we have stayed with him even though we have to travel far. If you don't get enough answers there, maybe you could do the same. He is not at a Shriners though. They will probably tell you if it is congenital or idiopathic on Tues. Then you can see which Shriners to go to. Does she have any other abnormalities? My dd has other abnormalities. If she has idiopathic, I have been very impressed by the results of the casting. If my dd had idiopathic I definately would do the casting. My dd has her rib cage misshapen so her dr. told me that she cannot have the casting. With all of this stuff, it is so much to take in, try to take in a little at a time and then take a break. Then read it over again, etc. I find that if I read some of the stuff over and over again, eventually I can understand it. I hope you got some rest so your headache goes away. I know I first saw my dd's xray I was freaked. A couple days later she was up all night crying, I was sure it was her back, I took her to the ER. When I got there, there was plenty of company, they gave me a pager and told me they would page me in a couple of hours or so...since I did not have permission to go to the ER from the HMO, I kept thinking about how much the trip would cost,, and she stopped crying, so I went home. It took a month for them to do the MRI. My dd is now two and a half, when was born?get some rest,

[Guest guest]

Hi

the other x-rays I think show some of where the curve now seems to be but I could be wrong there is no apparent curve in the first set of x-rays I'm taking them all to the specialist tomorrow he'll know better what we are looking at. only seems few worn out no apparent sickness to be causing the fever they ran a blood test which we were told seems normal on Friday. It's just stressing that I'm dealing with so many different doctors at two different locations at the moment hopefully once we see the specialist he'll be the only on in the military hospital we'll be dealing with. Our Pedi has now hand this case off to the specialist and can't seem to get anymore answers then I already got. Tomorrow will come and I'll go from there. I'll let you'll know what I find out. I will be writing a lot of questions down tonight so I hope I don't forget something if anyone knows of things I should ask pleae let me know. I'm kind of going in blind except for what you'll have told me

CAthy,my dd was put under with a fever, but that was because she had the fever bc a pendant was lodged in her esophagus and they had to do a bronchoscopy to get it out. Generally, if it is not an emergency, they don't want to put them under with a fever, I think. We had to cancel another procedure bc Gabi got sick once. Gabi had a cough and they still put her under for her MRI, bc she had no fever.Just curious, did they do any blood work? My brother had leukemia, and he had all sorts of things going on. He was 30ish at the time, he had little purple dots on the insides of his arms, he was catching every virus that came near him, he was very weak and could not stand well. His chest x ray came out abnormal and so did his blood work, if I remember right. He has been cancer free for 5 years now. Is she showing signs of illness other than the fever? One idea would be that if she gets a fever and her back still hurts, take her to the ER. Can your pedi do anything about making sense out of this all? Can he or she make some calls or something? Can they at least check that lump out? Does the specialist know that she is in pain? /sorry, i know you are already frustrated, My dd has not had pain with her congenital scoliosis and i have heard that it is not generally painful. When her curve was worse, she did have a little lump next to her spine, from it moving things over, the blood vessels over it were like showing a little bit, but it was right where her curve was the most curved, between her shoulder blades. How frustrating this must be. Maybe get out a notebook and start writing down who tells you what and the date and everything. I hope the specialist will be able to explain things tomorrow. . One other thing I was wondering, did they just take an xray of her lower back last time? It seems like they would have at least gotten some of the thoracic spine in the x ray since she is still small. Some people recommend taking a small tape recorder to the appointments, I never get up the guts though. good luck tomorrow.

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that would be wonderful I would like to read the book. Thank you for the insight on x-rays I plan to take what we have with us and if they want to do more I'll just say sorry but she's had enough done recently. I will be sure to post on the veptr sight later thanks I didn't know about that site. I've very relieved to say the least at least I know we have another route to take besides the military.

,I am glad you got the appointment. I think you will feel better when you know you have someone to trust with . Once you can trust someone, it is a great weight off. You may want to post on the VEPTR site, as there are moms who go there to Dr. Betz maybe they could tell you the hotel information, the shriners here gave us hotel information, so you could also call them , but usually moms know better about where a good place to stay is. http://www.veptr.comMy only warning about seeing opinions would be to make sure they are good and can help you before you let them do more x rays. We had the experience when we were getting second and third and fourth opinions, where some wanted to take their own x rays, it was uneccessary, they did not show anything better. Now, I make sure who I trust before letting them take more xrays. BTW, I have a book written by a mom whose dd has congenital scoli, I could mail it to you if you are interested. I have read it, and I am not the type to read a book more than once. I think Gail said she has read it too.

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Thanks

I know her x-ray isn't the best but I see what you are talking about thanks

Okay I put a picture in the end of the photos of 's xray with the part I was talking about highlighted, and next to it what Gabi's cervical hemi looks like in the box. just thought it was interesting. I drive myself nuts over this stuff, you might not want to drive to insanity with me!!! This is what i do with my anxiety, just ignore me if you think I am nutty!!