So glad I found you guys!

[Elisa]

Yes, those are all good points Pooka but the fear is definitely the main factor for me... fear of the unknown and fear that I make the wrong decision somehow.

I'm going to try and not obsess over this too much and maybe give myself a break by doing something entirely different. My brother and SIL will be here today around four and I'm going to spend some time with them b/c I haven't seen my brother in years. I think this will be a good diversion.

Also, I talked yesterday with the gal from Shriners who is taking over my son's case and she felt pretty confident that we'd be heading to Portland some time in January. I'm going to try and remain calm and not freak out or scare myself to death until I actually talk to a specialist and get all the proper tests done. That is my rational mind talking but I know I can instantly flip back to being completely irrational and full of fear. One day at a time is what I need to do, just have trouble doing that.

[Pooka1]

One advantage to not being seen until January is that the surgeon can measure the curve on the first radiograph and see if there has been progression between the two time points. With a large, non-painful curve in a boy pre-growth spurt, the surgeon might not recommend surgery right away, especially if no progression is noted. People, including kids, do get to surgery territory and hang there for decades. I'm just saying that you son's curve might or might not hang where it is.

The wildcard is that you say your son is experiencing pain. Still with that, I suspect the surgeon will want to wait for as much growth as possible.

Nobody on this group can guess what the surgeon will say. The only people who can come close are mothers of boys who are your son's age with large curves.

Your case is really something that ideally you need a few opinions from top shelf pediatric surgeons who specialize in spine. If you do get another opinion somehow, do not be surprised if it is different from the first one.

Finally, I do think you will feel better after talking with a surgeon. They are the only people trained to help kids like your son.

[Elisa]

I will definitely feel much better when I finally get to talk to a spine specialist b/c it's been about nine months, maybe more, I'm losing track here but it's been a ridiculously long wait with absolutely nothing from their end. I keep reading about people getting upset and frustrated b/c they have to wait nine weeks! I wish.

Apparently not much happens at Shriners in December b/c they like to send as many kids home for the holidays as they can. Makes sense. January is fine. Seems really really close to me compared to... infinity and beyond!

Those x-rays that I posted were actually his second set and they were taken just over two months ago and he looks a bit worse now I think, but then again it could be all in my head. What's not in my head though, is that he has bright red stretchmarks across his rib hump which he did not have two months ago. His first set of x-rays were taken about nine months ago and his Cobb angle was either 37* or 47* I honestly can't remember.

I think the achy back might be caused b/c of his rotation rather than his curve but what do I know. The chiro did say that his back (on the concave side) is really tight so I'm assuming that's why he has an achy back. His pain is very minimal though and does carry out his daily routing at school including PE but when he gets home he turns on his heating pad and of course starts eating. I am SO glad that he finally has a good appetite and isn't as fussy as he used to be. I think he's gained about ten pounds in two months but he still looks scrawny to me.

I just came across a young Canadian girl from Ontario who has the worst case of scoliosis I think I've ever seen. She was waiting for so long to see a specialist but it wasn't happening so her mom contacted the news and then got a call to contact Shriners so now she's going to the Shriners hospital in Montreal. It was really disturbing. What's going on with our Canadian system!?

Here's the facebook page of the girl with the worst back. Click on the two videos and check it out. I'm glad that poor girl is FINALLY getting some help from the Montreal Shriners.

http://www.facebook.com/home.php?#!/...12751008756843

[Pooka1]

Those x-rays that I posted were actually his second set and they were taken just over two months ago and he looks a bit worse now I think, but then again it could be all in my head. What's not in my head though, is that he has bright red stretchmarks across his rib hump which he did not have two months ago. His first set of x-rays were taken about nine months ago and his Cobb angle was either 37* or 47* I honestly can't remember.

Well, the curve two months ago is at least 75* just eyeballing it and as the chiro told you. Let's call it 77* for ease of calculation.

So that's either 30* or 40* progression in about nine months or ~3* - 4.5* per month average progression rate over 3/4 of a year. That's pretty high, pretty sustained progression rate if these numbers are at all close to accurate. And you'll have a 3-4 month time point when you get another radiograph in January. It will be interesting to see if the progression rate is the same.

Bring all the radiographs you have to the appointment. This is very important.

[Elisa]

I went to the hospital where my son had his two sets of x-rays and have requested they put the images on a CD and they will call me when it's done. I explained a bit about our situation and she seemed very understanding and put a little note on the request to hurry things along. This is why I LOVE living in a smaller town b/c everyone seems so much friendlier, not so stressed and a lot more helpful.

Also got all ready for my passport pic to be taken: hair all fixed up in and up-do and makeup on and the lady at London Drugs told me she couldn't take my picture b/c I was wearing a 2" cream coloured hair band. What!? Apparently you can't wear any head gear at all unless it's for religious reasons. Ack, there's no way I'm going to pull out twenty five hairpins and just to take off my hairband not to mention all that hairspray, I'd look a fright. I'll try again tomorrow.

[jrnyc]

hey Elisa
i sure hope...from what you wrote i guess it is so...that Canada doesn't make their citizens wait 3-6 months for a passport the was it is here in the States!

sounds like things are moving along...

jess

[Elisa]

I've talked to different people up here and it takes about two to three weeks for a passport. I believe you can have a passport in about seven to ten days if you pay the 'rush' fee which I'll do but I need to get those pics first.

Jess, here's the website I was looking at: http://www.ppt.gc.ca/cdn/service.asp...&region=Canada

[Elisa]

I am back with passport pics! Man, they really are very picky about these pics. She must have taken four shots and was still not happy b/c there was a "glare" on my forehead and nose so she asked if she could put some powder on me and I said sure and then she took another one and said my lipstick was too bright and could I rub it off. I asked if I could try some powder on my lips too and she said okay but she still didn't think it was perfect so she asked if I'd like black and whites instead. Yes, I don't care what colour they are just get them done so I can get out of here. I'm so not photogenic. My son's picture was "perfect" with ONE shot.

I've decided not to mail all the info in but instead will take the paperwork to the next town over b/c they have a Service Canada Centre there and I can apply in person which is better I think. That way I can also do a pickup there when they're ready and visit with the mother-in-law as well.

My son had a chiro appointment again today, every Monday after school and he does seem to be helping him somewhat with his backaches so we'll keep going.

[jrnyc]

hi Elisa
yes, i forgot about "rush" services...but they must be very helpful!
i never had problems in the States with any of the passport photos...sounds as if they are very fussy up there...

i hope things come thru quickly and you can come to the States, get some definitive answers, and make some more plans...

jess

[Elisa]

Apparently they have been extremely fussy with pics since 9-11. Understandably so I guess. Yes, one more loose end getting tied up. I can't wait to get my son looked at by someone who actually knows something about this disease. You wait, I'll get everything in order and ready to go and then... BC Children's will call. It's just the way things seem to go.

[Elisa]

Picked up the CD today with my son's images but I can't seem to open it. Any suggestions? I guess I'll take it into work tomorrow to try on one of their computers and ask someone who is better with computers than me. Dang, I was so curious to see his actual x-rays.

Am really glad the local hospital was so quick to help get his images on a CD for me though. LOVE this town! Everyone is being so helpful.

[Pooka1]

It probably has to be unzipped or is otherwise in a program that you have to run to read the radiographs.

I have dealt with two separate programs that allow viewing of radiographs, one for my horse's shots and one for my kids' shots. They were both obvious in term of what to do and(or) came with a readme file with instructions. You may have yet another one so I probably can't advise other than to just run any executable file on the disk.

Can you type out the file list here?

[Elisa]

Yes, it is a 'zipped file'. What exactly do I have to "type out"? I really only have a bit above basic knowledge of the computer. :/

[Pooka1]

I was just asking you to type out the names of the files in the directory so we can help you figure out what to run to unzip the files.

If there is a file with an extension of

.exe

then double click that.

If the files are zipped then see if there is an unzip executable file on the disk. I strongly suspect there is. If not, just double click what you think is the data file and your computer might know it is a zip file and unzip it for you.

[Elisa]

Okay, I managed to open the file and there are three x-rays on it but I clicked 'file' and tried to save them but nothing is happening.