spinecor

[Allegra]

Maria,
Dr. Aminian is very nice and professional, and his office is nice. I have nothing against him except tht he makes a billion dollars a year (which you can see from his shiny leather shoes and suit) for telling kids they have to wear braces. The first time i saw him, he told us he thought spinecor was nothing more than a few straps that would do nothing. and when we came back in august he couldn't say enough about how impressed he was with the spinecor program. go figure. he was a little late, but apparently he had just finished doing brain surgery on a baby or something. idk.
Oh yes, i think he was the first doctor to do the VBS procedure on the west coast.

wnorm,
I was only supposed to have to wear it this year.
I checked with my mom, carefully avoiding an arument, and she said it was about $3,000. but there were no xrays.

Pam,
You're exactly right. I'm trying to find the person who fit my brace...i believe he is a prosthetics engineer, not a doctor. i don't understand why Aminian would send me there, but i'm looking for it right now.
Once again, i'll be taking things into my own hands, but i can handle it.
I've seen the schedule spinecor doctors follow, xray every 3 months, in brace, and an out of brace one every 6 months and all that. i would love to get this doctor for not following protocol. He also put the bolero upside down, as i noticed from the pictures Dr.GORRIE was nice enough to give me. This "prosthetics maker" said to go to dr. aminian for xrays, which we never did, but they should have been taken right then and there. I expect that Spinecor Assissted Software, and I better get it. I don't want that guy getting away with this. Plus, if i don't find this guy on the list, which is how i found dr. gorrie, i will certainly not back down.
Pam, thank you for turning my feelings of confusion/sadness/anger into determination. I definitely plan on going to a counselor, but i want to start this first.

Jill,
All this "prosthetics maker" did was put it on and show me what my "corrective position" or something was supposed to look like. I had an xray a month before when i saw Dr. Aminian, but there should have been xrays as i was getting it to see which way would work best.
Funny you should mention making appointments. When i asked my mom wht the name of the doctor was, which she didn't even know, she was like, you better not make any appointments without me. if i have to, i'll get my friend to take me. i really want to see dr. gorrie.


EVERYONE: thank you so much for caring. it really means a lot to me. and i'm going to figure this out. obviously, it's up to me. woo. haha

[rtremb]

Well not good news today. Esme's curves have progressed to T63, L64. Not good. We will now have to go with surgery. Esme's back doesn't look so bad and her posture is excellent still but we know if we do nothing she will suffer badly as an adult so........

Ruth

[Allegra]

Pam,
I knew it. That "prosthetics engineer" isn't even on the freaking list!
but why would a famous surgeon send his patients to someone not accredited to fit the spinecor? This guy does make braces, but not spinecor. I'm so disappointed.
However, I took long lookat the list, and I noticed dr. gorri is doing some spine cosultation for free. so is another doctor, dr. colvin. i did spend some time gong through his website and found that he is looking for 4 kids with scoliosis to brace with the spinecor so he can finish his training. they get like $500 off the brace and 50% off all appointments. as for the consultations, he gives them for free. I think i'm going to investigate this, and if i'm allowed, i'm going to ask my friend to take me. Maybe then i can really learn what's going on with my spine now.

Ruth,
I'm so sorry Esme has to get surgery, but at least you know you've done all you could have. Plus, with all the rolfing or whatever, her spine might be more flexible and easier to fuse straighter.....not trying to give you false hope about better correction, just an idea.
I hope you and Esme are doing okay.

[mariaf]

The first time i saw him, he told us he thought spinecor was nothing more than a few straps that would do nothing. and when we came back in august he couldn't say enough about how impressed he was with the spinecor program. go figure.

Hi Allegra,

Yes, that is odd that he had such a change of heart regarding Spinecor.

Keep doing what you are doing - asking questions, demanding answers - hopefully you will get to the bottom of this whole thing about why it seems you were sent to someone who is not certified to fit patients with the Spinecor brace. I know there is a lot on your young shoulders but you're handling it well. Don't be afraid, though, to ask for help from any adults in your life that you trust and can talk to (other relatives, counselors, etc.)

Good luck!

[LorDon]

Hi Ruth,
I'm so sorry to hear that Esme needs surgery. I know the sadness that you are feeling. You are a great Mom who has done everything possible to avoid this surgery and your kids are so lucky to have you as a Mom.

Big hugs to you,

[MATJESNIC]

Ruth,

You know how sorry I am. Your extreme disappoint is something I understand fully. Ten months ago I was in your shoes exactly. I have never known any Mom who fought so hard to try to keep their child from surgery like you have. It is out of your control. You will get through this. Esme will get through this and everything will be okay. I'm very sorry. Please know that I am always here for you and you have so many people who want to support you. Please keep us posted. How is Esme handling all of this?

[WNCmom]

Ruth--

You've been such an inspiration to me--and I know you've done all you can to avoid surgery for Esme. Everyone here is right--you're a great mom and Esme is a lucky girl. We are all here for you and will do our best to support you as you move forward. And chances are, I'll be following in your footsteps before too long as well. This has got to be difficult. Please know I'm thinking of you and your family.

Mary Ellen

[jillw]

Ruth, I'm so sorry to hear that Esme will require surgery. I know you have tried so hard to leave no stone unturned and I'm sorry it didn't work out. How is Esme feeling?

[Sherie]

Ruth

I too am sorry to hear. You have done all you can, the scoliosis was going to progress no matter what. We all understand your heartache but everything will be ok. Esme sounds like a very resilient girl, as most of us have probably experienced, the kids get through this much better than the parents. How soon do you expect to schedule surgery?

[swimmergirlsmom]

Ruth, My heart goes out to you guys as I'm sure you are all emotionally drained right now. You are an amazing mom and an inspiration to us all. You have done everything you could do avoid surgery for Esme and sometimes these things are just out of our control. I admire all your efforts and appreciate everything you've shared with us. I'm sure all the conservative treatments have helped Esme be more flexible and will make this next journey be more successful. Please let us know how Esme is doing.
Jackie

[rtremb]

Thanks for your kind words. We are all more than a bit shocked. Her back really doesn't look that bad.

Esme is vocalizing her feelings to us which is good. She is very scared but is walking around singing tonight. Hard to read her real reaction yet I think. She has been googling rods and screws tonight!! She wants to know all about it. She goes on Spinekids a fair bit so she has followed the stories of other children having the surgery so she knows a fair bit about what to expect.

We have tried everything we could and a big part of me still can't believe this is happening. I am still wondering whether it is too late for a cheneau light brace but I am thinking it is and we very much doubt Esme would wear it anyway. There is also schroth therapy in Germany but again it is probably too late now for this. I still can't quite give up hoping but I am thinking it is important at this point to help Esme get through this with the minimum amount of fuss - as her Dad said "not to go kicking and screaming all the way"!!

We don't know when the surgery will be yet. We will go back to the Children's Hospital of Eastern Ontario here in Ottawa now. We would, for sure, have had Dr. Rivard do the surgery in Montreal but he is no longer doing surgeries. So we will go back to CHEO. Dr. Rivard gave us a referral to Dr. Jarvis who is the head of orthopaedics and who we have seen once before. We really liked him when we saw him - he is soft spoken and was very gentle with Esme when he examined her. He also took the time to talk to us and answered our questions very well. I am not sure though whether he does the spinal fusion surgery though. Will have to call CHEO tomorrow or Monday. We also have the choice to go to Sick Kids in Toronto.

Ruth

[Susie*Bee]

Dear Ruth-- I just want to echo what others have said about how you have been there, doing all you could, for so long. You are such a supportive, loving mother. It's funny (as in peculiar, not humorous) how quickly our hopes can be dashed... but if I know you, from your posts, as soon as this initial numbness from shock wears off, you'll be moving on to this next phase and not looking back. Sometimes we're dealt cards we don't want-- but then we just have to examine them and see maybe they are just as workable-- and possibly even better-- than what we had originally hoped for. The surgery and recovery will be difficult for you all, there's no getting around that-- but in the long run it should provide the stabilization that her body needs to prevent really serious consequences later. She has such large curves...

I'm so glad to hear she's talking (even singing!) and doesn't seem to be internalizing it all. She's such a smart girl to be already searching about screws and rods! Google is great, isn't it! I think the best way to fight fear is through knowledge. Knowing what you're up against-- and what to expect-- makes the fear that comes with moving into the surgery mode much more manageable. I don't mean that there's ever any way to not be afraid, but rather that knowing more helps you to be better able to deal with it.

From one mom to another, I am really feeling for you right now. I know you would much rather have the surgery for her, if that were in any way possible. Instead, you'll just continue to be that very strong, supportive mom that loves her always, and shows it even more so at times like this when she needs you most of all. You are super at that. Keep us posted with plans and feelings and all. I wish I could give you a big hug...

[flowerpower]

Ruth,

Not much more I can add, but I too am sorry to hear Esme will have to move forward with surgery. As a mom, I know how hard that news is to take, especially after the diligence you've taken in seeking non-surgical treatment. I know you both will do well to research and prepare, and of course you have the support of everyone here.

Take care,
Renee

[christine2]

Hi everyone

Here are Dierdre's X rays from Celia

Orig. May 2002

Most recent 3/2008

After serial casting and Spinecor. I myself am just amazed at the results!!
May 2002
http://i41.photobucket.com/albums/e2...firstx-ray.jpg

March 2008
http://i41.photobucket.com/albums/e2...rdre032008.jpg

[amandap]

Hi Christine,

Thanks for the update but I have a few questions/comments.

1. Is Celia doing okay ~ we have not seen or heard from her in a while and now you are posting updates on Deirdre for her. Is there a reason she's not posting? I hope all is okay with her.

2. The second film is really dark and I am really unable to see the results ~ which I hope are positive.

~A