spinecor

[gerbo]

well said, mum of Miles!

[stephanieC]

Adele and Melissa,

Both of your posts made me choke up. You expressed openly what we are all feeling on some level. Melissa, you were right on when you said yes, it could be worse, but right now, what we are all facing is our worse. What makes it so scary is in our hearts and the root of our deepest fear, is that we know it can get worse and we pray all the time that it won't!!

Melissa, I never even realized that Nicole was still going thru so much. I knew her fusion was a success and her recovery was going well. I never realized the length of recovery time for fusion patients. How it affects her daily life every day right now. So much to go thru for such a young girl!! I will pray for her that she remain resilient and that her recovery continues to go well.

Hugs,
Stephanie

[MATJESNIC]

Stephanie,

Thanks for your kind words. I am relieved that the actual surgery is over. But that was always just part of the worry. Now we have to wait until at least 6 months until the fusion takes place. But it's not until a full year that most restrictions are lifted. So in a lot of ways, it is a long recovery. I am hoping that after one year, I will start to relax and try to forget about it as much as possible. Nicole and I keep track by days, weeks, and months. Today I wished her a happy 80 days post-op. After one year, I want us to get back to our normal lives as much as possible.

[milesmom]

Melissa

This is an amazing, compelling and heartwrenching story. I hope that all goes well as the days pass. I cant even speak on fusion ( experience-wise) but can relate in the way that this darned scoliosis has us doing just as you say...counting days, weeks, months...I gauge alot of my time according to our 4 month check ups. The stress-y feelings start weeks ahead of the appointment..then who knows after them?...it all depends on the news. I either exhale a bit, or times when its not been so great..start the whole worry/research/ cycle all over.
Your account of her missing the Bat-Mitzvah..the disappointment, grabbed my heart. I noted her age, and I have a 12 yr old girl myself. I am often oddly grateful that if it had to happen to any one of my kids, Miles is young, and oblivious to the comments, the not being allowed to do certain things, even the fact that his brace is not the norm for everyone...BUT had it been my 12 yr old girl, or my 10 yr. old son I just cant imagine how it must feel to have to keep your chin up and ease her thru disappointments like that. Its hard enough being an adolecent! As I said in my prior post though, there will be struggles thruought, but it will shape her into such an accepting, resilliant, adaptable, thoughtful adult.
Best to you both--have happy holidays and absolutley the best of times this New Year.

[cherylplinder]

I sent a PM to Ruth yesterday or today, telling her that I was going through my usual previsit panic. I look closer, I observe more, and work myself into a panic before it's all over, sometimes.
Rachel's alignment is off, more than before, I noticed it looking at her a couple of days ago. I quit looking that close all the time. Good for her! I used to drive her crazy! Now I only do it at appt time. I may stop that if I have enough self control. What good does it do me? None! It makes me panic.

Ruth helped me, she said she thought something was off before the last appt, but it wasn't . I am going to run with that . Otherwise, I will make myself nuts before Thursday.

I really trust God , but I really want to avoid surgery! LOL! I know you all understand. Melissa, you probably better than anyone!

I am so grateful to have so many successful surgical outcomes to look at. It helps every time I contemplate that!

Thank you all for being there in a way no one else could. I love you.

I treasure you.

[milesmom]

previsit panic

Oh how I can relate.
As in my last post... I get so agitated, knot in the stomach ( we're going soon too, 17th)..I try not to be snappy with the rest of my family, but admit that I sometimes do. ( I mean, really..when I have the other two bickering "she touched my stuff...but he moved my ipod.." I want to yell..HELLOO!!!!! Lets all focus on what happens at Miles' appointment...but no, thats not fair, I know. Not for the kids anyway.
My husband stays relatively non-verbal over it. Not to say that he doesnt worry, but he doesnt get outwardly worked up as I do. I guess one of us needs to be more level.
So many facets to this...the appointments, the family, keeping up with everything.
Must say, I join you in the knotted stomach, pre-visit jitters...
Best of luck on your appt.

[WNCmom]

checking the back

Just a few days ago my son said to me, "Mom, you're looking at my back again. Stop looking at it." I hadn't realized I was doing it so much or that it made him feel like an object. Hard not to do...and we are three months away from the next check-up!

Hang in there, Cheryl. We're all rooting for you and Rachael.

Mary Ellen

[cherylplinder]

Thanks!

Cheryl

[rtremb]

This is a presentation of the Orthobiom system developed by Dr. Rivard.
http://www.mediaprosf.com/vbllc/march12.htm
Go down to the presentation by Dr. Rivard. Interesting.
Cheryl

Did anyone else watch the video of Dr. Rivard that Cheryl posted? There is also a video of the CEO of Biorthex Inc. talking on the same subject.

I am wondering what everyone thinks about this new treatment method. It is going to clinical trial now which I think is pretty exciting.

Ruth

P.S. There is a really big storm going through Ontario and Quebec tonight and all day tomorrow -- so travel on the roads to Montreal will be dangerous - please take care. Flights might be delayed too. Don't know which day you are going Cheryl .....

[MATJESNIC]

Stephanie,

Just saw that I had spelled your name with an "a" on the end. A typo that I just fixed.

Cheryl,

Yes, I know exactly how you feel. I prayed to God all the time to fix Nicole's back. When we were told we needed surgery I decided that the plan I wanted for Nicole's back was not the plan we were going to get. Her back was going to be "fixed" but in a different way than we wanted.

Please have a very safe trip. I hope you all get what you want out of this appt. It really is out of your hands. You are doing the very best you can. Nobody could do any better. The best of luck to you all.

Miles Mom,

You are right. This is a hard age. I am glad we only had this for a few years. She was diagnosed in 6th grade, wore the spinecor and had surgery in 8th. I am hoping that in a few months she will really start to put this all behind her. Right now the biggest void in her life is not being able to dance with her friends. The biggest challenge will be when she realizes her flexibility is not the same.

Do you all watch Extreme Makeover Home Edition? I didn't see the beginning, but the children were all being sent to CHOP for their illness. That is one area where Nicole has been very excited and positive. She loves Dr. Dormans and CHOP and feels so blessed that we live close by to an amazing hospital. We would like to take our 1-year bichon to visit children there. We just got the paperwork and it involves some training and certification. So we can't do it yet. But I am happy that Nicole wants to help others. She really is handling this well. I need to follow her lead.

Have a wonderful day everyone.

[Snoopy]

Stephanie, you told Melissa you didn't realize there was so much involved in recovery. Trust me, there's a lot and it tends to last for a full year and without people like those on this forum sharing their experiences, we'd never be prepared.

When my daughter went back for her one year post-op appointment, she asked her surgeon if she could go hunting. He told her NO, not until she was one year post-op. Hunting season was two weeks before her anniversary date. She didn't go.

At about one month and again at five months post-op we ran into other issues. She had to miss out on several field trips. The one at five months, was a trip to an amusement park which she had earned--it was a trip for kids on the honor roll, which she managed to accomplish even without tutoring after surgery. Times like these are very hard.

Over time, we tend to think about our kids' backs less and less. I was writing something on the calendar the other day and for some reason looked at the 7th. I asked Jamie if she realized she will be 3 years post-op on Friday and she simply said, "Oh, yeah. I guess that is the 7th, huh?"

It is a long recovery, but well worth it to see Jamie hunting, swimming, driving, working and doing everything she wants to do without worrying about her back.

Mary Lou

[stephanieC]

Mary Lou,

How wonderful for you and your daughter to be reaching three years post fusion. Congratulations!! How does her back feel now? I hope all in her life has returned to normal and she is happy!!(normal and happy at 16?? lol)

It is good to see that you are able to "forget" about her back now. That the anniversary date could approach without your acute awareness of it. Good to see that scoliosis can become a thing of the past. At least in some part.

I am very scared of fusion surgery and I hope we never face that mountain. However, reading the real stories from people who have gone through it is very helpful. I read a story about a young girl who had the fusion surgery and was able to get back to dancing full time again. (she danced five days a week before her surgery) It is comforting to read how these children who progress and have fusion surgery do go on to lead normal, good lives. It is the length of recovery that I was unaware of. I knew the surgery itself was harrowing but the recovery time is frightening as well.

Melissa,

No need to worry about spelling. Actually it made me laugh because back in college, I had a boyfriend from Spain, he called me Estephania, so when I saw that, it made me think of him!! Good memories!! lol

Stephanie

[stephanieC]

Ruth and Cheryl,

I watched Dr Rivard's presentation on the orthobiom system. I also watched a few other presentations. Very Interesting!! It is amazing how these Dr's take their ideas and put them into practice. I think Dr Rivard is doing excellent work. The future for children diagnosed with scoliosis is looking better.

I find it curious though that in the initial statement by one of the speakers, not Dr Rivard, he said this was currently the only non fusion surgery being done for scoliosis. What about VBS?? Sometimes I wonder if doctors follow what other doctors are doing.

Think about how many children are diagnosed with scoliosis and see their local ortho doc, only to be told that the hard braces are their only option. Don't these ortho doctors follow what is going on in there field?? Frustrating!! There are so many other options that are not even "new" anymore, like spine cor and VBS, at least let the parents know there is something else out there to consider! IMHO, I find it horrible that most ortho docs do not even know about spine cor or VBS. They never even mention these to parents as something to consider or research. Many parents simply trust there local ortho because they have never heard of these other options, and they trust that the doctor would certainly tell them if there were other viable options, right??

God Bless the Doctors who continue to push the envelope and find better ways!!

Stephanie

[mariaf]

I choked up while reading Milesmom's post so I can't really remember what I was going to say... I think it was along the lines that we all try to make the best decisions given the information we're presented with. Erica's story is amazing and I think Maria's David is a success as far as I can tell given that he was diagnosed at such a young age and has avoided repeated surgeries for so many years and when I compare this with other children with early onset scoliosis who have repeated growth rod surgeries - there is no comparison! So YES, I do see the successes!

Celia,

You also did an amazing job of avoiding repeated surgeries for Deirdre given her initial early diagnosis. I would definitely call her a success story too!

While it could not have been an easy thing, I am amazed at the results that casting has gotten in several cases that I've heard about.

I was just thinking how there are the type of folks who are very laid back and pretty much accept what they are told; and then there are those of us who are a bit more fiesty and determined (we may also tend to be argumentative when we feel it's necessary - LOL!)......but maybe, just maybe, it's that type of personality who will also refuse to blindly accept options that do not appeal to them, but will go to the ends of the earth to find what they feel is a better treatment for their child - be it casting, stapling, Spinecor, etc.

Just a thought

[amandap]

This is amazing,

I'm offline for 2 1/2 days and come back to read wonderful and very heart warming posts from various people.

Adele ~ your post brought me to tears because you just completely said what I and most everyone here feels.

Whatever anyone chooses as a treatment option for their child I hope and pray for success ~ I know that there is not one miracle treatment for everyone and we all toss and turn at night wondering if we made the right choices for our child and how our chioces will impact them long term. I just hope and pray everyday that whatever road we do take is the best one.

Hugs to all ~ A