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stephanieC
10-22-2007, 02:23 PM
Hi, I am relatively new to this forum and I have some questions about vertebral stapling. My 9 year old has scoliosis. A single c curve at 26 degrees. I was full on going with the spine cor brace and will keep my appointment with the orthopedist for this Monday. But, I can't stop thinking about the vertebral stapling procedure. Anyone reading this have some long term success? Or a non success story? Any thoughts, opinions or advice would be greatly appreciated. I contacted Shriners @Philly and spoke with someone there. I am waiting to hear back from Janet Cerrone at Shriners. I love the idea of doing the procedure and not having to put my daughter through the difficulties the 6 or 7 years in a brace will bring her. However, it does seem like a significant surgery and recovery. Any insight?? Thanks!!
Stephanie

mariaf
10-22-2007, 03:24 PM
Hi Stephanie,

The best place to get insight from parents who have been there is on the vertebral stapling support sight - here's the link:

http://health.groups.yahoo.com/group/staplingsupport/

There are about 30 parents - many whose children have gone through the stapling and others who are considering it - I'm sure they can answer many of your questions.

If you have any trouble loggin on, you can always e-mail me.

Good luck!

Maria

stephanieC
10-22-2007, 07:59 PM
Maria, thanks, I will check out that site. How has your son David progressed since his stapling? How old is he now? Has his curve gotten better or stabilized? I just feel so sick to my stomach trying to decide which option is best for my daughter. It looks like my second daughter may have a curve as well. I wish somebody could magically tell me what the right choice is. I just can't stop thinking that this stapling option really offers the child a more "normal" adolescence. I am just so torn between the spine cor brace and the vertebral stapling. I will consult with both Docs. and see what sits best with me and my husband.
Stephanie

mariaf
10-23-2007, 06:54 PM
Hi Stephanie,

It's funny, David just had a check up today and Dr. Betz was VERY pleased. He is holding at 32 (he was 40 when they stapled him with quite a bit of rotation) - now he is also MUCH less rotated, looks a lot better cosmetically, etc.

Kids with smaller curves and little or no rotation seem to fair even better. It's a tough choice - I would definitely check out the VS Support Site - this way you can get everyone's perspective, not just mine. If you have any trouble loggin on to the site just e-mail me. You may have to receive an invitation first from me or one of the other moderators but that's no problem.

I think the one consensus you will find among the parents is that none of them regret their decision and would do it again. I personally feel that the stapling will prevent CERTAIN kids from needing fusion later on. My son would most likely have - now Dr. Betz feels very optimistic that we can avoid it.

Good luck.

stephanieC
10-23-2007, 08:33 PM
Hi Maria,

I'm happy that David is doing so well. I have checked out that website for vertebral stapling support. It seems great. Lots of information and very encouraging. I recognize a few names. I will probably want to join and will contact you if I have any difficulty. I have an appointment for a consult on bracing this Monday. Primarily about the spine cor brace. I will keep that appointment. I spoke with Lisa at Dr. Betz's office and will be set up with an appointment for a consult there in the next couple of weeks. Then my husband and I will make the big decision. I feel so blessed that I stumbled onto this forum. It has been so helpful with information and emotion. I don't know why, but it seems easier to get a check on my emotion when I read about others and read the support they are given. I feel like I really need to get on the ball and make a decision. My daughter was first diagnosed in July. Now it's October. Her curve increased from 24 degrees to 26 degrees in two months. I just want to make the right decision!! Thanks for your replys. They are very helpful!!
Stephanie

mariaf
10-23-2007, 08:42 PM
Stephanie,

Not sure if I mentioned this before, but if you have any questions about the procedure, the person to ask (besides Dr. Betz of course!) would be Janet Cerrone. She's the PA who works with Betz and has been involved with the stapling since inception. She's a wealth of knowledge and extremely nice. Lots of times parents speak to her first on the phone to see if their child sounds like a candidate, or to ask certain questions, etc.

Good luck!

MATJESNIC
10-23-2007, 09:23 PM
Maria,

I am so happy that David had a great appointment. How often do you go?

mariaf
10-24-2007, 07:28 AM
Hi Melissa,

Thanks! We go every 4-6 months. We are now seeing Dr. Betz since D'Andrea left, and he and I both decided we'd just do the 4 months for now. I really don't mind the trip. We went with the Shriners drivers the last two times and it was totally stress-free. I slept a lot :)

I can't say enough about Dr. Betz - he's so down-to-earth I find it hard to believe he's a surgeon, no less chief of staff!

How's Nicole? I've been following all your posts. Anything new? I assume she's getting better and stronger every day and it sounds like she's looking great too! I'm so glad for your family that this is behind you. You must fell like the weight of the world has been lifted off your shoulders!

Take care,

Maria

stephanieC
10-24-2007, 06:17 PM
Hi Maria,
I am waiting for an e mail from Janet, who is out of the office until Monday the 29th. I have an appointment for November 2nd for a consult with Dr. Ashgar. I have an appointment this Monday with a ped. Ortho out in NY to discuss the spine cor brace. Between these two appointments I guess my husband and I will make a decision. It's moving quickly now and making me a bit nervous. But these decisions do have to be made. Thanks for responding back to me, it means a lot!!
Stephanie

mariaf
10-24-2007, 09:17 PM
Hi Stepanie,

Remind me again, are you from NY? We live in Queens, NY.

Anway, I was just on the phone with a mom tonight whose daughter had the stapling exactly a week ago with Dr. Ashgar. She's home and doing well. Everyone LOVES Dr. Ashgar (if you check the VS site you'll see this is true). In addition to being a gifted surgeon, he really has a way with the kids. We met him back in January and David and I both loved him.

Not an easy decision you are facing though - good luck and I'm here if you want to chat.

Best,

Maria

stephanieC
10-25-2007, 08:18 AM
Hi Maria,

I live in New Jersey now, on the Jersey shore. I lived in Queens for some time when I was in college. I lived in Jamaica, then Flushing.

I have been to the VS support site every day. I think I am waiting until after my consult with Dr. Ashgar next Friday to join. I don't really know why. I have been so scattered this week and not sleeping well. I just keep running down all the different outcomes in my mind. I am actually looking forward to making the decision. At this time, I am leaning towards the stapling. I really want to hear what the doctor out on Long Island is going to say on Monday. Then I will meet with Dr. Ashgar and see what he has to say next Friday. I hope Michela is a candidate. I probably said this already but she is 9 years old. Cobb angle was 24 degrees in July and 26 degrees in September. I think the Dr. will take another x ray Monday. Also, my 7 year old daughter is having her curve x rayed for the first time on Monday. I hope it is VERY small. Two decisions at the same time is too overwhelming, especially since I don't feel to confident about anything right now.

Anyway, I see I'm going on a bit. Nervous I guess. It is therapeutic to get these thoughts out there though. So again Maria, thank you!

stephanieC
10-25-2007, 08:25 AM
Maria,
I was just looking back over our posts. I think it's great that David is holding at 32. In addition to that you said his rotation is much better, which, cosmetically, looks better. Can the stapling correct the rotation without correcting the curve? Does the curve and rotation happen separately? I guess what I mean is can you have one without the other? I don't remember anyone talking about Michela's rotation?

I was just wondering, do either of your older children have scoliosis?


Stephanie

mariaf
10-25-2007, 08:34 AM
Hi Stephanie,

I'm curious what doctor you are seeing on LI on Monday - I ask because David used to see someone in Uniondale - and since LI is quite a ride from the Jersey shore, I guess this doctor you are seeing was highly recommended. So was mine - but someone said recently about Shriners that they are "just far ahead of everyone else". I agree.

Also, why is your other daughter being x-rayed? Does she have a curve or is this just a precaution?

Thanks.

Maria

mariaf
10-25-2007, 08:38 AM
Stephanie,

I just saw your other post (it might be easier for us to email - my address is below).

Anyway, the stapling apparently CAN correct some degree of rotation since it did with David. Dr. Betz even compared how the vertebrae looked preop and now and there is DEFINITELY improvement - I can also see it with the naked eye - and his rib hump is MUCH smaller than preop.

You asked can the stapling correct rotation without correcting the curve? I don't think that would happen - if it corrected the rotation then it would most likely have corrected the curve (hope that makes sense). Some kids, especially those with curves in the 20's, have little or no rotation so perhaps that's why nobody mentioned it.

No, my two older kids don't have scoliosis.

Good luck,

Maria

stephanieC
10-25-2007, 08:47 AM
Hi Maria,

My second daughter, Shannon, is being x rayed because our pediatrician and I can see a curve. It seems small and almost insignificant, but with her sisters diagnosis we figured it's best to get a baseline and see where we are at.

The doctor I am seeing is out in Stony Brook. Her name is Dr. Susan Haralabatos. She and one of the other doctors in that group( Dr. Carrion) are pediatric orthopedists who use the spine cor brace. I found there practice on the spine corporation website. I had also spoke with the orthotists office manager out there who works with these Doctors and was happy with the conversation I had with her. She answered all my questions and I believe the orthotist is competent. It seems with the spine cor brace the orthotist who fits and adjusts the brace is equally as important as the prescribing doctor. So for me right now, it is Spine Cor vs. Vertebral stapling. However, I will ask Dr. Haralabatos her opinion of vertebral stapling as well.

Stephanie

stephanieC
10-25-2007, 09:09 AM
Maria, I sent you an e mail. Let me know if you received it. Thanks!! Stephanie

mariaf
10-25-2007, 10:25 AM
Not yet - but I'll keep checking!

mariaf
10-25-2007, 10:37 AM
Stephanie,

Can you please resend your e-mail?. I should have received it by now but nothing has come through.

Thanks.

Maria

jillw
10-25-2007, 01:46 PM
Hi Stephanie, We had corresponded in your "new and seeking info" post (my daughter just started spinecor) and I am also following the vertebral stapling board on Yahoo that Maria has referred to (my daughter isn't a candidate for it yet, but it is something I would seriously consider if she progresses).

Anyway, I just wanted to let you know that you may be right that you will feel better when a decision is made. For 6 weeks I was agonizing over what to do and staying up all night trying to read whatever research was out there and what was on the boards, etc. My daughter has been in Spinecor for a week - I don't know if it will work, i don't know if we've made the right decision, I still spend a lot of time trying to research what's out there and figure out if there is anything else we can do to help, i still spend time reading about others experiences and hoping to hear great outcomes (with both spinecor and VBS) and feeling sad for the children when there are setbacks. HOWEVER, once we made our first decision and had her braced last week, I feel like we're starting to get back on with our lives and are more in the mode of dealing with our new reality. I even noticed that today was a beautiful fall day here. (and then I feel guilty because I'm enjoying myself while my daughter is stuck with the brace all day...but I digress).

The point I am trying to make is that you should hang in there!!!! Hopefully you will get great info from both doctors and when you do make a decision or come up with a plan, you might start to feel a little less anxious. Good luck with your decision! I'm glad that your daughters curves are such that both VBS and spinecor could be a good option for her. Let us know how things go and how the xrays turn out for your younger daughter.

p.s. Maria, I'm so glad to hear that David's curves are holding!!!!

Jill

stephanieC
10-26-2007, 09:53 PM
Hi Jill,

Sorry it took so long for my reply. Sometimes life gets in the way of such things. :)

Thank you for posting. You and I are at similar places right now. I guess I am just a month or so behind you. :o I hope Katie is adjusting well. Why do you say that she isn't a candidate for stapling? I see her curves are relatively mild (as if there is such a thing as "mild" when it's our babies) Is that what keeps her from being a candidate? We might have lots to talk about as the next few months unfold. Let's hope it's lots of smiles. Who is your Doc and when is your first follow up?

What's Katie going to be for Halloween? I got an Indian, a pop rock star, and a 3 year old who won't put on a costume but still says he is going trick or treating. lol!!! How do they learn about these things so young? He totally knows there is a boat load of candy in his future.

Stephanie

stephanieC
10-27-2007, 08:29 AM
Hi Maria,

Just letting you know, I sent you an e mail. Just in case I'm in the junk pile. :D

Stephanie

jillw
10-27-2007, 02:28 PM
Stephanie, Yes, I have thought that we are in a similar stage of our scoli "journey".

Katie isn't a candidate for VBS now because they generally won't do it unless the curve is at least 25 degrees (as Janet Cerrone pointed out, it is major surgery). So if Katie progresses, then she could potentially be a candidate. Which is OK by me because I would want to be sure that her scoliosis is progressive before we put her through surgery (although unlikely I still have hopes that she's one of the minority that won't progress).

I've been told to wait to see if it progresses before bracing even, but decided to try spinecor in the interim instead.

Katie is going to be Hermione Granger and her younger brother is going to be Harry Potter...the first year that we've had a matching theme! (I suppose I should dress up as Professor McGonagell)

Celia
10-27-2007, 02:48 PM
Have you read the latest on the character Dumbledore being gay! :eek: What is that all about?????! The man is in his eighties and has a beard down to his knees ! The only thing I can imagine him doing is preparing a glass of warm milk and a bun before bed.

stephanieC
10-27-2007, 05:05 PM
Jill,

I do get afraid when I think about surgery for Michela. I 'm not even sure she is a candidate for VBS yet. She was 24 degrees in July and 26 in Sept. so we''ll see what this weeks x ray shows. I just want to get these last two consults and make the decision. Spine cor or VBS. I am leaning toward VBS. The results seem very encouraging and it's a wonderful thing for a child not to have to deal with a brace. We take such things for granted ordinarily. However, if Michela needs to be braced we will try the spine cor first. My mind is pretty well made up at this point, but I am still going to see what these last two docs. have to say. (one spine cor, one VBS)

Great costume choices!!

Stephanie

jillw
10-27-2007, 07:41 PM
Stephanie, I'm glad the two appointments are coming up relatively soon - you will feel better when you have made a decision and get busy doing it.(and I hope its a smashing success!)

Celia, :D I had heard that about Dumbledore...you made me laugh! I have to agree that I didn't think about the sexuality of any of the teachers one way or the other and I suspect most of the kids didn't either (it's almost as bad as picturing your parents, um, you know!)

stephanieC
11-04-2007, 05:47 PM
Hi to all,

Well my husband and I met with our 2nd and 3rd opinion, have read everything in sight and have decided to go with the vertebral stapling surgery. While it is major surgery, we feel it is the best decision for Michela. We met with Dr. Asghar at Shriners hospital in Philadelphia, very kind and thoughtful man. He took the time to explain our options and risks involved. Scoliosis is a frustrating situation as there are so many differing opinions and options. Each case really is different. Michela is no doubt progressing and is looking at an increasing spinal curve. For us, it makes sense to do the stapling. The procedure has shown to be very successful and even seems to show correction, especially if you do the procedure before 30 degrees. I know the compliance for a brace, even the spine cor, would be low. Thinking about a 6 or 7 year ongoing battle with my daughter seems harrowing. We gave a lot of thought to her social and emotional well being as well as her physical discomfort. I am feeling a bit anxious but my stomach seems settled and I can sleep at night. This is how I know I made the right decision for Michela.

Thank you to all who have offered your support. It has been very much appreciated. I wish you and your children the very best outcome!!! I will keep you posted as to Michela's surgery and outcome. It helps us all to know of those who have gone before.

Best, Stephanie

MATJESNIC
11-04-2007, 06:08 PM
Stephanie,

I am very happy you have made a decision. I wish your family success with the stapling and a speedy recovery. Please keep us posted.

jillw
11-04-2007, 06:23 PM
Stephanie, I'm glad that you have gotten the consultations done and were able to come up with a treatment plan. Hopefully you feel relieved to have made a decision and I'm glad you feel good about the decision. Please keep us all updated when you get a surgery date and how things go. We'll be thinking of you and hoping for the best! (have you started to post on the yahoo VBS boards yet?)

stephanieC
11-05-2007, 06:38 PM
Melissa,
thank you for your well wishes. I will continue to read and post in the forum. It is very helpful. I know from reading the posts that your daughter, Nicole, recently had surgery. How is she feeling? Has she gone back to school? I hope she is feeling more herself now and that your life is returning to a "normal" place.


Jill,


I have thought of you and your daughter much this last week. How is she settling in with the spine cor? I hope she is finding it more comfortable. Thank you for thinking of Michela. I have just started to post on the yahoo stapling support group. Lots of great people there too. It is heartwarming to see the way people can really band together and support eachother!

Stephanie

MATJESNIC
11-05-2007, 08:50 PM
Hi Stephanie,

Thanks for asking about Nicole. She is almost 8 weeks post-op and says she feels like herself again. She is going to school full time (has been for over two weeks) and is all caught up. We go back for another check-up next week.

You are very fortunate to have Amanda and Maria as part of your support team. I have met both of them in person and they are wonderful. Please keep in touch.

mariaf
11-05-2007, 08:58 PM
Thanks, Melissa.

That is really amazing about Nicole. I know it was rough at the beginning but it sounds like at about 6-8 weeks post op she was back to her old self. Considering what she'd been through that's amazing. Time goes so quickly - she'll be six months post op before you know it! Then a year!

I can't believe this March will be 4 YEARS since David's surgery!

I'm so glad it's all behind you now.

Maria