vertebral stapling

[stephanieC]

Maria, I sent you an e mail. Let me know if you received it. Thanks!! Stephanie

[mariaf]

Not yet - but I'll keep checking!

[mariaf]

Stephanie,

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

Thanks.

Maria

[jillw]

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]

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. 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]

Hi Maria,

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

Stephanie

[jillw]

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]

Have you read the latest on the character Dumbledore being gay! 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]

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]

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, 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]

after much research and consideration a decision has been made

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]

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]

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]

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]

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.