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Pooka1
08-24-2009, 09:49 PM
Well my brave little Willow is in surgery territory now. She will be fused in early October. Probably the same levels as Savannah, T4 - L1. Her lumbar straightened almost completely upon bending so it's still flexible.

I told the surgeon Willow had stopped wearing the brace in April and that I didn't push back at all on that decision for several reasons I have stated here.

He asked her why she stopped wearing it and she said it stopped fitting correctly. I can only assume this is when her curve started to move again. We know the curve has moved in brace (8* in one six-month period) so that's why I think it started moving again at this time. She was wearing it daily until then.

Of course it could have started moving again because she stopped wearing the brace. We will never know but I still think it was a rational decision on her part. Had there been a better chance of success or a better picture from the literature I would have pushed back.

He assured both Willow and myself that there was never more than a small chance of the brace working. He didn't elaborate but I can guess why from literature and especially as it concerns bracing in general for Marfans related scoliosis (she hasn't been diagnosed with Marfans but she has a hypermobility diagnosis), among other considerations.

Both she and I had been prepared for this since the time when she still progressed from 32* to 40* despite wearing the brace as directly. If I had any hope before that episode, most of it vanished after. It seems reasonable to suggest the brace may have delayed the surgery which in this case is not optimal... she starts high school tomorrow.

But speaking of school, I am not on the ledge about that as much as with Savannah now that I saw her recovery rate. That of course is no guarantee Willow will be back in school at the same time but it gives me hope. She'll be okay any road.

LindaRacine
08-24-2009, 09:53 PM
Hi SHaron...

Sorry to hear this. I hope the surgery and recovery go as smoothly as it did with Savannah.

Regards,
Linda

Pooka1
08-24-2009, 09:59 PM
Thanks so much, Linda.

I appreciate the thought. I can at least have a credible hope her recovery will be as smooth.

It's amazing. She cried her eyes out when Savannah needed surgery but was okay for her own case. They are so close... it will be good to have Savannah help her through recovery... she understands.

She did say half of her was glad to get be able to look better now that she started rotating a bit. It is nowhere near as rotated as Savannah but she sees it of course.

sharon

mariaf
08-24-2009, 10:25 PM
Hi Sharon,

I just want to echo Linda's sentiments - I'm sorry to hear this news but hopeful that Willow will come through the surgery as well as Savannah did.

Keep us posted.

hope404
08-24-2009, 11:37 PM
Pooka1,

I didn't know whether to be sad or relieved since I know the "watching and waiting" wasn't something you enjoyed. I feel very hopeful Willow will fare as well as Savannah...

I was shocked and saddened when I read your news tonight(Monday)....but Scoliosis is so famous for bringing bad news with it.....

Sometimes I wish my daughter could just "get it over with" so to speak.

I'm glad Willow will have her sister to help her through it.....and you of course..

All the best,
HOPE

leahdragonfly
08-24-2009, 11:45 PM
Hi Sharon,

Sorry to hear that Willow needs surgery after all. At least this time you and she will have a very good idea what to expect post-op and recovery, which I imagine would help. And I know that although you were hoping to avoid this, it is not completely unexpected. Curious, how is Savannah taking the news?

I support you in your decisions regarding Willow and her brace. You have nothing to regret. Really, Willow should be commended for wearing the brace as long as she did with only a small hope it would prevent surgery. I think it would seem extremely unjust to a teenager to struggle through wearing a brace and then be told they needed surgery anyway. I am sure she will do well with surgery and recovery, but I hope you will not leave us here after that! Please keep us posted.

Take care,

titaniumed
08-25-2009, 12:40 AM
Sharon

Ohh, this news makes it so difficult to post comedy. But then again, its no surprise....

Poor things, I remember how terrified I was back when I was a kid and the Docs were talking surgery. Its way worse doing these things as a child than as an adult. I don't normally post to parents due to my memories, those were a period of major change for me. I had many difficult decisions to make on my own.

I know that Willow will be just fine. She has one heck of a support team with the brave and experienced Savannah who paved the way, and of course, yours truly who deserves the NSF parent researcher of the year award.

I'm sure that Willows mind is quite preoccupied right now..............

Ed

laurieg6
08-25-2009, 04:23 AM
Sharon,

I'm so sorry to hear that Willow needs surgery, although I know she will be fine and have a great recovery. I can't imagine going through this with a 2nd child but you seem so strong and your daughters are very lucky to have you there for them.

You have my best wishes and any support possible on this forum. It's times like this that I wish I was closer to everyone and could meet to offer real support like it seems a lot of people do on the East Coast.

Pooka1
08-25-2009, 06:08 AM
Hi Sharon,

I just want to echo Linda's sentiments - I'm sorry to hear this news but hopeful that Willow will come through the surgery as well as Savannah did.

Keep us posted.

Thanks so much Maria.

I'm glad we have a surgical date just about a month away and not further.

sharon

Pooka1
08-25-2009, 06:15 AM
Pooka1,

I didn't know whether to be sad or relieved since I know the "watching and waiting" wasn't something you enjoyed. I feel very hopeful Willow will fare as well as Savannah...

I was shocked and saddened when I read your news tonight(Monday)....but Scoliosis is so famous for bringing bad news with it.....

Sometimes I wish my daughter could just "get it over with" so to speak.

I'm glad Willow will have her sister to help her through it.....and you of course..

All the best,
HOPE

Very kind of you to say, Hope.

You're right it is mixed. I could not sleep last night at all but curiously I feel okay this morning. We are just lucky they can fix her. And if something goes wrong they can revise it. And if she has problems way down the road then they will be able to fix that even better. It could be worse.

If they ever develop Marfans I will be very grateful for the scoliosis as that diagnosis would have literally saved their lives.

sharon

Pooka1
08-25-2009, 06:30 AM
Hi Sharon,

Sorry to hear that Willow needs surgery after all. At least this time you and she will have a very good idea what to expect post-op and recovery, which I imagine would help. And I know that although you were hoping to avoid this, it is not completely unexpected. Curious, how is Savannah taking the news?

Savannah, by chance, was with us on this visit and that was very good. They were able to talk amongst themselves. I didn't belong in that. Neither girl seemed too shaken.

Previously, the worse was ~1.5 years ago when they were both in the exam room and Savannah was told she needed fusion. Savaanah never broke but Willow could NOT gather herself for the rest of that consult. She cried for at least 10 minutes, unable to stop while I'm trying to figure out what to ask the surgeon at that point. She only was able to stop a minutes after we left the office and were driving in the van. I have never seen her lose it like that before or since. They are very close.


I support you in your decisions regarding Willow and her brace. You have nothing to regret. Really, Willow should be commended for wearing the brace as long as she did with only a small hope it would prevent surgery. I think it would seem extremely unjust to a teenager to struggle through wearing a brace and then be told they needed surgery anyway. I am sure she will do well with surgery and recovery, but I hope you will not leave us here after that! Please keep us posted.

I knew you would dig it, Gayle. :) I was not aware of the state of the science when Willow got the brace. The surgeon said he thought it worth at least a try thought there was never more than a small chance it would work for her. He said he never would have given her a 23 hr/day brace because of that.

Still, my heart sank when she was told she needs fusion coincident with discontinuing the brace. I was worried she would think she made a horrible decision. I realize that is an emotional response rather than an intellectual one but it still happened. But there is some reason that brace stopped fitting. And we know she moved more than 1* a month in brace and that was immediately after a 6 month period of stability. That may have been when I started questioning the brace in my mind.

Moving forward. Always.

sharon

Pooka1
08-25-2009, 06:33 AM
Sharon

Ohh, this news makes it so difficult to post comedy. But then again, its no surprise....

Poor things, I remember how terrified I was back when I was a kid and the Docs were talking surgery. Its way worse doing these things as a child than as an adult. I don't normally post to parents due to my memories, those were a period of major change for me. I had many difficult decisions to make on my own.

I know that Willow will be just fine. She has one heck of a support team with the brave and experienced Savannah who paved the way, and of course, yours truly who deserves the NSF parent researcher of the year award.

I'm sure that Willows mind is quite preoccupied right now..............

Ed

Ti Ed, I can always count on you to dig stuff. :)

Thanks for your kind words but thee are others here who have done much more reading in this area than I. I have merely made a small dent, hopefully enough to have made the right decisions along the way.

sharon

Pooka1
08-25-2009, 06:35 AM
Sharon,

I'm so sorry to hear that Willow needs surgery, although I know she will be fine and have a great recovery. I can't imagine going through this with a 2nd child but you seem so strong and your daughters are very lucky to have you there for them.

You have my best wishes and any support possible on this forum. It's times like this that I wish I was closer to everyone and could meet to offer real support like it seems a lot of people do on the East Coast.

Very kind of you to say, Laurie. I appreciate it.

I feel better prepared this time though there are no guarantees it will go the same.

And I have gotten far more out of this forum than I have contributed. It's made a difference to me. Thanks to all.

sharon

WNCmom
08-25-2009, 07:59 AM
Sharon--

It seems everyone here has already said it all, but I want to chime in. I know you were waiting for this and I think you and your daughters are prepared--if we ever really can be for such surgery. Although it does interfere with the beginning of high school, no doubt it is better (for that reason, as well as others) to do it now than later in the year.

We'll be here for you through the surgery, as you have been for us. As you know, it won't be long.

Mary Ellen

jillw
08-25-2009, 03:04 PM
Sharon, I wish there had been no more progression once she stopped wearing the brace - I'm sorry to hear it's not the case. The fact that Willow has had a say in her treatment all along must make this outcome more bearable and less frightening. I'm glad the surgery is fairly soon so she won't have long to agonize and am very glad that Savannah's recovery was so smooth (a good role model). Hopefully she'll also have a quick, seamless recovery. Good luck to Willow!

concerned dad
08-25-2009, 04:28 PM
Wow! Not sure what to say.

I guess all of us parents know that it is a possibility that surgery will be required.

It's just scarry when you actually see it happen to someone you know and chat with on the forum.

My concern for your daughter is both sincere but also a bit self-centered as we have our follow-up appointment tomorrow and have anxiety about what we may be told.

Pooka1
08-25-2009, 06:24 PM
Sharon--

It seems everyone here has already said it all, but I want to chime in. I know you were waiting for this and I think you and your daughters are prepared--if we ever really can be for such surgery. Although it does interfere with the beginning of high school, no doubt it is better (for that reason, as well as others) to do it now than later in the year.

We'll be here for you through the surgery, as you have been for us. As you know, it won't be long.

Mary Ellen

Thanks so Mary Ellen. I'm glad you are still around and posting.

I have felt an inevitability of Willow's surgery and I had a real fear the bracing would just postpone it into adulthood even if it worked.

I can't prove it has postponed surgery and I can't prove (now) that the brace would not have worked to avoid surgery over her lifetime. I'm just saying all things considered, the type of scoliosis she likely has, I think this is a good outcome for now and in the long term for Willow.

Thanks again.

sharon

Pooka1
08-25-2009, 06:34 PM
Wow! Not sure what to say.

I guess all of us parents know that it is a possibility that surgery will be required.

It's just scary when you actually see it happen to someone you know and chat with on the forum.

My concern for your daughter is both sincere but also a bit self-centered as we have our follow-up appointment tomorrow and have anxiety about what we may be told.

Good luck at the follow-up CD. All cases are different and there is always hope.

Savannah had a very fast-moving curve from day one. Willow's was alternatively stable and progressive both in and out of brace. As Pam says, some curves move when they want. My girls don't seem typical of the testimonials here. I think this conclusion was set way back when their sclera turned bluish as infants. I didn't realize it then but I'm knowledgeable and ready now to handle this.

I'll be thinking of you and you daughter, CD.

Best regards,
sharon

flowerpower
08-25-2009, 07:00 PM
Hi Sharon,

I haven't been on lately, just peek in every now and then...so sorry to hear your other daughter will need surgery also. Hard enough to deal with one surgery, now two. I can well imagine how you feel as we may be facing the same thing in the future, at least you will be better prepared/experienced this time around. I hope Willlow's surgery and recovery will go as smoothly as Savannah's.

Renee

Pooka1
08-25-2009, 07:32 PM
Hi Sharon,

I haven't been on lately, just peek in every now and then...so sorry to hear your other daughter will need surgery also. Hard enough to deal with one surgery, now two. I can well imagine how you feel as we may be facing the same thing in the future, at least you will be better prepared/experienced this time around. I hope Willlow's surgery and recovery will go as smoothly as Savannah's.

Renee

Thanks, Renee.

I know you are in the same boat but your son will hopefully avoid surgery. Most cases do not reach surgical territory.

sharon

Pooka1
08-25-2009, 07:59 PM
Sharon, I wish there had been no more progression once she stopped wearing the brace - I'm sorry to hear it's not the case. The fact that Willow has had a say in her treatment all along must make this outcome more bearable and less frightening. I'm glad the surgery is fairly soon so she won't have long to agonize and am very glad that Savannah's recovery was so smooth (a good role model). Hopefully she'll also have a quick, seamless recovery. Good luck to Willow!

Didn't see this one!

Thanks for your kind thoughts, Jill.

I just hope she gets the quick recovery Savannah had. It helps that Savannah was saying she was glad to have the surgery within a short time of being home. But I think Willow might just assume she will have the same recovery trajectory and you really can't know those things ahead of time.

Thanks again.

sharon

purplepixie
08-26-2009, 06:04 AM
Pooka1 -

I am so sorry to hear about your daughter Willow. While you are graced with knowing how this goes and what to expect, still, I can imagine it is still difficult.
I am glad she got a fast surgery date, and am certain she will have a wonderful and speedy recovery. The fact her sister can truly understand I think and hope will be a great blessing.

I know I have not been around much since we first chatted last month. Been busy preparing for my little ones surgery next month. I am happy to say that because of you and other parents on here I have more confidence going into this. Please know that we are all thinking of you and Willow.

Jules

Pooka1
08-26-2009, 06:19 AM
Jules,

Thanks for the note.

I read your profile... you are on the whirlwind tour of scoliosis I see! That must be hard to digest in so short a time.

For me, my confidence in the surgeon and the no-choice aspect were key things that got me through Savannah's surgery.

For Willow, the hope for the same result Savannah's got will get me through this. Savannah has her life back. I didn't worry about her future as much as I worried about Willow's. Hopefully soon I can stop worrying about Willow's future in that was also.

You and your daughter will get through this too.

Good luck.

babachi
08-27-2009, 09:26 AM
Hi Sharon,
Just wanted to let you know I was thinking about you and Willow.
I ditto Mary Ellen. It's a difficult time, but you are prepared, in good hands and know what you're battling.
You know we're here...
Best of luck
Bethany

Pooka1
08-27-2009, 03:31 PM
Hi Sharon,
Just wanted to let you know I was thinking about you and Willow.
I ditto Mary Ellen. It's a difficult time, but you are prepared, in good hands and know what you're battling.
You know we're here...
Best of luck
Bethany

Thanks, Bethany. It helps having folks here.

I hope Jesse is doing well.

sharon

debbei
08-31-2009, 09:18 PM
Sharon,

I'm so sorry to read this news. It has to be so hard to see your kid go through this--and you, 2x over. At least Willow will have a good role model and moral support in her sister.

I hope that all goes as smoothly for Willow as it did for Savanah.

Pooka1
08-31-2009, 09:32 PM
Hey Debbei,

Thanks for the kind words.

Willow is remarkably upbeat about it. She wants this episode behind her and she wants to look and feel like her sister.

If Willow gets the same result I promise I can die happy.

Just have to get through one more... that's what I keep telling myself.

I'm taking Mary Ellen's advice more seriously this time... eat well, drink enough liquids, etc.. I can't do much about the 'round the clock stuff but I can try to sleep better in-between getting up. I think I won't have so much of a constant knot in my stomach over wondering about the unknown this time. At least I hope so though it may be inevitable.

What will ultimately get me through again is the confidence in our surgeon which knows no bounds. :)

Thanks again,
sharon