Nicole's 6-month post op at CHOP

[MATJESNIC]

Hi Everyone,

The good news is that Dr. Dormans said her x-rays, her back, and her scar look great. Her waist and shoulders are even. Her left shoulder blade still protrudes a bit and we knew that would be the case for life. She is 5'7" exactly and is 120 lbs, gained about 10 since surgery. Her risser is a 5. She is done growing.

She can ride the bus, walk in the halls, carry 15-20 lbs, bike, swim, take gym, even dance...................and here is the disappointing news...... she still shouldn't twist or do much bending. She can take tap and ballet. But she can't twist and bend.

We asked about water rides and amusement rides for later on down the road and he was so vague and yet so conservative. In other words, be careful. Use common sense. I felt as though he is never going to actually say, "Yes, you are free to go on any ride and do anything." Maybe he is protecting himself. He said she will always have to be extra careful because anyone can hurt their backs doing those things and her back is more vulnerable, or something like that.

I asked about the bone. It was her bone and also "bone-in-a-bag." My name for it, not his.

There is some fusion there, but with all my 35 questions, I didn't ask if fusion was complete.

Two more disappointments. One, today felt very rushed and he couldn't stay to answer all 35 questions. We had to finish with the orthopedic fellow who we always see with him. Two, Nicole is very disappointed that her curves are in their twenties. When you go through something so major as that, you want to have curves lower than that. It's like dieting for a week and losing one ounce.

Any feedback on anything I said would be appreciated. I am happy that she will start dancing, but obviously she can't do everything in dance. Do you think she will be allowed to bend and twist at one year? I am happy she will take the bus, hold her own binders and walk in the halls.

Oh, she can use the treadmill, the eliptical and the stationary bike.

[Susie*Bee]

Hooray! (for the most part...)

That's great that all is going well and Nicole is progressing. And that she's gained back some weight-- although at 5'7" that's still really slender! And it's great that she can now do all those activities you listed! Hooray!

I also know that must be so discouraging for you both that she wasn't released to do more. I always hurt way more for my girls over their disappointments/discouragements than I would have for myself in similar situations. A mother's plight, although lovingly taken on-- so I really feel for you. It seems like there's such a wide variance in restrictions! Each doctor is different. Wish they could get together and talk it over! (Yeah, I realize every case is different too...) From what you say, Nicole has been such a good sport about it all... I hope she'll be released to do "whatever" after awhile. And hopefully she'll come to accept what is now her disappointment with her degree of correction in time. If you didn't get all your questions answered, can you email them? In the meantime, hang in there-- and keep us posted.

[Carmell]

Melissa,

Honestly, her 6-month appt sounds very positive! It sounds like she's doing very well overall. The "no bending, no twisting" comments make it sound like she isn't fully fused yet. Being skeletally mature means the bones don't heal quite as fast as when the child is still in a rapid growing pattern. Six months post-op seems like an eternity when you have restrictions, but in the grand scheme of things, its not very long. Another six months with minor restrictions is not a bad idea, and won't last forever. It will just seem like forever. I'm sure both of you want a fully fused spine rather than any risk of failed fusion.

Curves measuring in the 20s is not the end of the world either. Again, my lay-mind believes that because she was skeletally mature at the time of surgery, the spine wasn't quite as flexible as a still-growing spine. More than that, I think, is the fact that she is well-balanced with curves in the 20s. If they would have straightened the main curve to less than that, it would likely have made her body unbalanced - her neck and pelvis wouldn't be well aligned, her hips and/or shoulders may have been out of balance, etc. Her curve measurements should be celebrated because she LOOKS so good and is fully functional (with the minor restrictions still).

I agree that maybe sending an email to Dr. Dormans or his assistant wouldn't hurt. Especially if they are questions you need to have answered before her next checkup.

Good luck and remember that you are doing a great job. Nicole is too. She is very obedient and having an ultra-conservative physician is not a bad thing, nor is it the end of the world. Still thinking of you both.

[flowerpower]

Hi Melissa,

Nicole's appt. sounds good overall. I understand your disappointment at no bending or twisting yet, Nicole has a passion for dance and must be so anxious to get back to it. But, like Joe, her fusion is longer than most and it may take a little longer to heal. She will probably get the "go ahead" at 1 yr. post-op. "Bone in a bag"? Is he talking about BMP? If so, that may aid in the bone fusing a little faster.

Rollercoasters....in my very humble opinion it is still too soon. After a year, maybe. Even then, I'd say use a little caution about which rides she goes on.

I'm sorry Nicole is disappointed in the correction of curves. I can understand wanting the numbers to be as low as possible, but getting them down to the 20's isn't "unsuccessful" by any means! In her case (and others) it may have caused other problems, like flatback, etc. Lower #'s does not always equate to "better" correction...

Everything else sounds good, she is ok to start doing more things, so there is progress! It just gets maddening that it takes so long...

Renee

[Sherie]

Hi Melissa

It all sounds great to me. Will she start dancing right away?

I personally prefer to stay on the conservative side. After going through all this, the last thing we want is for them to do too much too soon and jeopardize the progress they've made. Maybe it's easier for me to say that because Sheena could care less about the rides but one year isn't that long, Nicole's already halfway there!

Is she back at her pre-surgery weight? Sheena's still about 6 lbs under but it's not that noticeable (of course now she has an ultra-tiny waist).

Glad to hear your appt. went well, I completely forgot to ask about the fusion too and the sad thing is, that was the main question I wanted to ask (sad).

[MATJESNIC]

We looked at the x-ray together with the orthopedic fellow and he showed us the areas of fusion. So we talked about it, but I didn't ask if fusion was complete and I didn't talk about fusion with Dormans.

Yes, Nicole is starting dance as soon as spring break is over and it starts up again. She will do ballet and tap and do only what she is allowed. She hasn't been to a class since the summer even though the teachers all told her to come back to at least watch. But she didn't want to do that. Now at least she will be doing something.

I was so excited that Nicole walked through the halls with everyone else and carried all of her binders herself. Who could have thought that something like that could ever mean so much!!!!

[Aussiemum]

I can totally relate to how you felt Melissa, I hate how these Doctors rush us. Our was the same, didn't exactly tell me to hurry up at our pre-op appointment but kept looking over at my bit of paper as to how many questions were left! What I did was write out the list of questions but put the MUST have answers at the top, so those ones went first.

That's all great news that everything is going well with Nicole but I guess because she was fused in the Lumbar region that's why the no bending, twisiting still.

Elysia's at 4 weeks now and getting upset that I nag her so to be careful! She can't STAND this being tied down! She was always a very very busy child and sporty so this next year is going to be a big deal. She just wants to be normal again!

I've made a blog about our scoliosis journey and maybe the young kids would enjoy having a look at Elysia's story - it's public so I might as well put it out there.. www.misstfamily.blogspot.com
The Teddy at the beginning is for all our babies!!!!

Cyber hugs
Del

[emma12]

Well, I am glad to hear that things are going pretty well for Nicole. I haven't been on too much lately, and have been trying to catch up here the last few days on everyone. Our 6 month appt. was Feb 28--we were told that she can do pretty much anything that doesn't cause discomfort. She's been released to all activities other than gymnastics (tumbling type) and contact sports (like football). He said she could bend, twist...but wouldn't overly do anything right away, to take things gradually. He also was rather vague about the bending, twisting, but said anything wouldn't hurt her. She's already been in hallways, and carrying binders -- still has textbooks at home for the year, so she won't have to carry those. Also, there is fusion there, but, with all the hardware, he said it is really very difficult to see. She has no pain and is happy to be able to do whatever, although she still is "touchy" in the middle of her back, doesn't want me touching her there. He said rides, water parks, swimming in ocean, diving...all are ok (can't now remember all that I specifically asked him). Funny how all doctors seem to have different opinions on when to do everything---the difference could be in the length of fusion though I guess.

And, although she's been released to these things, I wouldn't put her on a roller coaster now, either. Maybe by summer??? Even watching her bend over in the doctor's office made me "cringe".

So that was our good news, and now for a short summary of the bad, because I think I will actually start a new thread on it. If you recall, she was fused T2-T11 with curves of 61T and 53L, but the dr. thought the lumbar was compensatory--well, it is now still 35ish and he does not think it is where it should be by now. Also, although he did not elaborate on it, he mentioned that there is some rotation going on now, which is causing the right shoulder blade to stick out a little, and the front chest wall also, that I don't think was there prior to surgery. He said fusion to L2 may be needed down the road, but to wait and watch for now---well, he said alot more than that, but as I said, I think I will start a new thread on it.

So, I guess you take the good with the bad. Good luck to you, I am sure that things will continue to get better for Nicole. And I think, 20 degrees is a great correction!!

[Mom37]

Melissa,

It really sounds like she is doing great. Amanda's fusion was long, but high and I think that might have been in our favor for recovery. Amanda was given full clearance, but I think most nurses, doctors, and parents are more conservative, and really base it on the individual. We were hesitant to allow Amanda to ride rollercoasters too soon, but against our better judgement we gave her the ok to try within limites. She is very conservative, other than liking costers, so I told her to start easy and see what her body can handle, and she did ride one. Both her dad and I talked to her and felt she was ok if she was careful to try in moderation rides that were not so fast and bumpy and work her way to the others if she felt ok. I wouldn't be in a rush, but the doctor told her to listen to her body and whatever we allowed was ok. He actually told her she could bungi jump or do whatever your parents allow. Thanks! Well Amanda is very careful, and so we were able to allow her that. She is 7 1/2 months post op and just went Sunday to Six Flags. Now we said no to the Big Giant, wooden, bumpy coaster, but she never liked or road it anyway, and said she wouldn't do anything like that. She road the smooth Titan. Well I wish you all the very best and hang in there. I think most agree to wait as long as you can. Her Neurosurgeon thought she was crazy to want to ride rollercoasters after her brain surgery, but gave her ok. Smile! Oh she is swimming, walking, walking on treadmill also, stationary bike, and the elip. machines too. Swimming she is getting more endurance, but is not back up to competition level, or where she was after her first surgery.

[mariaf]

Melissa,

I agree with what everyone else said. I think Nicole is doing great overall. I agree that the correction she got is not bad by any means - balanced curves in the 20's may be better in the long run than a lower number that would have caused other problems with the spine (someone mentioned flat back, which I don't know that much about but I understand can happen).

As far as roller coasters and such, I think if it was my child - even if Dormans gave the OK to ride them, I probably wouldn't want my kid to do it this summer regardless. (David had VBS in March of 2004 and that summer I think I purposely stayed away from amusement parks! I know I was being very conservative - he'd been given the green light - but I guess I felt that not riding a roller coaster was better than risking injury (especially post-fusion).

On the bright side, look at all the things she CAN do now (gym, dance, biking, etc.). How did Nicole feel about what she can and cannot do?

Again, I think that overall it was a VERY good report! I'm very happy for her.

BTW, Flynn did her surgery right? Any reason you saw Dormans instead? Just curious.

Hugs,

[LorDon]

Hi Melissa,
Ditto what everyone else has said before me. I am so happy to hear that things are going so well and Nicole is finally able to do so many more things that she hasn't been able to do for quite some time. I know that she is chomping at the bit to get back to doing all kinds of dance, but hey, better to be safe than sorry. Believe me, I feel your disappointment, but in time, she will be dancing her heart out like she has done for so many years. She has her whole life ahead of her to dance and this is just temporary. It's so hard as a Mom to sit back and watch your child's disappointments, but in the end, let's hope these disappointments only make them stronger people.

I completely agree with Carmell and what she said about not being overly concerned with the actual numbers. Dr. Flynn stressed to us that the numbers weren't nearly as important as making sure he was properly aligned. Nicole looks amazing with a beautiful, straight back and nobody would ever know she has curves in the 20's, but they sure do notice her fantastic posture!

Hugs,

[MATJESNIC]

Thank you all for your wonderful replies. It means so much to me. When Dr. Dormans was finished the surgery, the first thing he told us was that she wasn't as flexible as he had thought. Her rotation was really bad before surgery, as well.

I am going to be happy with what she can do, and not dwell on the negative. Nicole is happy to go back to dance on March 26th. I already spoke to our dance school and she will do whatever she is able to do.

I just e-mailed the assistant because I forgot to ask about light jogging and he already responded that it is okay.

Maria-- Lori and Martha have Dr. Flynn and I have Dr. Dormans.

You guys are really the best. I am so happy to have all of you to share any kind of news. We are leaving for Florida on Sat. so I will talk to you all when we get back.

Thanks for all of the advice. Everything you said makes perfect sense.

Take care,

Melissa

[txmarinemom]

Melissa, I'm with Carmell and Lori ... I'd GLADLY be thankful for a curve *sensibly* corrected to 20° (I am;-) and feel great, rather than over-corrected, in pain and out of balance!

It's just a number, and certainly shouldn't be compared to hard work for *nothing*. Sometimes "less than perfection" is best in the long run.

Regards,
Pam

[MATJESNIC]

Thanks. I know I just said my big good-byes but I will still be around til Saturday!! So I can come on til Friday, at least. Who needs to wash clothes and pack when you can talk to all you wonderful people!!!

[Pooka1]

Melissa,

You must be relieved to be hitting this six month mark. Yours was the first six-month check-up I think I have read so I didn't know what to expect but it sounded very positive on the whole to me.

In re the ~20* curves, maybe that is more stable in the long run per what other folks have said. And would anyone even notice she has a curve if they didn't know?

W is at least T31* now and yet her clothes hang normally. If you didn't know there was a problem I don't think you would notice. SHe doesn't seem to have a big a rotation as S.

S, who is at least at ~T50* and I suspect more by now based on having pain every day now, has noticeable irregularities to her posture, shoulder angle, shoulder blade protrusion, the way her arms and clothes hang, etc..

With the daily pain, I see we did not schedule that surgery too soon. In fact I wish we had picked a somewhat earlier date. But she didn't start with the pain until a few days ago. I just hope she makes it to 26 March without it getting too much worse. I try to massage her back whenever I can and that feels good for her.

Anyway, I am very happy for you and your daughter being six months out. It's a big accomplishment for all involved.

Best regards,
sharon