Packet of info for surgery

[txmarinemom]

I asked him how many spinal fusions for AIS he as done. He said hundreds.

He also has some experience with the minimally invasive technique and said he didn't think it was ready yet in terms of instrumentation.

Are you familiar with surgeons in NC?

sharon

Wow ... hundreds!

That's pretty amazing since the two main surgeons in Houston probably don't do that many at Methodist and Shriners each!

I'm sure you spoke with several of his previous patients: Their fusions he performed went well?

[Snoopy]

Since Jamie is one of the few kids who returned to school so early, I think I better explain her situation a little better. Jamie was 13 y.o. and in 8th grade when she had her surgery done. For us, timing was everything. By that I mean we wanted the progression to stop but also we couldn't imagine having this surgery done once she started High School.

We were lucky in the way the school day was set up. Every other day, they had their core classs in the morning and the next day, they are in the afternoon. This meant that every other day Jamie didn't even get out of bed before 9 or 10 a.m.! Jamie has always taken advanced classes but we had to make some sacrifices during 8th grade. One thing we dropped was Spanish. Who needs Spanish? (No offense!) She never started taking Spanish until her Sophomore year and hasn't suffered at all.

I spent a lot of time talking to the school before we even had a surgery date for Jamie and I'm glad I did. I had everything in place from a set of books in the classroom, a set of books at home, allowing her to leave class early to avoid crowds, to having her sent to the office before a fire drill. I was VERY cautious.

I'll admit that Jamie wasn't totally caught up with her work when she returned to school but she was able to catch up very quickly. For us, it was more Jamie wanting to get back to school than it was for me to want her to go back just to stay caught up.

Jamie is a very driven young lady and always has been. She also has a VERY high tolerance for pain. During her 6 day hospital stay, the highest number she ever gave for her pain was a 3 or 4. Because of her high tolerance for pain Jamie was off ALL prescription pain meds within 2 weeks or so post-op. Do I recommend that? No. Was I comfortable with Jamie being off pain meds in such a short period of time, yes. But I've learned that most kids need the pain meds and recovery time for a longer period of time. She took meds when she needed them. I made her take Tylenol every day before school just as a precaution.

I hope I made our situation clear to everyone. Jamie is the exception from the time she came off pain meds and returned to school. Every child is different and will recovery differently. Also, I think the length of fusion and the number of hours in the O.R. have a lot to do with how some kids recover (although it doesn't apply to Jamie as she has a long fusion and was in the O.R. for a really loooong time).

Mary Lou

[Pooka1]

Since Jamie is one of the few kids who returned to school so early, I think I better explain her situation a little better. Jamie was 13 y.o. and in 8th grade when she had her surgery done. For us, timing was everything. By that I mean we wanted the progression to stop but also we couldn't imagine having this surgery done once she started High School.
(snip)

Mary Lou,

I think I missed your mention... how long was she out of school?

sharon

[nate03]

OK, So, clearly there are some serious Red Flags raised by the info you are posting. I hope you can see that the people questioning "you" are looking out for you..............They have been through this same surgery & none of their experiences are meshing with the info you are getting - obviously this is concerning to everyone. It is not a second guess on you - but in light of all this I really hope you would consider getting a second opinion from another dr not connected to the one you are currently seeing............
It can't hurt - and hopefully you will be able to go into your daughter's surgery completely confident that she is getting the best care possible.
-Cara

[Pooka1]

OK, So, clearly there are some serious Red Flags raised by the info you are posting. I hope you can see that the people questioning "you" are looking out for you..............They have been through this same surgery & none of their experiences are meshing with the info you are getting - obviously this is concerning to everyone. It is not a second guess on you - but in light of all this I really hope you would consider getting a second opinion from another dr not connected to the one you are currently seeing............
It can't hurt - and hopefully you will be able to go into your daughter's surgery completely confident that she is getting the best care possible.
-Cara

I explained why this surgeon is the right guy in an earlier thread. What specifically about that is a "red flag?"

sharon

[txmarinemom]

I explained why this surgeon is the right guy in an earlier thread. What specifically about that is a "red flag?"

sharon

Sharon, read back over what people have said. Nothing matches with much of anything the people who have posted have LIVED.

Cara's right ... people are trying to look out for you and your daughter's interests, and I'm not sure why you seem to have blinders on to everything that's pointed out.

You post things like "he does HUNDREDS of surgeries a year", and that's a MAJOR red flag.

You answer questions with questions, and you post instructions no one's ever seen. The kind of instructions that mark an inexperienced/underexperienced facility/surgeon.

You've never named this anonymous surgeon who does hundreds of surgeries a year. He must be quite famous; he's incredibly prolific.

I asked a simple question whether he was a scoli specialist or spinal ortho - and you avoided an answer (and with someone else, if I recall).

Please, please, please tell me he isn't a *regular* ortho. The stuff you are being told smacks of someone who does not do many spinal fusions (much less HUNDREDS) a year.

[sccrm08]

I think I missed something, I read Pooka1 post as saying the Dr. has done 100s of these surgerys, not that he does 100s a year, correct me if I'm wrong.

[flowerpower]

I read it the same way you did Patty.

[txmarinemom]

I think I missed something, I read Pooka1 post as saying the Dr. has done 100s of these surgerys, not that he does 100s a year, correct me if I'm wrong.

You are correct, Patty ... my bad!

The other concerns are, well ... still concerns.

[Carmell]

Sharon,

Please know (like the others have said) that the posts are meant to help you plan and prepare for this HUGE surgery. Scoliosis surgery is equivalent to your body being hit by a MACK truck. The manipulation and "construction" that goes on during scoliosis surgery (not a gentle surgery) is huge. Her body needs time to recover. I certainly hope (and pray) she is one who can go back to school at 3 weeks without looking back. Here are my thoughts...

1. PLEASE contact the school and/or district about homebound policies. The orthopods office is not the place to dictate policy, I'm sure. His office may be correct, but this is something you need to look into personally.

2. On a similar note, please talk with her school and plan carefully for her return. Mary Lou did a great job to plan, discuss, and plan some more for her daughter's return. This can only help her returning to school. Please talk to the administration (again, if you have already) and put a plan into place. Would you consider a 504 plan if (Heaven forbid) her recovery isn't as rapid as you plan?

3. Why does she have to have surgery immediately? What is the ortho's reasoning? Scoliosis is rarely an emergency situation. Is it because his schedule is booked already in June (many scoliosis docs have June/July scheduled up to a year in advance, for this very school issue). Have you had at least one other opinion on the recommended surgery for her? This is a topic for a whole other thread, but as young as she is, I'm worried about her body not being close to skeletal maturity and her having fusion surgery. What are the risks of future complications? Next thread, possibly...

4. If I were in middle school and my mom came to school with me to carry my books, I may be highly embarrassed at that age. Again, the school should be making accommodations for this very thing. Like the others mentioned, arranging for a second set of books to be at home is a necessity. Also, arranging for her to have a hall pass so she can get out a stretch for a bit, or more importantly, leave class 5 mins early so she misses the "salmon run" between classes. My concerns would be someone hitting her with a backpack or pushing her down because she won't be fast enough to keep up with the masses. She may also need that hall pass to use the restroom without permission until she's recovered enough.

5. Remember during the post-op period, and until the doc says her fusion is solid, no BLTs - no bending, no lifting, no twisting. This is very important, especially when she DOES feel better and wants to do more active things than she should. If she has even one area of failed fusion, it can be disastrous in the future.

I am offering comments based on my experience as a parent with a child who has had multiple scoliosis surgeries (anterior/posterior fusion as an infant, expandable rod placement at age 6yrs old, repeated expansion surgeries since, 2 tethered cord release surgeries, etc.). Through all of that, Braydon is a healthy pre-teen (teenager in May - YIKES!) who lives life to the fullest. He attended middle school successfully last year (out this year for other reasons) and has many friends who look out for him (he doesn't like the group of girls who "mother" him). Life is great. Our children's health and well-being is most important. I'm sure having a twin will help encourage her to progress in her recovery. Hopefully it won't set her back. My sincerest best wishes to you. If Dr. Hey is your surgeon, he is good at what he does, but I've heard from a couple of other parents that he is lax on details. Surgeons are just that - surgeons. They do their best work in the operating room. It's the parent's job to make sure the post-op details are worked out in their child's best interest. Sad, but true. Good luck.

[Snoopy]

Mary Lou,

I think I missed your mention... how long was she out of school?

sharon

Jamie returned to school 1/2 days when she was about 4 weeks post-op. What I forgot to mention last night when I explained that she only went half days, was that she only attended her core classes....English, History, Math and Science. At about 6 weeks she returned full-time. She wasn't allowed to take gym until the following school year so she was given permission to go to the library (she didn't stay in the gym for fear that she'd be hit by a ball or another child) and she used that time to get caught up on her work.

Hi Carmell! You were around this forum when I was planning for Jamie's surgery. I'm sure you remember how CRAZED I was about making sure everything was done well in advance and to my satisfaction. I'm sure I drove the school crazy, (and some forum members ) with my questions but everything worked perfectly for Jamie and I'm so glad I planned, planned, and planned some more!


Mary Lou

[Pooka1]

You post things like "he does HUNDREDS of surgeries a year", and that's a MAJOR red flag.

LIAR.

What the hell is the matter with you?

[Pooka1]

3. Why does she have to have surgery immediately? What is the ortho's reasoning? Scoliosis is rarely an emergency situation. Is it because his schedule is booked already in June (many scoliosis docs have June/July scheduled up to a year in advance, for this very school issue).

I assume it is because her curve moved so quickly. She was measured at ~48* in Feb and I'm guessing it is already much higher. She is more and more misshapen.

If it is because he is already booked for June/July I am going to be beyond mad.

There are some cases that can wait maybe. But as I wrote in an earlier thread, S is now getting daily back pain near where her shoulder blade is protruding. She didn't have constant pain until several days ago. Her rotation appears worse and worse. I'm guessing if we wait, the correction will be harder and she won't get as good a result but I will ask.

I've saved the rest of your advice into a file that I will use. Thanks for typing it out.

sharon

[Susie*Bee]

returning to school

From reading posts for awhile, this seems to be another area that doctors vary on their recommendations. Only a few weeks ago, it was Hailey/beach_chikie who said her doctor wanted her back at school at 3 weeks post-op. Here's the thread:

http://www.scoliosis.org/forum/showthread.php?t=6895

I think she ended up going half days for a week or two, and then full time. But I also think she said it was very tiring.

Pooka1-- I'll be praying for S on the 26th. Also-- my opinion (for what it's worth) -- after she returns to school, I think it would be more comfortable for her to rest lying down in the nurse's office than in the van-- but maybe your van is more comfortable than mine! Hugs.

[mariaf]

OK, my two cents - I think what is adding to everyone's questioning of information the surgeon gave that is not what they have EXPERIENCED to be customary (either with their own surgery or that of their child), is the mystery surrounding WHO the surgeon is. Normally, that's the first bit of information folks post. Heck, it's often in the signature because it is a big part of the story.

Is there any particular reason, Sharon, that you don't wish to share his name with us?

And as someone said, no matter how good the first surgeon you consult with is, most parents I know (in fact almost ALL of them) get second, third and fourth opinions. That doesn't mean they didn't like the first doctor - they may very well end up choosing him or her - but it's THAT big of a surgery and THAT important to be with the right surgeon.

Good luck.