Bone for fusion - any input

[jc3]

bone for fusion

Hi amymichele
good luck with your apointment oct 1st. what is your daughters curve?? I also wanted to do the surgery asap, since i knew it had to be done i just kind of wanted it over and i figured in the winter there isn't much going on for her, it's cold and no one is really going out and by the spring she will be recovered.
I wish my daughter would come on here and talk with other people but she is not interested in doing that.
I know as the day gets closer the more nervous i will be. I just feel so bad for having to go through this much pain that she will be in.
keep in touch
jennifer

[Bill's mom]

Ladies-

So nice to share stories and to hear that we all feel pretty much the same. The same fears and anxieties. Also nice to hear of people on the other side of surgery. (I work with someone whose daughter had the surgery in June and she is doing very well, so that helps make me hopeful.)

The question for us, as for you Amy and Jennifer, was not whether to have surgery but when. We actually scheduled it the first week the doctor was available. I hate that Bill will miss school, but I think he views that as one of the few pluses about this entire ordeal.

Jennifer in response to your questions -

I don’t know how it is that our son happened to be one of the few boys to get this. He’s grown about 8 inches in two years and is long and lean. In addition, it runs in my family. I have a slight case of scoliosis as does my mother. Our two girls (one older, one younger than Bill) so far do not display any symptoms.

Bill has two curves. One is 28 degrees and the other is 53. I discovered his scoliosis in June when he complained about his back hurting. What a shock when I looked. He will be fused from the T3 to the L3 and his doctor told us it would be a long surgery. (When I asked “8 hours?” he said probably not quite that long.)

He’s not in pain currently and with a shirt on looks "normal". (He has no hump when standing and his shoulders are barely crooked.) He appears very unconcerned about it for right now. He doesn’t talk about it very much – most of his friends are unaware of his scoliosis and upcoming surgery – only when he chooses to discuss being out of school for at least a month does he even mention it to anyone.

He had an MRI about a month ago to rule out anything else going on with his spine. (Being a boy is unusual and his curve is unusual.) Thankfully, the MRI came back OK.

Our next medical appointment is with a pulmonologist (since he has asthma). Hopefully, he’ll pass all those tests so he won’t need additional treatments in that area before surgery.

My husband’s and my current discussion is what bone to use for fusion (that’s why I started this thread). Additionally, we’re concerned about Bill giving his own 1 to 2 units of blood. (He’s 5’11” and 128 pounds. Not much excess anything on that frame.)

I will absolutely continue to stay in touch with you (although it may be days before I communicate a response since I can never get computer time at home and at work, they actually, expect me to work!) Let me know what’s next on your medical agenda.

Susan

P.S. - Just previewed my message and several messages had come in. Busy board this morning. Amy, loved your description of discussions. I, too, sometimes marvel at discussing this surgery without any external emotion. And, I think thinking about what he'll have to endure after surgery is what makes me cry now. I just keep telling myself that we are fortunate that this is something that can be corrected. (And, thanking God for insurance!)

[jc3]

bone for fusion

hi bills mom
it is rare that boys do get this, but it could happen when there is scoliosis in the family unfortunately. I have a boy who is 10 and another daughter 7 and so far they are fine. I am crossing my fingers because i couldn't bear to go through this again.
i am also concerned about her donating blood, she is 5'4 and weighs 99 lbs and is scared to death of needles. She doesn't know yet that she will have to donate blood, but i think possibly someone else could donate for them but i'm not sure. I think the drs. like for them to use their own. They said they will send me paperwork on all the tests she has to have. I cry when i talk about her having this surgery. When my daughter had her last check up a few months ago her curve was 43 degrees and the dr. told us to consider surgery and asked us to set a date and gave us a date of august 8th, which just passed. I canceled it before we had any tests done because i was hoping for a miracle that it would just stop getting worse and i wanted to wait for her next appointment, which it then went to 50 degrees, but the surgery date was already cancelled. So now we made the new date, which is definitely the date. We just were not mentally ready to do it at the original date.
keep in touch
jennifer

[Amymichele]

jc3, Lacey's curve is thoracic, about 53 degrees, and has created quite a hump on her right upper back.
thanks for the luck ..you too

[jc3]

bone for fusion

hi amymichele
your daughters curve is just like my daughters. Well keep in touch. I think this is such a hard decision for us as parents to make for our children, but hopefully later in life they will thank us. How is your daughters attitude towards surgery?
jennifer

[Alleycat]

Hello, I had bone graph from the pelvis in my surgery. The only question I have is does your son play sports? I do and because I had the bone graph from the hip. They had to cut some of those muscles there. They did grow back, but it is a lot of pain. I takes a little longer to get back used to running and jogging (walking doesn't really hurt). But I can say that I had my surgery 3 years ago, and it was about a year and half before I could run and jog with no hip pain. Also, I play many sports for my high school and my back doesn't give me many problems.