PDA

View Full Version : Bone for fusion - any input



Bill's mom
07-27-2004, 12:54 PM
I'm a fairly new member although I have been reading this board since my 15 year old son was diagnosed in June. (And, thanks Mary Lou for your response to my question regarding his doctor.)

He is scheduled for surgery in November. My question is - what are your thoughts on the bone graft? Is it better to take bone from my son (doctor said he would take it from his pelvis) or to use "bone in a jar" (as the doctor calls it)?

The doctor says he generally prefers to use a bone from the patient, but then recovery tends to be longer. So, he is not opposed to using sterilized bone that is not from my son.

(Hope my terminology is correct. I'm still fairly new at this!)

If you have any insights, I'd sure appreciate them.

Thanks.

Boo
07-27-2004, 04:33 PM
I tend to reserch my condition quite alot, and the reason doctors prefere to use bone from the patient is because it is less likely he would get an infection during the process. Hope I helped!

mumof5
07-27-2004, 06:18 PM
Bone from the patient 'takes' better than 'donor bone'. They used bone from my daughters hip (they also did thoracoplasty). I don't think her recovery to date has been much different to anyone elses.
I hope this helps.
Best wishes.
Cheryl.

LindaRacine
07-27-2004, 06:36 PM
Hi Bill's Mom...

Although there is a TINY risk of infection from donor bone, it's not something that I would personally worry about. (The donor bone is sterilized before it's used.) There is, as Cheryl mentioned, a higher risk that fusion won't take when donor bone is used.

I would personally say that the scales are about balanced on this issue. If your son's surgeon has a clear preference, I'd definitely take that into consideration.

Good luck!

Regards,
Linda

JediGirl
07-27-2004, 11:17 PM
I had a bone taken from my hip/pelvis and was out of the hosptial in six days afterwards.I didnt know how less time I would have had in the hosptial with a donor bone.

As for recovery at home,my back hurt more than anything and I didnt seem to notice anything wrong with my pelvis area.

Bill's mom
07-28-2004, 08:44 AM
Thanks everyone for your responses. I really appreciate your insights.

The doctor has pretty much said he doesn't really have a preference. My gut reaction is to use my son's bone. My husband's is to use donor. My son is totally into not thinking about it!

We'll just continue to research.

Thanks again.

Alison
07-28-2004, 08:59 AM
Own Bone: Best Match/Possibilty of taking BEST, all own
body in fusion

Cadaver Bone: Higher Risk it won't take, but no bone taken
from you

Own bone +Cadaver Bone: Not a good combination, has
lowest chance of taking properly,
not a good preference

I agree with Linda, the scales are pretty balanced on this issue, really it comes down to often the surgeon's preference (ie my surgeon used cadaver bone for fusions over 8 vertebrae, where the surgeon who assisted him always uses the patient's bone when he does fusions) and also what the patient/parent feels comfortable with. The "pain" from the fusion afterwards seems to be the same whether own bone or cadaver bone is used.

alison

TX Mom
07-28-2004, 11:07 PM
My daughter's surgery was in June. Due to her rib hump she had a thoracoplasty and her own bone was used in the fusion. Her doctor left it up to us as to whether they used her bone, hip graft or donor bone.

Good luck!

paulasue2
08-07-2004, 10:41 PM
My daughter's surgery was March 18, 2004 and the surgeon preferred to use donor bone. She is doing great and has one less scar. Several people on this board in the past have mentioned that the pain from the pelvic bone was as bad or worse than the fusion. We did not have a strong preference one way or the other so went along with the doctor's preference. I think it also may depend on the number of vertebrae fused and whether your child will be having any ribs removed, which could be used as fusion material for shorter fusions. Good luck.

jc3
08-08-2004, 11:13 AM
hi paulasue
i have also heard that taking the bone for fusion does cause more pain. How is your daughter doing. we just scheduled surgery for our daughter for nov 3rd and they will be using bone from her rib for the fusion since she has a very large rib hump. I am very nervous and feel so bad that she has to go through this.

jennifer

Bill's mom
08-09-2004, 10:03 AM
paulasue,

Thanks for your response. I'm beginning to lean more towards donor bone. My son is tall (5'11") and the fusion is going to be a long one. I hate to think how much bone they'd have to take off his hip.

jc3,
My son's surgery is scheduled for Nov. 3 also. We had tentatively scheduled the date at the last doctor's appointment, but we got the paperwork in the mail on Saturday and it made me cry all over again.

How long have you known about your daughter's scoliosis? (We discovered my son's in June. Surgery is the only option.) He's doing pretty well, actually, he apparently just doesn't think about it. (I wonder what that's like!) It's horrible to be going through this, but I am grateful for this board and the shared experience.

How old is your daughter? (My son is 15.) As a mom, I think I probably know how you're feeling. How's your daughter handling it? Let's keep in touch as the day approaches...

jc3
08-09-2004, 02:33 PM
hi billsmom
i can't believe that their surgeries are on the same date.
we found out about my daughter having scoliosis about 2 years ago, she is now 14. It was only 18 degrees when we found out, by the time we got picked a dr. and got an appointment which was four months later it was up to 24 degrees, which they suggested a brace. My daughter refused to wear it at the beginning and then finally started wearing it only to sleep. Every four month check up it would get worse and worse and here we are 2 years later with a 50 degree curve and a significant rib rotation, which is very noticable. It doesn't seem to bother her at all. She has a very negative attidute about having scoliosis and the whole surgery, but we know in the long run it is for the best.
i am also very grateful for this board, i don't know what i'd do without talking to all these other people going through the same thing. It is so scary the whole thing. She is also going to have ribs removed for her rib hump, which they will use for the fusion. The dr. said the surgery would take about 3 hours, which i thought would be alot longer.
I would definitely love to stay in touch through this and we can compare notes on recovery as well.
thanks for writing, write back. Tell me about your son, what is his curve, etc..
They do say that it is rarer for boys to get it and when they do it is usually found later, since they go through puberty later. I have a son and another daughter and i hope they don't have to go through all of this also.
write back
jennifer

paulasue2
08-09-2004, 10:23 PM
Hi, Jennifer,

My daughter is doing amazingly well - once she got past about two weeks post-op, she started an amazing rebound. Now, the main problem is keeping her from overdoing things - she feels pretty much like her old self, but in reality, the fusion is still fusing, so to speak, and I worry constantly about her doing stuff she shouldn't be doing yet. Other than that, life is pretty much back to normal (if "normal" is ever how you can describe life with a teenager - ha!). Keep the faith - one day you will be on the other side of this ordeal looking back. Paula

Amymichele
08-09-2004, 11:08 PM
Hi Ladies
finally getting around to checking back in here.
it's so nice to know this place is here, waiting, with such great advice and encouragement on every detail imaginable dealing w/ scoliosis.

We, will see Dr. again Oct 1. We've decided to try to schedule for as soon as possible...for many reasons.
So, Lacey MAY be having her surgery very near to the same time as Bill & your daughter, Jennifer. If so, we should most definitely 'make' them communicate here w/ each other before and after:) . They'd be a great source of strength for each other.

We, too, are wondering about the bone issue.
Again, this forum has been a good source of information.
We feel quite sure now of exactly what to ask him about.
He has not mentioned rib removal, but we have not talked details yet.

Sometimes I find myself matter-of-factly discussing the details of all this w/ someone, and just SHUDDER inside. We do what we have to do. But, this process we are about to enter is quite scary for me.
I have learned well how to cope w/ pain, physically and mentally.
But, she's only a child!
A child who has, thankfully, had very little extreme pain in her life.
She's remarkably healthy.
Which makes it all the harder to explain to her the huge importance of taking this step.
She's a great kid! With a big heart, and a fabulous sense of humor...that I know will serve her well in the months to come.

It's so good to vent these thoughts and anxieties here.

Talk to you soon, friends,
Amy

jc3
08-10-2004, 09:20 AM
paulasue
that is so great that your daughter is doing so well. I hope i can be on here posting that after my daughters surgery. we did meet a girl at the drs office the other day who was 3 weeks post op and she was doing amazingly well. She said she felt great and the mother was also complaing about her doing too much already. I think that will be a big fear of mine too after worring that she will get bumped or something before she is fused.
thanks for writing
jennifer

jc3
08-10-2004, 09:25 AM
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
08-10-2004, 09:48 AM
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
08-10-2004, 10:12 AM
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
08-12-2004, 06:33 PM
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
08-12-2004, 09:34 PM
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
08-28-2004, 07:51 PM
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.