PDA

View Full Version : Questions before surgery



Stac
04-06-2009, 05:09 PM
Hi, I am new to the fourm (posting), I have been reading this forum since 2004. This forum is great and I have learned a lot. In 2004 my daughter, Jess, was diagnosed with a curve of 34 with a compensatory lower curve. She now has a thoracic curve of 45-48. She claims she has pain and schedule surgery for May 28. I am really against this but we are moving forward. I have a couple of questions. 1. They want to give her 4 shots, one a week before surgery to produce more blood - is this procedure. 2. Do more people use there own bone or cadaver. Her doctor uses cadaver. 3. Should we do pre-op at the hospital or her regular doctor. 4. We have an appointment Monday to talk to the doctor, any questions I should ask? Thanks for your help!

LindaRacine
04-06-2009, 06:00 PM
Hi...

Is your daughter having her procedure at a university hospital? I haven't heard about anyone who has had the shots to produce more blood, and wonder if the surgeon is including your daughter in a study. (If that's the case, she should have been informed of it.) I would definitely question the surgeon about this issue, and try to ensure that there would be no detrimental effects from the drug.

I don't think it will make any difference where the preop is performed. If they're giving your daughter the option, she should do it wherever it's most convenient.

Good luck!

Regards,
Linda

txmarinemom
04-06-2009, 06:01 PM
I am really against this but we are moving forward. I have a couple of questions.

1. They want to give her 4 shots, one a week before surgery to produce more blood - is this procedure.

2. Do more people use there own bone or cadaver. Her doctor uses cadaver.

3. Should we do pre-op at the hospital or her regular doctor.

4. We have an appointment Monday to talk to the doctor, any questions I should ask?


Out of curiousity, why are you really against this if she's in pain, how old is she, and who's her surgeon? Have you sought other opinions from SRS surgeons?

1. Can't answer this one ... I haven't read where it's common. Is she anemic/borderline anemic? Do they anticipate excessive blood loss for some reason? Is she being asked to do autologous donation beforehand?

2. It's about split, I think. In adults, the trend is slightly leaning toward a combination of rhBMP-2 and allograft (cadaver bone) from what I've seen. BMP isn't proven effective for adolescents, and if a thoracoplasty is done, some surgeons will use that for graft material (simply because it's there). Not all surgeons are as quick to suggest - or even agree to - a thoracoplasty as others. Some do them regularly ... mine does not.

3. Neither. Pre-op is normally done at the hospital ... often with the anesthesia department. Her GP has no place in this process unless she has some other underlying condition.

4. How much do you know about the surgery? It's hard to suggest questions without knowing what you know ...

Regards,
Pam

Stac
04-06-2009, 06:39 PM
Hi Linda,

Thanks for your response. I think the name of the drug is erythropoietin (EPO). She will not be at a university. She will be at Sinai Hospital, Baltimore, MD. As far as I know she is not in any kind of a study. I will definitely ask the question about the effects of this drug.

Stac
04-06-2009, 07:17 PM
Thanks Pam for your response. My daughter will be 19, her doctor is Alan Levine, Sinai Hospital, Baltimore, MD. I don't believe all the pain is from scoliosis, it may just be from being out of shape. The last opinion we had the doctor told us she could not have pain from scoliosis and bascially threw the x-rays at us and told us to get another opinion. They did not ask her to donate blood. She is not anemic nor do they anticipate a lot of blood loss. The only thing I know about the surgery is that there will be rods placed in her back, posterior approach, the surgery will be about 3-4 hours and she'll be in the hospital for 3 days.

txmarinemom
04-06-2009, 07:56 PM
Thanks Pam for your response. My daughter will be 19, her doctor is Alan Levine, Sinai Hospital, Baltimore, MD. I don't believe all the pain is from scoliosis, it may just be from being out of shape. The last opinion we had the doctor told us she could not have pain from scoliosis and bascially threw the x-rays at us and told us to get another opinion. They did not ask her to donate blood. She is not anemic nor do they anticipate a lot of blood loss. The only thing I know about the surgery is that there will be rods placed in her back, posterior approach, the surgery will be about 3-4 hours and she'll be in the hospital for 3 days.

Stac, I have to respectfully disagree with you that her curve isn't/can't be causing her pain. My back hurt from the time I was 10 years old until I had surgery. Don't add to her misery by making her believe you think she's overreacting. She needs your support for HER, not your support of a doctor's opinion who threw x-rays back at y'all (WAY unacceptable).

I see her surgeon *is* SRS, but oddly with the Cancer Institute of Sinai Hospital. Just my suggestion, but I think you should get another one or two opinions just so *you'll* believe her/buy into this. You won't be any good to her through all this is you can't shake the non-supportive attitude she's not in pain. There are many here who will assure you scoliosis CAN (and often does) cause pain.

Her physical condition is at fault vs. a documented 45-48 thoracic curve? What???

I was in fantastic shape from the time I was diagnosed (at 35) until I had surgery ... and in pain that would DROP most people for almost 30 years. I never realized how fortunate I was to have parental support. It's imaginable to me my Mom would ever say she didn't believe my curves were the cause of my SEVERE pain.

BTW, I wouldn't count on 3 days in the hospital, and trust me, if she can't get out by then, she *isn't* faking.

emwonderfull
04-06-2009, 08:15 PM
:eek:

Amen Pam!

Stac~I have been in pain since I was about 11. I have lived with the pain completely from my scoliosis. I function, smile laugh and do more than most people can believe. I have kept my hair long to cover the deformity...people are amazed when I lift it up that I'm not on disability. Encourage your daughter find out more about her surgery and it sounds like you should get an opinion from one of the docs someone on this site has seen and recommends. So much of what you asked doesn't sound right. I did a lot of research, ten years later than I should have. I almost had my surgery with one Dr. but just didn't feel he was the right one for me. I love the surgeon I have now, search for the right one! It is so important.

Good luck!