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Thread: New with lots of questions

  1. #31
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    Jan 2006
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    Thanks!

    It gives me great reassurance from everyone to know that we're not alone in all of this. The hospital we're going to for the MRI is an hour away, so probably need to have it done all at once. You can be sure I will call there first thing tomorrow morning and let them know that we may need a sedative and that I am going in with him. I went in twice when my husband had his done at our local hospital, and they just gave me ear plugs. Wish me luck!

    Laurie

  2. #32
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    Jan 2006
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    Good Luck Laurie!

    Let us know how it goes. I agree that this group is such a great comfort. It is so nice to hear from others who have been where we are now.

    Katy

  3. #33
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    Jan 2006
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    On to the next step....

    Hello to everyone and thank you again for all of your support!
    I ended up calling the doctor's office the day before we went and they said that the doctor had changed the orders and it would take only one hour to do the MRI. (wish they'd have told me!!) Anyhow, Josh was very anxious and they would not let anyone except a tech in with him (the hospital we were at had it's own waiting area just off where the machine was, so I was still within a few feet of him, but still!! How is a tech going to give him comfort?!). He had a mild anxiety attack and they had to stop and take him out once, but he made it through. Now we have to go back and meet with the orthopedic specialist on Friday to discuss the results and they're going to take more x-rays to measure bone growth or something like that? They wouldn't tell me anything on the phone, even after I was persistant, so I am praying all goes well.

    I will let everyone know how it goes Friday.....

    Laurie

  4. #34
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    Jan 2006
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    Laurie,

    Glad you survived the MRI. I'm jealous because ours was over 2 hours! They did an x-ray of Graham's hand to measure bone growth. They used it to tell if he was finished growing. He's not! In fact this is a question I had for the Dr. next time - is it better to do the surgery before or after he has another growth spurt? Anyone know?

    We are still anxiously waiting for our appt. on Feb 1st to see what we will do and when.

    Let us know what you learn on Friday.

    Katy

  5. #35
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    Jan 2006
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    74

    MRI Results

    Hi everyone! We got the results today and there were no abnormalities or anything else wrong found by the MRI. What a relief! They did the x-rays today to measure bone growth and to see how flexible he is. We were told he still has some growing to do (and at age 13 his bones are age 14?), but right now is the optimum time to do the surgery because they can do better correction while he is this flexible. She said that she was surprised at how much flexibility he does have. The doctor said he would need to be fused from T3 to L4, is this common? She recommended a second opinion, although with the degree of Josh's curves there really is no other option besides surgery (75 and 55 degrees). Apparently the curve happened during a growth spurt in the past year and it went unnoticed because he isn't unbalanced at all. The upper and lower curves kind of balanced each other out. We set up a surgery date of April 10, and we need to have Josh donate 3 pints of blood up to that point. In the meantime we will make the appt for the 2nd opinion and this doctor will supply us with all the x-ray films, etc. She sat and talked with us for 90 minutes this afternoon, and went over every single detail with us. I was just so impressed because she looked at our son when she was addressing the surgical issues, whereas most doctors always talk to the parents, even though it involves our son. I am very happy with everything right now, albeit still nervous.....we'll see how I am come that first week of April

    Laurie

  6. #36
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    Jan 2006
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    Laurie,

    It is always great news to hear that you are only dealing with Scoliosis. I'm glad you are getting a second opinion even though surgery is the only option. You just might find that you or your son like the 2nd surgeon better or maybe that doctor is more expereienced....but if you are happy with the 1st surgeon, stay with her, she sounds wonderful. Jamie's surgeon is the same way...he talks to her and not about her.

    As for the week before surgery, well, you've read enough post to give you a good idea of what to expect. Please know that we are all here for you through this entire journey.

    Mary Lou

  7. #37
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    Jan 2006
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    Laurie,

    Great news about the MRI. So glad that you liked the Dr. That is so important. Except for the age it sounds like Graham and Josh are the same (Graham is 15). He too had a growth spurt which caused the curve to show up, but is so balanced that you couldn't tell. His shoulders are almost even and his hips as well. He has 3 curves and the top and bottom curve are both 45* ( the middle is 64*) so they offset each other.

    Anyway, I am so glad all is goin well. Did Josh like the Dr? How is he handling everything? Keep us posted.

    Katy

  8. #38
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    Jan 2006
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    74

    Great support here!

    Mary Lou:

    I'm glad you got a great surgeon too, one that talks to your child. Besides the couple issues I had about blood donation (she recommends self blood donation and we need 1 pint every 3 weeks for 3 pints total stored) and bone grafting (she doesn't do it, she uses donated and does something to it with your blood to make it like your own?), that was really the clincher for me. Has your daughter had surgery yet or a surgery date? It really has helped me so much to know we're not alone in this journey, and to be able to read what everyone has to say.

    Katy:

    It really was a relief about the MRI. Is your doctor close to where you live? I do feel comfortable with our surgeon, she really put us at ease, as far as going into her educational/training background. She said she only takes on about 12 surgeries a year. What do they do for 3 curves, is the treatment the same? Josh had a couple questions for her, and he was satisfied with what she had to say. He still isn't ready to go online yet and check things out, and I think he is kind of just letting everything sink in right now.

    Has anyone else's doctor moved things along so quickly? We just got the diagnosis on January 11 and here we're scheduled for surgery already on the 10th of April.

    Laurie

  9. #39
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    Jan 2006
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    Laurie,

    Jamie already had her surgery and is 13 months post-op. She is going great! You will be so glad that your doctor is using donated or "fake" bone as I call it because I don't know the real name of it. Jamie's doctor used the fake bone, added her own blood to it and also used some of her own bone that he took from her spine. Jamie had a very quick recovery (back at school within 4 weeks half days and full-time by 6 weeks) and I know that was partly because she didn't have a donor site to recover from. I've heard a lot of people say that the donor site is more painful than the back.

    Hang in there.

    Mary Lou

  10. #40
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    Jan 2006
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    Laurie -

    Our doctor is about 1 hour away at Shriner's Hospital in Spokane. They haven't decided yet how they will fuse the curves. Apparently they don't do anything with the top curve. They will be taking more x-rays on Wednesday to see how the lower curve will respond if they only fuse the middle curve. Of course now that the MRI showed the spond. that may factor in as well. If they have to fuse both they said they would do the lower curve separately and go through the front (anterior).

    We met with the physical therapists who worked w/Graham on Friday and they were very supportive. Everyone was disappointed that they weren't able to help the scoliosis, but gave us lots of positive encouragement from their experiences with other spine fusion patients.

    This was the first time my husband went with us to talk with anyone about the surgery, etc. and it hit him pretty hard that night. It took me a while to figure out what was wrong. I've only seen him cry twice, after the births of our last 2 girls, so I was shocked to see that he had been crying. I guess dads have a hard time with this too. Graham is his only boy, the oldest, so they do lots of stuff together. I would be interested in how other dads have handled this.

    Mary Lou - I'm curious about what you mentioned about donor bone. They said that they would take bone from Graham's rib as he had plenty there. I'm wondering if this is something I should ask about. It seems it would be better to use your own bone, but maybe not? I will add it to my list of questions.

    Thanks again to you all. What a great bunch. Wish us luck on Wednesday.

    As a side note, my dad's cousin (65 yrs old) who is like his brother has a bicycle accident on Friday and broke his neck and his back. He is in the hospital on a ventilator and if he does live his prognosis is very bad. He and I have become pretty close in the last few years and it is just bizarre to me that he would have a major spinal injury right now. Maybe it means nothing, but it has me a little spooked.

  11. #41
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    Jan 2006
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    Mary Lou:

    I tend to research the heck out of everything and wanted to know everything I could before we met with the doctor. One of my biggest worries was about the bone grafting, and that I'd read people have more pain from that later on than the spinal fusion. She does that exact same thing with the donor bone and blood, I was so relieved. Did Jamie have to donate blood? The doctor said it would add to the cost but that isn't about to deter us. I can't even imagine what the bills will be like after this, but nothing is more important than our son to us.

    Wow, 4 weeks off and then 6 weeks back full time, that really helps me out to know that as I need to call our school tomorrow. I don't know where that will leave us as his surgery is April 10, and I think we're done the end of May/early June. Thank you again for your input!

    Katy:

    My husband went with us for the big discussion this last time. He works with someone whose daughter had it done a few years ago and was getting input that way, but being with the "guys" at work I think they all tend to shrug it off. I showed him my research and he read alot on the way down to see the doctor. I don't think it hit him, either, until we were sitting in that office. I mentioned to him that I was going online and talking to people and he seemed pretty interested to know what was going on with other people and how they are dealing with things. This is such a wonderful forum!

    About the bone grafting, most of what I read they took the bone from the rear hip, so I don't know how it would be from the rib.

    I wish you luck on Wednesday, know that my thoughts are with you and keep us posted. I'm sorry to hear about your dad's cousin, too, it's just got to be a coincidence that he is facing spinal surgery as well. Keep thinking positive thoughts and my prayers are with all of you.

    Laurie

  12. #42
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    Jan 2006
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    12
    Katy,

    I would imagine that it is better to use your own bone, but I'm not sure. It wasn't something I worried too much about. With Jamie her doctor did a procedure called osteotomies (sp?) and that's where they got most of the bone they needed for her fusion. I pulled out my report from her surgery and this is what it said, patient's autologous bone was placed and supplemented with four units of Symphony bone. I take it that they used 4 units of "fake" bone? I might be wrong.

    I'm glad your husband is finally going with you to at least one or two appts. My husband never went to any appts. until we had a family conference. Although I've always kept him up to date with what was going on, I think that meeting made it real for him. I think a lot of my husband's problem is that his mother never deals with medical things and therefore, he was never taught how to deal with stuff like this. The day of Jamie's surgery was very hard on Jeff. When he finally got to see her in her room, he had to leave the room. I thought for sure he was going to pass out on me and he later told me that he did almost pass out, but he went to the restroom and had himself a good cry. Like your husband, Jeff is not a crier. I had a terrible time getting him to go home that day. He just hugged me and hugged me like he was drawing strength from me and I guess he was. I am happy to say that the next day when a lot of the tubes came out, he dealt much better with everything.

    I'm sorry to hear about your husband's cousin. I'll keep him in my prayers. Please try not to let this spook you. His situation is totally different than Graham's.

    Mary Lou

  13. #43
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    Jan 2006
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    Laurie,

    Jamie did have to donate blood. They wanted 4 units, but she was only able to donate 2 and they used both units in the O.R. Isn't it funny how we moms watch every penny when we go grocery shopping or something like that, but when it comes to our kids' health, we throw all caution to the wind? I too didn't worry too much about what donating blood or anything else would cost. I figured the hospital would just have to except weekly or monthly payments from us until the bill was paid in full. I think Jamie's surgery/hospital stay was well over $100,000 but worth every penny of it!

    If you read this before you call the school, remember to ask them about fire drills. No one ever mentioned this to me, but it was one of those crazy things I thought about and it turned out to be very important. Jamie wasn't allowed to change classes with everyone else so what they did was call her to the office a few minutes before the drill was announced and she just stayed in the office during the drill.

    Mary Lou

  14. #44
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    Jan 2005
    Location
    Northeastern Oregon
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    Laurie,
    My daughter had donor bone for her fusion. She seems to of had no problems and I think by using the donor bone, she was able to heal faster. I have heard that the area they take the bone from if they don't use donor bone can be sore for a while. Also, she didn't donate any blood for her surgery and didn't require any additional blood.

    Crystal was back to school at three weeks post op anywhere from half days to full days. She was back full time by six weeks.

    I hope this helps.

    As far as the dads go, I think they all tend to be pretty quiet. Someone said something like "It's the one thing they can't fix themselves." I think there is a lot of truth to that statement. Craig went to all of our appointments, we had to drive 5 hours one way and all three of our girls have scoliosis/kyphosis. So, his help was greatly needed. He didn't really talk about the surgery much. He did spend a little time with Crystal talking to her about it, which was a good thing. But, when it came time for surgery and they wheeled our daughter into the surgery and I cried, he was my rock. Give these men credit. They have a hard time dealing with things that they can't fix for their kids. However, when the going gets tough, you'll be surprised. Remember, women tend to want to talk about these things, men want to ignore these things as long as possible.

    Nikki

  15. #45
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    Jan 2006
    Posts
    25

    Thanks again!

    Thanks again to all of you for responding. You are all such a blessing! I appreciate your prayers for my dad's cousin (his name is Jack). I know it's just a coincidence.

    I think that we have all pretty much come to grips with the fact that surgery is the best thing. I was thinking about my husband and Graham yesterday and thought "Graham may not be able to go bike riding or backpacking with him this summer, but he will still be able to in 30 years if he has this surgery". Realizing that it is the best thing for the rest of his life.

    Anyway, thanks again, I will let you know what happens on Wednesday.

    Katy

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