Announcement

Collapse
No announcement yet.

thoracoplasty

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • thoracoplasty

    hi
    txmom and cheryl
    i read in the post about bone fusion that your children had a thoracoplasty. We just found out that our daughter needs surgery her curve is now up to 50 degrees and she also has a rib hump and when i asked the dr. if that would go away, she said she could do a thoracoplasty. I've been researching on it and it seems alittle scary to me and its seems that recovery from it takes longer. i am undecided if i should have it done or not. I was wondering if you could give me your input on it. I would appreciate it.
    thanks jennifer

  • #2
    thoracoplasty

    Jennifer,

    If your daughter is having spinal fusion the doctor will need to do a bone graft. We had the option of hip graft which our doctor said was more painful than thoracoplasty as well as having an extra scar (from the hip area). Since she had a rib hump we were glad that she could have that removed and the bone used in her fusion. The other option is donor graft which we didn't consider due to her hump.

    By the way, they removed pieces from 5 ribs for the thoracoplasty. At her 6 week check-up when we saw the xrays, the ribs have already started to regrow.

    I understand it sounding scary to you. We had many apprehensions about the surgery. This forum is a great resource to get your questions answered as well as to know that you are NOT alone in this!

    Comment


    • #3
      thoracoplasty

      thanks so much for replying.
      Yes, my daughter will be having a spinal fusion. How does your daughter look now and do you think her recovery was worse due to having the thoracoplasty?? When was her surgery?
      thanks so much again and yes this whole thing is so scary
      jennifer

      Comment


      • #4
        Hi.

        My daughter's surgery was June 7. It was 6 1/2 hours long...the longest day of my life! She looks beautiful! She stands so straight and when she bends to pick something up there is not a hump. We are thrilled with the results. It was a very difficult 3-4 weeks but she is 7 weeks post-surgery and doing great. She has been cleared to do just about everything...she swims, runs, shoots hoops, etc. However, she can not water ski or play basketball until January. (If she wasn't in high school where basketball is so physical, she'd be able to play now.)

        I asked her if she is glad to have had surgery and her reply is "Not yet. But I am glad I don't have a hump anymore."

        Have you talked about a date for your daughter's surgery?

        Comment


        • #5
          Hi,
          Amber is 11 1/2 weeks post-op now. I did write somewhere about her 'hump' now being about half it's original size. She is glad that she has had it done. Talking to people on here, I don't think that Amber's recovery has been any longer than anyone elses. Her fusion starts at T4 and she has had a few 'issues' with her shoulders. This has mainly been from her body reverting to it's pre-surgery position. This makes her shoulder blade 'stick out'. She doesn't like it but has found the best way to deal with it is to lay down for awhile. I am confident that this will get better with time.
          Our surgeon had said to us that he could do the fusion without touching the ribs, hoping that the correction would be enough to reduce the hump, but because of the size and 'shape' of the hump it was unlikely that it would go down by very much. He said that with that senario he may then have to perform another surgery to do the thoracoplasty. His opinion (and ours) was that one lot of surgery would be much better.
          I know it is a very scary thing to be facing, but our experience has been very positive. If I was faced with the decision again I would go ahead no hesitation. I feel that it also negates the question of using donor bone, as your daughters own bone will already be there ready for use.
          I hope this has helped you.
          Best wishes.
          Cheryl.

          Comment


          • #6
            thoracoplasty

            txmom,
            thanks for replying. I'm sure that day was the longest day of your life. I can't even imagine what that day will be like, but It is great to hear that your daughter is doing so well already. We don't have a date for the surgery yet. We are meeting with the surgeon on thursday and will see what he says. I am so nervous about this whole thing and it just worries me that she is in absolutely no pain at all and i know that she will have the initial pain from the surgery, but i worry about down the road that she will have pain. She is totally in denial about this whole thing, which is a problem also and does not want to have surgery.
            thanks again for your support - i need it
            jennifer

            Comment


            • #7
              thoracoplasty

              hi cheryl
              thank you also for writing. I'm glad to hear Amber is doing well also. I was alittle confused, i'm not sure if i remember, did amber have a thoracoplasty or not? I've been talking to so many people i forget who is who.

              jennifer

              Comment


              • #8
                Hello All,

                I have been viewing this forum for a few months and now join in.
                I have a 15 year old with a 53 degree upper curve.

                I don't know what the lower one is. My daughter's Dr has not gone into that too much and says she is not sure how far to fuse because that limits mobility more. And it may straighten out as the thoratic part is done.
                It seems this call could be up to us bc she said you can go back to add more rod but not as easy to take it back out.

                She and her colleague have not been enthusiastic about removing any ribs.
                Does this require a special anethsiologist (does any one know if a lung has to be deflated? Have I read too much?

                I am shaking as I type these questions.

                I think we will do the hip graft. Is it really painfull?

                I know it is but how do your children feel about it?

                Also did anyone get more than 1 or 2 opions?
                Ste is in a little pain everyday and takes motrin about everyday.
                She tries not to though unless it is really annoying and hurts. Which seems to be in the mornings or /and standing on hard surfaces for a while.
                Well every nite I try and check this forum and txmom has been very helpful..thx
                Thank you for all your thoughts and info, another txmom/kay

                PS I am not very computer savy so forgive confusing typos.
                now 16 yr old daughter
                with worsen 65 degree upper curve
                surgery Nov 3, 04

                Comment


                • #9
                  thoracoplasty

                  hi mamakay
                  i'm glad you got in on this. I don't know what i would do with out these message boards, they are really great.
                  my daughter is 14 with a 50 degree curve. I also read that in order to remove the rib hump and do a thoracoplasty they have to deflate the lung. I think i have been reading too much also and that is why i am leaning towards just doing the spinal fusion and hope that it corrects the rib hump even a little. My daughter is so skinny so you see on one side the rib hump with certain shirts she wears, but when she bends over at the dr. it is bad.
                  It doesn't seem to bother her at all, but she is only 14 i'm sure later on it would. You said your daughter had pain. My daughter is never in any pain. My daughter does not want the surgery at all and has been in denial of this whole scoliosis since she found out she has it. She just wishes it would go away, but unfortunately it won't. I am going for a 2nd opinion on thursday, even though there is basically nothing else they could say. we know that she needs to have the surgery unfortunately. Its so scary the whole thing.

                  Comment


                  • #10
                    The whole denial thing seems to be pretty normal. Amber didn't want to talk about it at all and at times would get very angry with me if I said anything about it. Everyone deals with stress in their own way. It's hard as a parent when you want to do what is best for them, but at this age they need to have input into what is done to them, you 'need' to know who they feel and they won't talk about it. That adds more stress to the parent who was already stressed. As a single parent I found this extremely hard as Amber is the one who shares everything with me and me with her. (I have 5 daughters).
                    Yes Amber did have thoracoplasty. They removed about 3 inches from each rib rib T8 to T12. She is fused T4 to L4. Her curves were 68 and 63 corrected to 15 and 20 degrees, she gained about 2 inches in height. Her scar is about 16 1/2 inches long.
                    Amber still has slight curves above and below the fusion, her Dr is confident that they correct with the fusion. There is still a chance that they won't and that she will need further surgery. Right now it's just too soon to tell. The Dr. said we would know around the 12 month mark.
                    I might be wrong but as far as I know you can't undo the fussion at all. When they put the rods in they use bone to fuse the vertebrae. They usually don't remove the rods as this is deemed unnecessary surgery, but even if they were removed the fusion would still hold. So that is why they would prefer to 'stop short' rather than go too far, it can't be undone.
                    I asked about the lung needing to be deflated. The Dr. said No! This does not happen often and is I think only if things are really bad or there are problems. When I asked he looked at me strangely as if to say 'why would you even ask that'.
                    I think that if it is possible you should get more than one opinion, even if you stay with the first Dr., but with curves over 50 degrees I would say surgery will be needed.
                    Amber had pain before her surgery. She says now that it is not as bad. She has good days and bad ones but says that it is more that she gets uncomfortable rather than being in pain.
                    The thought of any surgery is scary, but even more so when you are the one making the decision to put your child through it. Leading up to the surgery you will question yourself everyday about whether it is the right thing or not. I know some of the threads here are long (especially my main one) but spend time reading through all the posts here. There are so many positive stories. You will probably find many of your concerns shared by others. Don't forget though to ask more questions even ask them again until you are satisfied.
                    No-one is alone we all want to help.
                    Best wishes.
                    Cheryl.

                    Comment


                    • #11
                      thoracoplasty

                      hi cheryl
                      wow five girls! You must be busy! do any of your other children have scoliosis?
                      this whole thing is tough on them and they don't realize how tough it is on us. My daughter gets very angry about having scoliosis and never wants to talk about it. I don't think i can leave the decision up to her though to have the surgery or not because at this point it will just continue to progress into adulthood and she will need the surgery later and i think it is better to get it done now while she is still young. She refused to wear her brace to school and only wore it at night and this is what happened from it. I just worry that everything will go all right. It is a scary surgery. Do you think she was in more pain afterwards from have the thoracoplasty?? Thats funny that the dr. wondered why you asked about him having to deflate the lung. I did read that though and the thought of it was very scary.
                      thanks so much for writing. It really helps
                      Jennifer

                      Comment


                      • #12
                        jc3,

                        I am sorry your daughter is in denial about her back. Maybe in time she will see it is the right thing (surgery). Maybe talking to friends at school will bring her around.
                        We try not to talk about surgery unless she (my daughter) brings it up.
                        Anyway this is comfortable for a short while.
                        Are you going to do it during the school year?
                        Please don't think not wearing the brace has made her back this way.We have talked to a few Dr's about this (and read) the brace is very unproven and as you can see many people on this site have worn the brace for years and still need the surgery!
                        My daughter said she would've taked it off at school too.
                        Do you blame them? I probably would've too.

                        It is hard to make this surgery decision and like you we know there is no other way to fix it but still want other opinions.
                        I read about the deflated lung when an anterior was performed.
                        I thought a thoroplasty may require the same thing.
                        Ste's rib hump is obvious and our Dr's think some of this will improve as her spine is rotated.
                        She also has 1 cup size difference in her bra. because of this!!
                        I don't want to do the thoroplasty for cosmetic only.
                        They said it would not completely improve anyway.
                        I wonder if maybe that is a new technique and that's the reason.
                        Or if other Dr's do it bc this is a $business for them too.
                        Did any of you feel any pressure to do that part of the surgery?
                        She is already so skinny too.

                        Mumof5,
                        I'm glad you wrote long messages here, don't appologize for that.
                        I followed Amber's and your courage threw surgery and reread it along with others many times.
                        Did you as your Dr about the lung being deflated bc of my question? I,m sorry he gave you a strange look. I think we should be allowed to ask ANY questions with out being belittled!!
                        Its hard enough just to ask!
                        Iam glad Amber is getting back to normal, she must be a real trooper with all she has gone through.

                        Thanks again for this boards support, I don't know where I would be by now.

                        Carmel,
                        How is your daughter? Were you going to have her scoliosis checked? You are a strong mom too.
                        now 16 yr old daughter
                        with worsen 65 degree upper curve
                        surgery Nov 3, 04

                        Comment


                        • #13
                          I asked about the lung deflation before Amber's surgery. The Dr. was just like 'That's not a common thing to do' sort of wierd look, not a 'don't ask questions' type of look. He was a wonderful doctor to have, so was the one that assisted. They both answered some questions before I even thought to ask them. It doesn't hurt to ask questions of your doctors if it is concerning you, you need an answer. I feel that if the doctor is unwilling to answer anything that you ask even if it is a bit off the wall then you should look for another one. This is our childrens lives that we are dealing with and once its done you can't go back. You can also never have too much knowledge or information, even if it turns out not to be revelant.
                          My second daughter, Jordan 13, has just had a check-up and her curve is stable (hasn't changed in 6 months) at 15 degrees Lumbar. My third, Gabrielle 12, has a slight rotation. The Dr. that Amber sees in our home area has been keeping an eye on the whole family. Isabel 10, has no visable problems neither does 3 yr old Shayleigh.
                          Amber never had to wear a brace. Her curves progressed too quickly for it too have helped anyway. After reading here and asking questions of Dr's. I think that it really depends on the person as to the brace working or not. Age, reason for curve developing, progression rate etc makes a difference. It works for some not for others. But you can only do what you do and hope for the best.
                          I have asked Amber at different times during her recovery about how bad the pain is and where it is. She still has many 'numb' spots/areas but has always said that no one place is sorer than anywhere else. Her left shoulder area where she had the thoracoplasty does seem to get 'tired' easily, though she rarely has much pain.
                          I worried before the surgery about the amount of pain she would be in when she came home. I just couldn't understand how they could do all that to her, put her on morphine and then be home a week later on virtually no pain medication. But that's what happened. It was incredible. I look back now and wonder why I was so worried.
                          I find myself reading the posts here and storing up questions to ask the doctors. I think that even if it's not really to do with Amber, if I have found Dr's. that will answer any question, and I have the oportunity I will ask on behalf of other people, the Dr's haven't minded so far and maybe what I find out can make a difference to someone else. I hope so. The Dr's probably think I'm nuts, but I can live with that.
                          As a single parent I had no-one to share my concerns with. The people here really helped me keep it together and I felt that I could come here and get everything off my chest. It made me feel so much better knowing that I could write something and when I came back on someone would have offered support or answered a question. Wonderful.
                          The only problem I have now is getting Amber motivated to do some chores!!
                          Best wishes.
                          Cheryl.

                          Comment


                          • #14
                            thoracoplasty

                            sorry i haven't written back in a few days. thanks all of you for answering so many of my questions. Thursday is our appointment i will let you all know how it goes and what the surgeon says.

                            jennifer

                            Comment

                            Working...
                            X