Page 1 of 2 12 LastLast
Results 1 to 15 of 23

Thread: Years after surgery

  1. #1
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554

    Years after surgery

    Reading all these posts about everyone having problems years after their spinal fusions is frightening. It seems like everyone has some kind of problem with their rods breaking down the road. My daughter is 15 and just had a spinal fusion in November and reading all these posts has me so worried about what the future holds for her years down the road. Does everyone's rods break years after their surgery?? I'd love to hear from people who have had success stories years after their spinal fusions.
    Jennifer

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Jennifer...

    I believe that the reason it seems like everyone has trouble is that the people who don't have problems usually just go on with their lives, and don't need forums such as this. I've been involved in scoliosis support groups for more than 15 years. I can tell you that the vast majority of people who have surgery, lead almost completely normal lives.

    I have links to abstracts on scoliosis surgery outcomes on my website:

    http://www.scoliosislinks.com/Outcomes.htm

    The newer generation of scoliosis implants hasn't been around very long, but it appears that the vast majority of patients will have good long-term outcomes.

    Regards,
    Linda

  3. #3
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    Thank you Linda for making me feel better. It is horrifying reading all these posts on the revision board. I don't know why i torture myself even going on that board and ready all these stories, but every now and then i take a peak and then regret that i did. I just hope my daughter is one of the success stories later on. It is truly scary thinking about the things that can go wrong. So far so good though.
    thanks again
    Jennifer

  4. #4
    Join Date
    Feb 2004
    Location
    New Zealand
    Posts
    108
    Hi Jennifer:

    I think you can also console yourself with the fact that the technology used for fusion with instrumentation has improved a lot in the decades since the people now needing revision had their original surgeries. It may well be that by the time our daughters are middle-aged, the rate of hardware problems will be lower than it is now.

    (You know, I'd been hoping that once Caitlin's surgery was done, the worrying would be over. Sigh. I guess for a Mum, the worrying is never over....)


    Cheers.
    Patricia
    Scoli Mum from New Zealand
    Daughter Caitlin's surgery 2nd May 2005
    Posterior fusion T3 - L1

  5. #5
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    Patricia
    Thanks for responding from all these positive e-mails i am definitely starting to feel better, thanks.
    Good luck with your daughters upcoming surgery and it's true once the surgery is over there are different worries now. But your daughter will do fine, i was so stressed before the surgery, but the recovery for my daughter was not as bad as i thought it was going to be. The anxiety waiting for the surgery was the worst part.
    Jennifer

  6. #6
    Mary Lou Guest
    Jennifer,

    Here's a suggestion for you: ask your doctor if he could give you names/phone numbers of previous patients. That way, maybe you could talk to some people who have not only had the surgery done years ago, but also by the same doctor.

    Another option is to have the rods removed after a year or so. Jamie and I have discussed this and we don't want her to have another surgery unless it is absolutely necessary. Her doctor mentioned to us early on that because she is so thin, she might be able to feel the rods when leaning back on a chair and may want to have them removed.

    Try not to worry. I know it is hard and it does seem like a lot of people are having problems, but like Linda said, most people are on this forum looking for help and support. Also, if you notice, a lot of the people having problems have Harrington rods, which I don't think they use any more.

    Mary Lou

  7. #7
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    hi marylou
    thanks for writing. I don't think i would want her to have those rods removed unless later on they cause a problem. I wouldn't want to put her through that again and i don't think i could go through that again. It seems like these people who are having their rods removed due to breakage later on, do they get rods put back in?? And if so i wonder why.
    My problem is i read to much. But like linda said and i'm sure it is true, the people who come on here are the ones with problems, the ones that are fine don't bother hanging around here.
    My daughter always says to me why are you still on those boards, it's over mom.
    She has been bothering me about things she wants to do, so this is getting tough. The other day she was home and alot of the younger kids on the block were playing "manhunt", i guess it's like tag, but a new name, anyway she said she was going to go play, thank goodness she never ended up going out, but i told her she couldn't. She thinks she could. I have to call the dr. i think and ask him a few questions about her resrictions. I can't imagine her playing gym next year i will be very nervous, she said she will too.
    how are you guys doing?
    Jennifer

  8. #8
    Mary Lou Guest
    Jennifer,

    We are doing great, thanks for asking. I was very nervous a few weeks ago, as my youngest daughter was turning 12-the age Jamie was when diagnosed. Our doctor gave her a very good check-up and assured me there was no sign of curving. I hope she stays that way, as she hasn't started her period yet. Jamie is going crazy right now and at time is very upset about her restrictions. We've talked a lot lately about whether or not our timing was good or bad. We had discussed waiting until summer, but as you know we opted for surgery in December. Deep down I know she is happy the surgery is behind her, but it is still hard. Her school band is going to an amusement park next month and she can't go; when you are an eighth grader and on the honor roll for the past three marking periods, you get to go to another local amusement park-she was and isn't allowed to go; she was worried that she wouldn't be allowed to go to Washington D.C. for her class trip and asked me to call the doctor-I didn't call the doctor and she is going, but I have volunteered to go along and if I can't, I will be a nervous wreck untils he gets home! I trust her to stay within her restrictions, but it will be a very long day. Our family does a lot of outdoor activities, so it is hard for her not to be able to do most things, but we've discussed her just facing surgery now and missing out on everything this summer, starting high school with her weight restrictions, no gym for sure, etc. that she is under right now and she is happy that she had the surgery when she did.

    All in all, she is doing great.

    Mary Lou

  9. #9
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    hi marylou,
    glad to hear everything is going well! I know it is hard on them with these restrictions in place for so long, especially when they are feeling that they can do things and they're not allowed. Our nicole wanted to wait for the summer also, but when her curve was getting worse go quickly i didn't want to wait and i just wanted it over with and i'm glad that it is done already and i think it would be worse to just be recovering in the summer. At least now i won't be so much of a wreck when she goes swimming or to the beach, i think if she did it in the summer the whole summer would basically be ruined for her. I'm sure if jamie goes to washington without you she will know her limitations. They seem to know what they can do and can't do. I don't blame you for wanting to go also. I remember the first night i let nicole sleep at a friends for the night after the surgery, i was a wreck, she was fine though. About the walking in Washington, my nicole has been walking alot with her friends and they walked to "friendlys" for lunch the other day and it is about 2 miles and i thought that her back would have bothered her and she said it was fine.
    well keep in touch
    Jennifer

  10. #10
    Join Date
    Apr 2005
    Location
    NJ
    Posts
    8

    Smile

    Hi, Jennifer!

    Patricia is right - they have a different way to do the surgery now, so your daughter's success rate will probably be much better than ours.

    I had my surgery almost 25 years ago and I have to say, the biggest problem I have had is that when I sit for too long, my lower back is stiff. Usually, just lying flat on the floor for a few minutes will help that.

    I do have a suggestion for you. Between talking to a doctor and surfing the internet and talking to women around my age (41) who had the surgery 20 something years ago, it seems that the best thing for the scoliosis patient is to stay fit and slim. Stress to your daughter the importance of staying healthy as an adult. She should be exercising as she ages, eating right and drinking plenty of milk. Smoking also hurts the bones and our spines don't need anymore stress added to them. I think the key for my back's success has been the fact that I have ALWAYS kept my weight down. Added weight puts too much stress on the spine.

    I hope this helps you!!!

    Suzanne
    in New Jersey :-)
    45 Degree curve, Harrington rod place in 1980 by Dr. Keim at Columbia-Presbyterian, NYC.

  11. #11
    Join Date
    May 2004
    Location
    Houston, Texas now live in Colorado Springs, CO
    Posts
    543
    Hi Jennifer and Mary Lou, You guys made a good choice in having the surgery for your daughters when you did. This will be my third summer that is messed up due to surgeries. Two years ago it was for a hysterectomy, last april A/P surgery, this June an osteotomy. The last two summers were bad enough but this year both my kids will be gone. Our daughter got married last August and moved to Denver and our soon to be 20 year old son is going to Maine to work at a boy's camp as the climbing wall instructor. I think it's going to be a very long boring summer. Your girls will be able to enjoy just about everything this summer and summer time is so important to kids and their friends. They sound like they are doing great!

    Jennifer, like the other person said, this new instrumentation is suppose to help stop all those problems that they had with the Harrington rods. My next surgery for the osteotomy was actually considered during my first spine surgery. But beings as I had so much work done already and so much time was involved and my balance would only be off a little bit they were hoping that my body would compensate for it. Basically I look like I have flatback, but the doctor said technically I don't because of the way that I was fixed. Somewhere my sagittal balance is off. I think your daughter is going to be fine. I know what you mean about reading everything, I like to know everything that could possiblly happen now and in the future. The only problem is we have to try not to dwell on it. If something happens you deal with it then and for now enjoy life with your daughter and the rest of your family.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

  12. #12
    Join Date
    Apr 2005
    Posts
    29

    I don't know if I can help as I am looking myself

    Hi, I noticed some wonderful encouraging replies to this post. I can only say that maybe my web site might be able to give you some small idea of what I am quite sure no one will ever have to go through again since the new advances scoliosis treatment.www.FrankieBush.net however, for myself I am still looking for that right scoliosis reconstruction surgery that might be able to help me. If anyone has any referrals, advice or suggestions, please check out my web site and let me know, I would be greatly appreciative, as I hope my web site also give all of you some answers.www.FrankieBush.net I wish you the very best, Frankie

  13. #13
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    suzanne, theresa, marylou and everyone else who replied to my post. I just want to thank you all so much for your encouraging words. You have all made me feel more confident in the newer technology and theresa you are absolutely right just enjoy now that everything is going well and not to think about the what if's. I should try and keep my nose out of the revision board.

  14. #14
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    frankie
    i am sorry you have not been able to find the right dr. to help you out. I know Linda from the board here is very knowledgable about scoliosis and always has very good recommendations for people for revision specialists. I would ask her to help you out. I think you are in Vegas, I am in new york and i know there are many very good revision specialists in new york. My daughter has surgery by Dr. Boachie - hospital for special surgery, new york and i think he has a very good reputation with revision surgeries, but i would ask linda to help you find someone by you.
    good luck
    Jennifer.

  15. #15
    Join Date
    Apr 2005
    Posts
    5
    Jennifer,

    Hi, I am new here but I am 22 and had my surgery ten years ago with no problems. I agree with Linda that these are only a handful of patients out of thousands who have had problems. In my case they took part of my hip bone to fuse the rod to the spine and now they don't do that. Technology is always changing and improving and I am sure your daughter will be just fine.

    Good Luck

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •