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

Thread: Time to face up to it

  1. #1
    Join Date
    Jul 2008
    Location
    west midlands, UK
    Posts
    152

    Time to face up to it

    I have posted before about my continued pain issues and the possibility of hardware removal. I've had all the tests I can have and everything looks okay. My surgeon can only suggest removal. I've got my 3 year post op check in January so I think its time to take that step. Christmas has always ment extra pain for me and this one is no different, I hate to say it but I'm in more pain with preparations this year than I was last year so its obvious what needs to be done. I'm pretty sure its the metal because the pain is in a specific area-in the centre where I have a bunch of protruding screws. I've put it off because it all has to come out and that fills me with worry but I know i have to focus on the future and I can't continue with this pain.

    There doesn't seem to be many people who have had hardware removal which does make me ask why me, why can't my body just accept it. Its frustrating because when I had this surgery I never dremot I would be having to make the decision to have more.
    Fused T2-L4 with costoplasty on 3/11/10

  2. #2
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    I truly feel for you. I know that having gone through this major surgery once, that I never want to have revision surgery, however, like you said, it might be "time to face up to it." Many on this forum are extremely pleased with their revision surgery and feel much better afterwards. I am hoping for the best for you!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Hi bluestone, as long as I've "known" you on these forums, you've been struggling with pain. I am so sorry this has been your outcome and I hope the removal of your hardware gives you the pain-free life you've been waiting for. I remember my surgeon saying hardware removal is unusual but not nearly the huge surgery of putting them in. You should be well and truly fused now. Hope 2014 turns out to be a great year for you.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  4. #4
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Bluestone - I just want to say I'm thinking of you & praying for lessening pain during Christmas. I'm glad you have support of this forum!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  5. #5
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,598
    Bluestone, sounds like you have come to a conclusion that will hopefully help you. I feel lucky that my fusion went well and that I have just some random pains which can be generally tolerated. Having spinal fusion surgery is a craps shoot, sometimes it goes well, other times it does not.

    You are in my thoughts and prayers that you find some relief and hat you can have an active life.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  6. #6
    Join Date
    Jul 2008
    Location
    west midlands, UK
    Posts
    152
    Thank you all for your kind words, I don't know what I would do without support from people who truly understand. I feel as though I'm going through the biggest dilemma ever! Most days I'm pretty happy, I have a good life, I take care of my animals and I crochet for my online shop. On the 'ordinary' days I can cope with the level of pain I'm in-its those not so 'ordinary'' days that shoot my pain levels up. If I had to go out to work the push to get this done would be greater but I can rest when I want, I lie down most afternoons. BUT I have to think about the future, one day when (if) I become a grandmother I want to be an active grandmother, I don't want pain to limit my life. I got an amazing correction for which I'm truly grateful for so I just pray that my fusion is good. I just hate the thought of having my back cut open again and I fear that by having a second surgery I could be risking even further surgery-I fear so much!
    Fused T2-L4 with costoplasty on 3/11/10

  7. #7
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,598
    Quote Originally Posted by bluestone View Post
    Thank you all for your kind words, I don't know what I would do without support from people who truly understand. I feel as though I'm going through the biggest dilemma ever! Most days I'm pretty happy, I have a good life, I take care of my animals and I crochet for my online shop. On the 'ordinary' days I can cope with the level of pain I'm in-its those not so 'ordinary'' days that shoot my pain levels up. If I had to go out to work the push to get this done would be greater but I can rest when I want, I lie down most afternoons. BUT I have to think about the future, one day when (if) I become a grandmother I want to be an active grandmother, I don't want pain to limit my life. I got an amazing correction for which I'm truly grateful for so I just pray that my fusion is good. I just hate the thought of having my back cut open again and I fear that by having a second surgery I could be risking even further surgery-I fear so much!
    It would be great if you could both do and not do surgery....and then you could see the results and then know for sure what you want. I used to counsel women who were deciding whether to have an elective surgical procedure. I would say that the best way to decide is to have you and your twin sister both have the same problem, one of you have the surgery and the other one not have surgery, and then look out 20 years and see how each person is doing in life.

    Wouldn't it be great if there were guarantees with surgery? If so, you wouldn't have the pain that you do and I wouldn't have my incisional hernia! Life isn't fair! My surgeon was outstanding and when I sent her an email to tell her about my hernia, she told her nurse to tell me that it probably wasn't a hernia, that it was common for people postop to have a small bulge. I laughed as I looked down at my belly button that was on my right side and my left lower abdomen was bulging out when I laughed! I did not respond to her, but showed her my hernia at my 6 month checkup.

    Yes, grandmothers need a lot of energy. I have 4 grandchildren.

    Do you have confidence in your surgeon? Susan
    Last edited by susancook; 12-25-2013 at 04:22 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  8. #8
    Join Date
    Jul 2008
    Location
    west midlands, UK
    Posts
    152
    Quote Originally Posted by susancook View Post
    It would be great if you could both do and not do surgery....and then you could see the results and then know for sure what you want. I used to counsel women who were deciding whether to have an elective surgical procedure. I would say that the best way to decide is to have you and your twin sister both have the same problem, one of you have the surgery and the other one not have surgery, and then look out 20 years and see how each person is doing in life.

    Wouldn't it be great if there were guarantees with surgery? If so, you wouldn't have the pain that you do and I wouldn't have my incisional hernia! Life isn't fair! My surgeon was outstanding and when I sent her an email to tell her about my hernia, she told her nurse to tell me that it probably wasn't a hernia, that it was common for people postop to have a small bulge. I laughed as I looked down at my belly button that was on my right side and my left lower abdomen was bulging out when I laughed! I did not respond to her, but showed her my hernia at my 6 month checkup.

    Yes, grandmothers need a lot of energy. I have 4 grandchildren.

    Do you have confidence in your surgeon? Susan
    I had a suspected hernia in my groin, I was convinced it was a hernia but at my 3 month review my surgeon said it may settle. A month later I showed it to my GP-he actually thought I had a double hernia-one each side of my groin and referred me to a specialist. He examined me and said it was a hernia and that he would operate when I felt ready. Thank goodness I waited because it disappeared, I'm not sure at what point it did but I looked down one day and it had gone so my surgeon was right.

    I do trust him, he's been so right about many things during my recovery and I'm sure he's offering metalwork removal because he knows the screws are very protruding. If I could have just the screws removed the decision would be much easier. I think without my hardware I will be for ever checking my back again.

    I've got a twin brother-no scoliosis for him though
    Fused T2-L4 with costoplasty on 3/11/10

  9. #9
    Join Date
    Mar 2010
    Posts
    2,769
    Bluestone,

    First of all I will tell you that I have not had surgery at this point. With that said, my surgeon told me that if the day comes where I do have surgery, I will be committing myself to two surgeries. He said that I would NEED hardware removal after the fusion was complete. So, some of us are just different. I have a dear DIL who, in my opinion will need hardware removal. She hasn't come to that place in her mind, yet, because of the traumatic memories of having the surgery. She absolutely doesn't want another surgery. With that said, she's very young and her pain is ever increasing to where she needs daily meds AND she has a place where the surgeon left the rod too long and it's not attached to anything. This piece is protruding and can be felt through the skin. Her muscle is always inflamed there and the skin around that area is often pink from the constant irritation.

    So, while this isn't an easy decision by any means. I'm definitely not trying to downplay this because of the struggles I see firsthand in my DIL. I hope that this gives you the needed relief. Living with constant back pain, as many of us do, is debilitating to say the least. I have one grandchild. I have to FORCE myself to do things with him sometimes because I just hurt. It's not as enjoyable as it should be. Right now my only options are injections. Your problems seems fixable, hopefully, especially if your pain is right where you have protruding hardware. I'm assuming you are thin. My doctor said that this is a problem with very thin people, as I am thin, too. He also said that by far, the most "revision" surgeries he does are hardware removal. So I hope this has given you a little confidence boost that you are by no means abnormal for needing this. I wish you all the best!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  10. #10
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,598
    Oh, Bluestone, I hope that I wake up and my hernia is gone. The surgeon did an ultrasound and he said that the entire length of the ALIF incision was open. If it would self-heal, I would be very, very happy!
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  11. #11
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,120
    Quote Originally Posted by rohrer01 View Post
    Bluestone,

    First of all I will tell you that I have not had surgery at this point. With that said, my surgeon told me that if the day comes where I do have surgery, I will be committing myself to two surgeries. He said that I would NEED hardware removal after the fusion was complete. So, some of us are just different. I have a dear DIL who, in my opinion will need hardware removal. She hasn't come to that place in her mind, yet, because of the traumatic memories of having the surgery. She absolutely doesn't want another surgery. With that said, she's very young and her pain is ever increasing to where she needs daily meds AND she has a place where the surgeon left the rod too long and it's not attached to anything. This piece is protruding and can be felt through the skin. Her muscle is always inflamed there and the skin around that area is often pink from the constant irritation.

    So, while this isn't an easy decision by any means. I'm definitely not trying to downplay this because of the struggles I see firsthand in my DIL. I hope that this gives you the needed relief. Living with constant back pain, as many of us do, is debilitating to say the least. I have one grandchild. I have to FORCE myself to do things with him sometimes because I just hurt. It's not as enjoyable as it should be. Right now my only options are injections. Your problems seems fixable, hopefully, especially if your pain is right where you have protruding hardware. I'm assuming you are thin. My doctor said that this is a problem with very thin people, as I am thin, too. He also said that by far, the most "revision" surgeries he does are hardware removal. So I hope this has given you a little confidence boost that you are by no means abnormal for needing this. I wish you all the best!
    Any idea of why they think you absolutely need to have the implants removed? I've never heard of that before.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  12. #12
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,598
    Rohrer, I know that you may have explained this before and I may have misread your entry, but if you have a scoliosis/spine problems and are in a lot of pain, why are injections your only option? Why isn't surgery an option? Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  13. #13
    Join Date
    Jul 2008
    Location
    west midlands, UK
    Posts
    152
    Quote Originally Posted by rohrer01 View Post
    Bluestone,

    First of all I will tell you that I have not had surgery at this point. With that said, my surgeon told me that if the day comes where I do have surgery, I will be committing myself to two surgeries. He said that I would NEED hardware removal after the fusion was complete. So, some of us are just different. I have a dear DIL who, in my opinion will need hardware removal. She hasn't come to that place in her mind, yet, because of the traumatic memories of having the surgery. She absolutely doesn't want another surgery. With that said, she's very young and her pain is ever increasing to where she needs daily meds AND she has a place where the surgeon left the rod too long and it's not attached to anything. This piece is protruding and can be felt through the skin. Her muscle is always inflamed there and the skin around that area is often pink from the constant irritation.

    So, while this isn't an easy decision by any means. I'm definitely not trying to downplay this because of the struggles I see firsthand in my DIL. I hope that this gives you the needed relief. Living with constant back pain, as many of us do, is debilitating to say the least. I have one grandchild. I have to FORCE myself to do things with him sometimes because I just hurt. It's not as enjoyable as it should be. Right now my only options are injections. Your problems seems fixable, hopefully, especially if your pain is right where you have protruding hardware. I'm assuming you are thin. My doctor said that this is a problem with very thin people, as I am thin, too. He also said that by far, the most "revision" surgeries he does are hardware removal. So I hope this has given you a little confidence boost that you are by no means abnormal for needing this. I wish you all the best!
    Thank you for your reply, it makes me feel a bit less of a 'failure' because that's how I've been feeling. So many people keep their hardware in that it makes me feel like I've failed in some way needing to have it all removed. My surgeon has said many times that I have zero fat on my back. I'm not thin-size 10-12 but my back is literally skin and bone. I do know of thin people though who have no problems with their hardware. I don't know whether some people's hardware is sunken in deeper, maybe a question to ask my surgeon but I am certain that it is only the protruding screws causing the pain. He told me my curve was extremely stiff and that to get it as straight as he did he used big screws 'bunched up' which is probably why I'm having a lot of pain there.

    I just wish there were posting from people who have had hardware removal and felt much better for it.

    I hope your DIL finds the strength soon to have her hardware removed. Your right you know when you have reached that 'place' in your mind to go through another surgery. I'm still not 100% that I have but I see my surgeon on 6th Jan for further discussions.
    Fused T2-L4 with costoplasty on 3/11/10

  14. #14
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi bluestone,

    there have been a few people over the last 5 years here that I can recall who had hardware removal. I am trying to find links to their posts. Here is one link with two folks who had their hardware out:

    http://www.scoliosis.org/forum/showt...ware%2Bremoval

    Hope this is helpful. Where is that crystal ball when you need it.

    Another option to gain info would be to ask your surgeon for the contact info of any other patients of his who have had hardware removal, so you could talk with them directly. Good surgeons will provide this sort of info if they have it.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  15. #15
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi bluestone,

    there have been a few people over the last 5 years here that I can recall who had hardware removal. I am trying to find links to their posts. Here are are links with folks who had their hardware out:

    http://www.scoliosis.org/forum/showt...ware%2Bremoval

    http://www.scoliosis.org/forum/showt...rdware+removal

    Hope this is helpful. Where is that crystal ball when you need it.

    Another option to gain info would be to ask your surgeon for the contact info of any other patients of his who have had hardware removal, so you could talk with them directly. Good surgeons will provide this sort of info if they have it.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

Posting Permissions

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