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Thread: WARNING: if considering full spinal fusion, it may disable and end your life as mine.

  1. #31
    Join Date
    Apr 2010
    Location
    Easton PA
    Posts
    182
    Susan- Thank you for the info about P. Acnes. I was not aware that the bacteria would interfere with osteoblastic activity. Since some of my hardware remains, I would assume so does the P. Acnes and thats very concerning to me. I am also on cephalexin but was told I would be on it approx. 2 years. Was your surgeon concerned about adding new hardware because of the infection? I worry that if I do need any hardware replaced in the future the existing P. Acnes will prevent me from having it done.
    BTW, you have been through MORE than your share of complications! You always have a positive attitude which is admirable. I know as health care workers we may be more prepared for postop issues, as far as realistic expectations but I think neither of us had anticipated what we have been through. I certainly hope this surgery was your last!! I wish you a speedy, complication free recovery! Lori
    Lori in PA, 52 yrs. old
    T54/L72
    Surgery 6/7/11, T3-S1, all posterior, with pelvic anchors
    Gained 2 inches!
    Dr. Boachie, HSS, NYC
    12/10/13 Hardware Removal for infection
    Lost 2", gained PJK!

  2. #32
    Join Date
    May 2010
    Posts
    348
    Quote Originally Posted by mabeckoff View Post
    I understand what Ed is saying . When I had my first surgery in NC in 2010 and my surgeon messed me up badly , I did not know what I was going to do. I was in constant pain , tilting , had a spinal cord injury and was moving to CA. I was on so many narcotics trying to get through the day. I did meet Dr Bederman and many,many surgeries later and many years later , I am now the best that I am ever going to be. There is nothing more that can be done for my back and neck. I am fused from C2 to my sacrum . It is not an easy life. I am in pain and there are many things that I cannot do now. I do not dwell on those. I am trying to focus on the good in my life. Pain Management is really helping me and I am really hoping not to go back on narcotics again, except when I have surgery.

    I had to have scoliosis surgery . I do not like to think where I would be now if Dr Bederman and I had not met.

    Melissa
    . So how do you deal with pain Mellissa? You can PM me if you like, as I do not mean to hi jack this thread . Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  3. #33
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    Jul 2010
    Location
    Dubuque, Iowa
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    61
    Quote Originally Posted by TwinmomTN View Post
    I had full spinal fusion, T-3 to sacrum, after having 80 and 60 degree curves, with the renowned Dr. Lenke. Just because you have one of the best spinal surgeons does NOT mean that you will end up in LESS pain!!! I had this done 3 years ago and have regretted every second of every day since. I have tried EVERYTHINGA including Pain Management to no avail. I have severe chronic debilatitng pain constantly. It has ruined not only my life but the life of my husband and 2 children who are left without a mother. My life is over! Anyway,just felt obligated to inform any of you considering this surgery. Not all surgeries turn out rosey like most here post. AND IF I HEAR ONE MORE PERSON SAY THAT GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE I WILL SCREAM, BULLSHIT!!! Why do you think people commit suicide? They have had MORE THAN THEY CAN HANDLE! Period!
    I am just going to say.....wow, someone had the kahunas to actually put it out there. I haven't been on here in 4 months because this forum and peoples 'awesome' recovery stories upset me e-v-e-r-y time. This time was no exception, reading this caused me to burst into tears...I could have written it. I had surgery T-4 to sacrum in 2012 by the renowned Dr. Lenke...I am in constant pain, I am disabled at 43 years old...it has ruined my life. Scoliosis has ruined my life. Thank you for being honest...thank you for speaking for those of us that are just too damned tired...so tired.
    Spring
    42 yrs old
    Milwaukee braced 1983 to 1989
    was told my curves would never progress
    at 19yrs old 1991, T30-L38
    2010, T38-L56--progression in one year 2011, T40-L67
    new diagnosis-kyphoscoliosis, DDD, Arthritis, Osteoporosis, 73 degree Kyphosis
    Surgery 1-09-12....10 hrs all posterior T4-sacrum & 2 cages
    Dr. Lenke-St. Louis Mo.
    Surgery to clean out infection 2-10-12
    Revision for broken rods 1-23-14

  4. #34
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    3,263
    It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

    I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.
    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

  5. #35
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    Jan 2012
    Location
    Yacolt, WA
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    1,577
    Quote Originally Posted by JenniferG View Post
    It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

    I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.
    Jennifer, your comments really touched me and I appreciate your perspective/sentiment.

    My surgeons are very supportive of me and that has made my situation less frustrating for me. I also have a wonderful supportive family. Having said that, being disabled in a wheelchair or crutches was not what I had hoped for. I was 1 year & 5 months out from surgery and thought that I had won the "healthy postop back lottery" and had beat the odds of the spinal surgery lottery when I started to have symptoms of spinal cord injury. Still, I am able to get out into the community some and am very slowly improving.

    My heart goes out to Pam and Spring....and probably others who dropped off of the forum because of the continuing severity of their postop pain. I cannot imagine what they are going through. There must be some procedure to cut nerves or otherwise abate the severe pain. Prior to my last surgery, when I was in a lot of thoracic pain due to the lack of fusion, I asked Dr. Hart, "So, what happens if this does not help my pain?", he said something about, "then we could look at other surgeries on the nerves that are causing the pain". I did not ask him what that would entail.

    We are a community that supports each other and I hope that they can feel the support. There are some great pain management docs at university hospitals who must have something to offer.

    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. #36
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    May 2013
    Location
    Grove City, OH
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    275
    Quote Originally Posted by JenniferG View Post
    It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

    I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.
    Well said, Jennifer.
    Those of you with painful outcomes are frequently on my mind.
    Please know that You are supported in my prayers every day for pain relief and healing solutions: Susan, Melissa, Pam & Spring.
    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!

  7. #37
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    Jun 2011
    Location
    Southern CA
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    Quote Originally Posted by JenniferG View Post
    It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

    I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.
    That is the way that I felt with my NC surgeon. I know that something was wrong but he would not admit it . My surgery was in May of 2010 and finally inMarch of 2011 he said that I had a broken rod.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #38
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    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
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    Thanks Susan, I'm so glad you have felt the support. I feel it's incredibly important. The question was probably too personal, but I think you confirmed what I've been thinking, that it would be so much worse if you felt abandoned, not listened to, or not cared about by those charged with caring for you.

    I'm so glad that things are improving for you Susan.

    Melissa, I'm sure many of us here have cried tears of frustration for you after that first surgery. You've always been incredibly restrained in your remarks about that surgery which caused you such harm and misery. You have been to hell and back because of it.

    So happy that since being in California, you've had caring medicos and at last you're getting some help with the pain. It must give you hope.
    Last edited by JenniferG; 06-20-2015 at 04:32 AM.
    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

  9. #39
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    818
    I agree with the statement of feeling abandoned. I am feeling that from my spine team. I was not heard about the shoulder blade problem leading of of my thoracic fusion. 4 years of it. I did do PT but now we are past that. As this more complicated problem developed, I turned to the spine doctors for help. I was sent to the University but as that was occurring, my original doctors actually got angry at me for asking them to look over the CT scan the university doctor ordered. It was so unprofessional and disheartening. But, I now have a treatment plan and surgery scheduled on June 29. Hopefully it is in time to recover proper shoulder movement but this has been happening over 4 years.
    It makes me feel that I can not trust my original doctors to listen and care. Too bad.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  10. #40
    Join Date
    May 2008
    Location
    reno,nevada
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    3,973
    Quote Originally Posted by mabeckoff View Post
    As most of you know, I have a lot of hardware in my back. I was told that I qualify for Spinal Cord Stimulation Pain Relief. It took going to several different Pain management Doctors. Dr Bederman feels that I am an excellent candidate for this . So I urge people to look into it. The one that I choose will allow me to have MRIs in the future as well.

    Melissa
    Melissa, after reading about MDA and the discontinuation of the Las Vegas telethon, I was reading about Jerry Lewis and his health. He had a spine injury in 1965, was addicted to Percodan for 13 years then quit in 1978. He is the spokesperson for Medtronic’s neurostimulator. I had no idea about these devices....

    https://en.wikipedia.org/wiki/Jerry_Lewis

    http://www.medtronic.com/patients/ch...vice/index.htm

    Benefits and risks
    http://www.medtronic.com/patients/ch...isks/index.htm

    http://www.medtronic.com/patients/ch...ries/index.htm

    Do you know which device you are getting? and when is this happening?

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #41
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    I have been reading the posts on this thread since it was started and felt the need to apologize and sympathize. I am one who "painted a rosy picture" of my recovery. I was being absolutely truthful and realize that I have been extremely fortunate, so far. It s truly heartbreaking to read how so many are in constant pain. I met Linda and Spring in Dr. Lenke's office and have corresponded with them. When your surgeon is one of the best, we all expect a good outcome. I really believed that Dr. Lenke couldn't possibly have a patient that wouldn't be thrilled with the results. I am so sorry that I may have been an influence on anyone who now regrets having had this major surgery based upon my frequent posts a few years ago of a smooth recovery. I needed to read the positive posts on the forum before my surgery 4 years ago, but definitely see the need for a thread like this so that people are aware of unfortunate outcomes as well.
    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/

  12. #42
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    Jun 2011
    Location
    Southern CA
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    Quote Originally Posted by titaniumed View Post
    Melissa, after reading about MDA and the discontinuation of the Las Vegas telethon, I was reading about Jerry Lewis and his health. He had a spine injury in 1965, was addicted to Percodan for 13 years then quit in 1978. He is the spokesperson for Medtronic’s neurostimulator. I had no idea about these devices....

    https://en.wikipedia.org/wiki/Jerry_Lewis

    http://www.medtronic.com/patients/ch...vice/index.htm

    Benefits and risks
    http://www.medtronic.com/patients/ch...isks/index.htm

    http://www.medtronic.com/patients/ch...ries/index.htm

    Do you know which device you are getting? and when is this happening?

    Ed
    I will discuss this on my thread
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  13. #43
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    Jun 2011
    Location
    Southern CA
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    2,245
    Quote Originally Posted by babyboomer16 View Post
    . So how do you deal with pain Mellissa? You can PM me if you like, as I do not mean to hi jack this thread . Linda
    I will discuss this on my thread
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  14. #44
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,952
    The best surgeons probably have more bad outcomes than many surgeons. When one takes on the riskiest cases, they're going to have some bad outcomes. Chances are, if you have a bad outcome from surgery with one of the top doctors, you might have had a bad outcome regardless of who did the surgery.

    Instinctively, we think that if we have pain, there has to be a mechanical reason for it. And, maybe there is. But, if someone like Dr. Lenke can't find it, there's not much that can be done. I'm sure that's no consolation if you're one of the really unfortunate people who have to live with that reality.

    --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

  15. #45
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,185
    I have been reading this thread and wanted to say how sorry I am for people still in pain after surgery.

    Are you saying you have more pain than you did prior to surgery? That is, was not having surgery an actual option that you could have taken in terms of pain?

    The pain doctors need to do more work on this. There is too much suffering.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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