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

  1. #16
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    BTW, just read that 39% of adults with corrective spinal surgery end up PJK!

    Shocking to discover that such a large percentage end up with PJK! Wow, wish I had known this prior to surgery. Guess I need to clarify, this is adults > 59. But still shocking to me.
    Last edited by TwinmomTN; 06-08-2015 at 09:08 PM.
    Pam, age 49
    Thoracolumbar curves 80 and 40 corrected to 20 degrees
    April 20, 2012 surgery with Dr. Lenke
    T-3 to sacrum

  2. #17
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    Pam- No I did not have the hardware replaced. Dr. Boachie said all the fusions were solid, but did warn that the first several months I would be at risk for fracture as I needed to produce more bone to fill in the holes left from removing the hardware. I was very surprised to end up with PJK since I am fused all the way up to T3. Yes, there are many things I wish I would have been aware of pre-op, but I've learned to stop dwelling on it and try to focus on accepting who I am now. You are right, it is not easy and can be very lonely. I'm available any time you need to vent.
    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!

  3. #18
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    Jun 2011
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    Southern CA
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    What is PKJ?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  4. #19
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    Apr 2010
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    Easton PA
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    Quote Originally Posted by mabeckoff View Post
    What is PKJ?
    Melissa- Its proximal junctional kyphosis.
    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!

  5. #20
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    Jul 2011
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    Nashville, TN
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    How does one know there is infection in hardware, btw?

    Lori, how did you know that there was infection in the hardware, btw?
    Last edited by TwinmomTN; 06-09-2015 at 09:44 PM.
    Pam, age 49
    Thoracolumbar curves 80 and 40 corrected to 20 degrees
    April 20, 2012 surgery with Dr. Lenke
    T-3 to sacrum

  6. #21
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    Apr 2010
    Location
    Easton PA
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    Quote Originally Posted by TwinmomTN View Post
    Lori, how did you know that there was infection in the hardware, btw?
    It was pretty much process of elimination. Everything else was normal so my Dr. suspected a P. Acnes infection which is becoming more and more of a problem with implanted hardware. It lives in a biofilm around the hardware and is of low virulence so the only symptom is usually continued pain with no obvious cause. It was a gamble taking it out, and I'm sorry I did. The pain hasn't changed but my back has. Its possible to live with a chronic P. Acnes infection (its the same bacteria that causes acne). The MRSA they felt was a contamination after removal since I would have been very sick if I had an active MRSA infection for 2.5 yrs. But, because it grew out on culture I had to be treated for it. I have worked in healthcare for almost 40 years, so it is possible that I am colonized with it.
    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!

  7. #22
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    Oct 2014
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    Arizona
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    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!
    You are one of us and your story could be the story of each and every one of us. I'm really glad you decided to post as outcomes fall on a spectrum and your outcome is needed for a complete picture. I am most sorry for your isolation. Please come back and post again.

    As far as your comment re: suicide, people turn to suicide when they feel hopeless. I don't even know if it is even within somebody's power to not feel hopeless, it's a brain chemistry thing and some people are more at risk for it than others. But the anti-depressant drugs seem to work pretty well for many people - I wish more people would find a good psychiatrist and get the help they need when things are headed down that road. I do want to say though, that it bothers me when on this forum, people are encouraged to stop taking pain medications. I think the decision to cut back or stop pain meds is a very personal one and I think it is hurtful when you are in pain and made to feel like you shouldn't be taking pain meds. I really worry that the mis-use of pain meds for recreational purposes is making these drugs harder to get for people that really need them and that is just terrible. I feel very strongly that if pain meds make your life tolerable and increase your quality of life because it allows you to be more active - that's a good thing. Of course they have their drawbacks but these are most apparent to the people taking them - they don't need to be reminded.

    It's one thing when people are wanting to wean off pain meds and ask for advice, but it's not a contest to see who can stop the soonest. Sorry for the rant.

    I really do hope you can find some relief. Please share anything that you find is helpful.
    Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
    ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
    Fused T-7 to S-1 with pelvic fixation

    After 38* lumbar

    Xrays
    Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

    After: http://www.scoliosis.org/forum/attac...6&d=1424894360

  8. #23
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    Aug 2010
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    Florida
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    Pam, thank you SO much for posting this, it is important!

    Sometimes I wonder if I am not being stupid to keep turning away from surgery, with my big curves, ugly rib hump, significant documented progression (although it has stopped for now) and various pains. But the fact is, bad stuff can and does happen, no matter how expert the surgeon and we all need to know that going in. It is horrific surgery, a tremendous assault on the body. Our spines are opened up, broken, chiseled, drilled, screwed full of hardware, crowbarred into new shapes and positions, muscles cut, hours under anesthesia. Virtually everything is disturbed, most critically ALL the nerves. It is not a thing to take lightly. And at the end of it, a body reshaped into something we then have to learn all over how to live in, how to manage our lives physically without the ability to bend or twist, a body that feels unnatural, however much better it may appear on the outside.

    I will continue to work my Schroth program (suggested by my excellent surgeon, by the way, I know there are Schroth-trashers on this forum, but it has helped me) and stay in the best shape I can, and hope I can hold my ugly but functional shape without taking this most drastic step. But if I do, I will be fully warned.

    Your sharing of your experience is very much appreciated.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  9. #24
    Join Date
    May 2010
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    348
    Quote Originally Posted by Lizardacres View Post
    You are one of us and your story could be the story of each and every one of us. I'm really glad you decided to post as outcomes fall on a spectrum and your outcome is needed for a complete picture. I am most sorry for your isolation. Please come back and post again.

    As far as your comment re: suicide, people turn to suicide when they feel hopeless. I don't even know if it is even within somebody's power to not feel hopeless, it's a brain chemistry thing and some people are more at risk for it than others. But the anti-depressant drugs seem to work pretty well for many people - I wish more people would find a good psychiatrist and get the help they need when things are headed down that road. I do want to say though, that it bothers me when on this forum, people are encouraged to stop taking pain medications. I think the decision to cut back or stop pain meds is a very personal one and I think it is hurtful when you are in pain and made to feel like you shouldn't be taking pain meds. I really worry that the mis-use of pain meds for recreational purposes is making these drugs harder to get for people that really need them and that is just terrible. I feel very strongly that if pain meds make your life tolerable and increase your quality of life because it allows you to be more active - that's a good thing. Of course they have their drawbacks but these are most apparent to the people taking them - they don't need to be reminded.

    It's one thing when people are wanting to wean off pain meds and ask for advice, but it's not a contest to see who can stop the soonest. Sorry for the rant.

    I really do hope you can find some relief. Please share anything that you find is helpful.
    Lizardacres, Thank-you for being so compassionate for the people that are trying to have some quality of life in the best way possible. Whether it be narcotics or anything that helps. The people that live with this pain should never be told to wean off of their medication, or suggest they wean off it and try other means.
    I know that the last resort for some of these people have been pain pumps, which is another surgery. but one of our forum people was told because of the medal from the bottom sacrum on up to the neck, they weren't elegable because of the fact it he medal would create a bigger chance of infection. They connect the tube for the pain pump medicine directly into the spine . So there's not a lot of options going on for some of these people. Anyway, thanks for your standing up for the people with failed surgeries that have left them in pain. They don't need to feel guilty for taking anything that helps them get through the day. Warmly, 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

  10. #25
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    Jun 2011
    Location
    Southern CA
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    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

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  11. #26
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    Jan 2012
    Location
    Yacolt, WA
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    Quote Originally Posted by Lorz View Post
    It was pretty much process of elimination. Everything else was normal so my Dr. suspected a P. Acnes infection which is becoming more and more of a problem with implanted hardware. It lives in a biofilm around the hardware and is of low virulence so the only symptom is usually continued pain with no obvious cause. It was a gamble taking it out, and I'm sorry I did. The pain hasn't changed but my back has. Its possible to live with a chronic P. Acnes infection (its the same bacteria that causes acne). The MRSA they felt was a contamination after removal since I would have been very sick if I had an active MRSA infection for 2.5 yrs. But, because it grew out on culture I had to be treated for it. I have worked in healthcare for almost 40 years, so it is possible that I am colonized with it.
    Lorz, I was recently diagnosed with P. Acnes infection of my hardware. My symptom was thoracic back pain and then on X-ray, lucency around some hardware and a broken rod at T10-11. Initially, it was thought that the lack of fusion was only around T3-5, but at surgery, he found that T2-11 lacked fusion. Dr. Hart suspected an infection, so he removed all of the hardware from T2-T11 in addition to rebuilding my back/vertebrae, adding BMP, replacing the rods and adding a third one, and tethering the rod to my rib. The surgery was 13 hours. He did not do anything with the lumbar hardware as he said that it all looked good.
    The culture came back on day 6 as you said, it is very slow growing. I am on antibiotics, first through a PICC line for 6 weeks, now orally. I take a cephalosporin and probably will take it for the rest of my life. Like you said, the bacteria lives in the biofilm on the hardware. The biofilm and bacteria stop the osteoblastic activity, so the osteoclasts continue to break down the bone.
    I worry about drug resistance in the future. An international expert on instrumentation infection, Dr. Penelope Barnes works at the university where I had my surgery (OHSU). She has a PhD (i think in biochemistry) and an MD. She has an awesome way of explaining the very complicated way that hardware infection destroys your back. I am almost 3 months out from surgery and continue to wear a brace, neck collar, and bone stimulator.

    Lizardacres, I applaud your compassionate comments and thank you for posting them. Chronic pain is very isolating and has a profound impact on families/relationships and as you said frequently leads to isolation and depression/hopelessness. I know that there are pain management options/resources that might be available in addition to analgesics, and I hope that people that are in continued severe pain have access to such options and that the alternative therapies provide some relief.
    We are all in this scoliosis forum together to find mutual support. Some people are "lucky" to have surgery and deformity and pain relief with one surgery. Others have multiple surgeries, have surgery and find the pain and disability worse than before surgery, or never have surgery and continue with increasing pain and deformity.


    It is frequently very difficult for me to read the forum entries of people who have surgery and are relieved of their pain and have no complications. I am jealous of their success and wish that I had the same outcome. After 3 surgeries, I have a PJK, am mostly in a wheelchair, and worry about the possibility of drug resistance and future surgeries. After my spinal cord injury (one of my screws pulled out and it entered my anterior spinal cord), I realized that I was "the biggest nightmare" for people anticipating surgery. While I used to look at the forum entries a few times a week, I find myself feeling somewhat alienated from the forum and the success stories. I own the problem and am dealing with it.
    Susan
    Last edited by susancook; 06-13-2015 at 07:55 PM.
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev 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 SCI T4,5 sec to PJK
    2015: Rev 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
    2021: Removal T1 screw & rod

  12. #27
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    May 2008
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    reno,nevada
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    4,395
    In 1974, I was diagnosed with twin 50ís and scoliosis surgery back then was like putting men on Mars.....It was considered beyond dangerous, a thing that most considered crazy. As time passed, I read many books about scoliosis, remember when the screws were first being used, and wondered if it would ever happen. As the decades passed, the pain got worse and prepared for the eventual. I talked to surgical patients, even read ďConfessions of a Medical HereticĒ by Dr Mendelson back in 1981. You would think after reading that one, and hearing from my own surgeon that complications were 100% guaranteed and was rejected, that I would have stopped me in my tracks. But I was dying and the pain was completely out of control. I had no choice at all. Many of us donít have a choice. Surgery did save my life.

    My decision was also made on hearing or seeing that people actually DID made it through ok.....a sort of hope installed in the fact that there was a chance, that I actually had a chance at this.....Since this is a support forum, its valuable hearing about all the success stories, and also about those that have had complications. Itís a balance that we all need to be aware of, and to expect that our surgeries are very serious things that need careful thought.

    I consider my surgeries a success and I am doing pretty good, but even though this has happened I do know that at some point that there will be more on the plate for me at some point and will at some stage have my neck fused up higher. Its not something that I dwell on all the time, but its there. I think that itís fortunate, and that any person in perfect health would think Iím crazy for saying this, but itís the truth. I can imagine what kind of pain all of you guys are going through, and it really hurts having to see what some of our members have gone through with all the revisions, infections and so forth.

    I like to think that there is an answer, and there is. There is always an insult or pain producing problem that needs to be found. There is always hope that our pain will surpass, God willing, I am praying for all of you...Sometimes there are no answers, my brother is a perfect example, he is in his bear suit, but he always is looking for answers. His hope is exemplary since his situation will not improve, he has congenital chromosomal issues and traumatic brain injury from a car accident. The meds work and donít work......but its all beyond that. He now knows this, its not about what someone can do for him or his next medication. Its about his hope and appreciation for life. He can actually find the bright lights that drive him....

    and there are things that do make him happy through all the pain.

    I hope this made some sense, this is hard stuff for me to write.

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  13. #28
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    Jun 2011
    Location
    Southern CA
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    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
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  14. #29
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    Nov 2014
    Location
    New York
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    Thank goodness someone brought up the issue of stopping meds! I have been thinking the same thing for months but didn't have the courage to say anything. Some people need meds! Period. They are in too much pain and usually turn to narcotics out of desperation. Studies have shown that people who take meds for pain and not to get high do not get addicted. I think pushing people to get off pain meds, almost shaming them that they are still reliant on them, has been a long, sad trend on this forum. I've spoken with others offline who've said the same thing. We are in pain, we deserve relief. If you find a good pain management doctor he/she will tell you the same thing.

  15. #30
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    Quote Originally Posted by ksmom0611 View Post
    Thank goodness someone brought up the issue of stopping meds! I have been thinking the same thing for months but didn't have the courage to say anything. Some people need meds! Period. They are in too much pain and usually turn to narcotics out of desperation. Studies have shown that people who take meds for pain and not to get high do not get addicted. I think pushing people to get off pain meds, almost shaming them that they are still reliant on them, has been a long, sad trend on this forum. I've spoken with others offline who've said the same thing. We are in pain, we deserve relief. If you find a good pain management doctor he/she will tell you the same thing.
    Hi...

    I think you're right, that they don't get high, but I think almost everyone gets addicted once they've been on narcotics on a regular basis for awhile. Some people become addicted after only a few weeks. For other it takes a little longer. Getting off of narcotics will almost always cause withdrawal symptoms. The longer one takes narcotics, the harder the withdrawal.

    In the short term, narcotics are usually necessary to get through the first 6 to 12 weeks postop. After that, one can't really judge the effectiveness of narcotics without actually getting off the drugs and through withdrawal.

    --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

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