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

  1. #61
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Back-out: Bummer....so sorry about your breast cancer diagnosis, but hope that it is curable. Wishing you the best for recovery.
    Hope to see you back here.
    Susan with spinal cord injury after spinal surgery
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  2. #62
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    359
    Back-out

    I'm sorry to hear about what you are about to face.

    I wanted to pass along information about a lodging guide called Joe's House.

    http://www.joeshouse.org
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  3. #63
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    There is really no definitive study on complications in adult deformity surgery. There are several multi-site studies being conducted to look at both long and short-term complications. Unfortunately, the percentage of adults who have deformity surgery and who require additional treatment is fairly high. It wouldn't surprise me if we find that the 20 year serious complication rate is 50% or higher. As older and sicker patients are offered a surgical option, the complication rate continues to rise.

    There's no question that the complication rate is too high. Unfortunately, spinal deformity is a very complex problem. It's horrible to have to make the decision to either live with chronic pain or risk having surgery that might lead to significant problems.

    The good news is that the most serious problems are relatively rare. I've known or heard about a handful or two of people who feel that scoliosis surgery ruined their lives. And, it's hard to know in all of those cases, what these people's lives would have been like without the surgery.


    ROCK <US> HARD PLACE
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #64
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    So sorry to hear this latest, Back Out. Sending my very best wishes for a full recovery.
    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. #65
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    I have been away from the forum for a long time. I am so sorry for all of you who have had such horrible outcomes from your surgery. Many times I have felt sorry for myself because of daily pain, but after reading all of your posts, I realize that even though I have pain every day, most of the time it is not disabling pain. I cannot take anti-inflammatories as they were destroying my kidneys. I had a dumb primary care physician that didn't even notice that my kidney function tests were flagged as high. Fortunately because I was a Medical Technologist in my former life, I always requested copies of my lab reports. I stopped taking NSAIDS, fired my PCP and found a new PCP, and went to a Pain Clinic Doc. He upped my Neurontin dosage and put me on Tramadol. He suggested the Medtronic neurostimulator that I decided to hold off on for the time being. I also went for more physical therapy. It all seemed to help somewhat. Then I had my hip replacement surgery and then seven months later arthroscopic knee surgery. My restless leg syndrome came back after the hip surgery and finally two years later has almost disappeared. It has taken me two years to be able to walk a mile and in the meantime my pain doesn't seem as bad. Life can be a real challenge. I feel so bad that I have complained about my pain now that I read about these horrible outcomes. I am sorry that I had encouraged some of you to go ahead and have the surgery, but because Dr. Rand basically gave me my life back, I thought it was worth a try. Before I had my surgery, I knew I would be in a wheelchair for the rest of my life if I didn't do something drastic. I was basically begging to have the surgery. Melissa, Susan, Pam, Lori, Tableone, daily pain, Spring 72 and anyone else who is suffering so badly, please accept my sympathies for your pain. I pray that with time things will improve for each and everyone of you.
    Sincerely, Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  6. #66
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    Oh no, Pam. So sorry to read this. I won't give advice nor platitudes, just best wishes that things ease up for you, and prayers for your all-around well being.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  7. #67
    Join Date
    May 2010
    Posts
    345

    Attn.TwinmomTN~~

    First I want to tell Pam how utterly sorry I am that you are now up against another battle. I don't recall you saying where the biopsy was done on your body, but just hope all turns out well for you. I always worry that on top of these huge surgeries , something like that can also happen.
    TwinmomTN, I also live with pain everyday . And it gets very old. I didn't have a choice if I wanted to stay out of a wheel chair. I had a lot of pain for years before I had the surgery, so I knew already what pain is. At least I'm in a upright position while deAling with pain. I just do everything I can to have the best quality of life I can. I feel isolated a lot of the time, because of my condition. I have extreme neck pain(radiates down my arm) . And lower back pain thAt is also causing burning ,numbness in my feet & lower legs(from an impinged nerve). It's frustrating! I suffer from adrenal fatigue from all the stress on my body. Ugh! I could go on, but I think you have heard enough! I feel for you and every person on here that deals with these kind of issues daily. But, like I said, I am walking, and am thankful for that. I am glad you posted about this subject of what we have to deal with after the surgery. I know there are some that have been blessed with no pain at all. And that is wonderful. We at least can understand the plight of these surgeries and I truly understand your feeling. Warm thought of you and all the rest of our scoli friends.
    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

  8. #68
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by LindaRacine View Post
    There is really no definitive study on complications in adult deformity surgery. There are several multi-site studies being conducted to look at both long and short-term complications. Unfortunately, the percentage of adults who have deformity surgery and who require additional treatment is fairly high. It wouldn't surprise me if we find that the 20 year serious complication rate is 50% or higher. As older and sicker patients are offered a surgical option, the complication rate continues to rise.

    There's no question that the complication rate is too high. Unfortunately, spinal deformity is a very complex problem. It's horrible to have to make the decision to either live with chronic pain or risk having surgery that might lead to significant problems.

    The good news is that the most serious problems are relatively rare. I've known or heard about a handful or two of people who feel that scoliosis surgery ruined their lives. And, it's hard to know in all of those cases, what these people's lives would have been like without the surgery.


    ROCK <US> HARD PLACE
    Having had a "major complication", rare as mine was, I offer this piece of my wisdom. It is easy to say, after a complication, that one can wish that he/she never had the surgery. In many cases, that is an easy out. We generally assume that if we did not have surgery, then we would be better off than we are now. This is magical thinking. Before my first surgery, I could walk 1/2 block before having to sit down with sciatic pain. I could cook dinner, but was is excruciating pain by the end of my cooking and needed to lay down with an ice pack on my thoracic kyphosis for 1/2 an hour before I could eat. I leaned to the right. My first surgery was 2 plus years ago, and without that surgery, I am sure that I would have degenerated further. So, now I am in a wheelchair/crutches but am still happy that I had the initial surgery. If I had not had the first surgery, I would probably permanently be in a wheelchair within the next 5 years.

    If I had a different surgeon, would the outcome be different? Maybe.....but then again, it might have been worse.

    My heart goes out to those in chronic severe pain.

    Susan
    Last edited by susancook; 09-15-2015 at 02:06 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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  9. #69
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by susancook View Post
    Having had a "major complication", rare as mine was, I offer this piece of my wisdom. If is easy to say, after a complication, that one can wish that he/she never had the surgery. In many cases, that is an easy out. We generally assume that if we did not have surgery, then we would be better off than we are now. This is magical thinking. Before my first surgery, I could walk 1/2 block before having to sit down with sciatic pain. I could cook dinner, but was is excruciating pain by the end of my cooking and needed to lay down with an ice pack on my thoracic kyphosis for 1/2 an hour before I could eat. I leaned to the right. My first surgery was 2 plus years ago, and without that surgery, I am sure that I would have degenerated further. So, now I am in a wheelchair/crutches but am still happy that I had the initial surgery.

    If I had a different surgeon, would the outcome be different? Maybe.....but then again, it might have been worse.

    My heart goes out to those in chronic severe pain.

    Susan
    Couldn't agree more.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  10. #70
    Join Date
    Jun 2015
    Location
    San Francisco
    Posts
    2

    pain implant device (non drug related)

    Hello All-

    First off I am extremely sympathetic - and I do understand what real unending physical pain to where you cannot walk is like. With no relief whether you lie down ,sit up etc.

    Anyway- I am writing to ask- has anyone with this severe pain ever considered having one of those electrical pain devices implants.? This is not a drug pump. It is not a drug. I knew someone many years ago who I have lot touch with- who was a rep for some kind of medical device like that and it was miraculous for the patients it was put in. I used to hear about back in the day- when I did not have this pain or problems that I have now.

    Also this was in the mid nineties or so- so ten to one they would be even better than they were.
    I do not know the name or brand- I did not pay attention to that at the time. But boy the stories were really cool and she was not selling me anything- she was just a friend of mine who would tell me about her work.

  11. #71
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by Gabriella1212 View Post
    Hello All-

    First off I am extremely sympathetic - and I do understand what real unending physical pain to where you cannot walk is like. With no relief whether you lie down ,sit up etc.

    Anyway- I am writing to ask- has anyone with this severe pain ever considered having one of those electrical pain devices implants.? This is not a drug pump. It is not a drug. I knew someone many years ago who I have lot touch with- who was a rep for some kind of medical device like that and it was miraculous for the patients it was put in. I used to hear about back in the day- when I did not have this pain or problems that I have now.

    Also this was in the mid nineties or so- so ten to one they would be even better than they were.
    I do not know the name or brand- I did not pay attention to that at the time. But boy the stories were really cool and she was not selling me anything- she was just a friend of mine who would tell me about her work.
    Are you talking about a spinal cord stimulator?
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  12. #72
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    I am currently in a discussion about having a spinal cord stimulator placed. Does any one have information on them?
    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

  13. #73
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    Jackie, Melissa would know......read her past threads and posts.

    Ed
    49 yr old male, now 58, the new 53...
    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

  14. #74
    Join Date
    May 2016
    Posts
    48
    Quote Originally Posted by jackieg412 View Post
    I am currently in a discussion about having a spinal cord stimulator placed. Does any one have information on them?
    Hi Jackie ,

    I got this "quiz" about whether a SCS would be right for me:
    http://us1.campaign-archive2.com/?u=...f&e=4d431c96e6

    I would seize upon any tech that could possibly help. They have advanced models now ( 32 leads I think) as opposed to the first generation of the devices. They can install one on a temporary basis, in the outpatient center. If you don't like it, or it is worthless, they can easily remove it. If my deformity was not as severe and stable, I would try one myself. However that is not an option for me, because once the curvature started it never stopped, only varying in how fast it progressed. I heartily encourage you to try one, seeing as they can be easily removed. Even if it reduced your opiate intake that would make it worthwhile, would it not? Good Luck, RJM

  15. #75
    Join Date
    Jun 2015
    Location
    San Francisco
    Posts
    2

    I think it must have been a SCS

    Quote Originally Posted by LindaRacine View Post
    Are you talking about a spinal cord stimulator?
    Hello Linda,

    I am sorry that I do not know what it was but it was a device that back in the 90's a friend of mine was a rep for - and would accompany a surgeon in surgery to make sure he/she placed it properly. She was a friend of mine and I did not get the name of what it was but I am guessing it was possible the scs All I know was that as a friend she would relate some miraculous stories of people who had not been able to walk be able walk due to pain be able to walk. She would be a little embarrassed or felt awkward she said because she and the doc would visit the patient after the surgery and the patient would be gushing about how my friend saved their life (when in fact it was the surgeon who did the placing of the device). She worked for a medical device company (and had a medical background but not of a surgeon).. Anyway- it sounds like it has improved upon since 1997.. I wondered if that could help some of these people who have severe pain.

    I will read up on it.

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