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  1. #1
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
    89

    Second fusion coming up...

    Hi all, I have my second fusion coming up in one month. 17 years ago I was fused from T2-T12 when I was 13. Since then my lumbar has continued to curve and twist and now I am scheduled to have T10-S1 fused with both SI joints fixated as well. I have a husband as well as a 3 year old son and a 1 year old daughter at home.

    I am terrified. All the surgeons I have seen have said this surgery is not a matter of if but a matter of when and itís better to do it now while Iím young (29) and healthy and strong instead of waiting until Iím older, in a lot more pain, and the problem continues to worsen.

    Iím scared of the pain

    Iím scared of the limitations after fusion and complete healing. I donít want to end up on disability or anything like that.

    Iím trying not to let my fear override the logic behind why this surgery makes sense but Iím still really really scared.
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,159
    I will never forget when I set my dates, and I sure turned into a zombie with my mind constantly fixated on surgery, justifying the decision.

    When pain is bad and getting worse, and you know surgery is inevitable, you have to forge ahead. There is no backing out. It's crazy. It was the hardest decision of my life. As the date creeped up the last few days I had a release, sort of like when you reel in a fish, for the last 10 feet, they give up. I walked in, wrote my co-pay check, and it's funny how the people in the hospital knew. They all knew. My vascular surgeon even asked me if I was scared, and my response was "Am I supposed to be scared?" In other words in my mind, I had complete and total confidence in my surgeons and the team. You have to have this. You have to trust your surgeons. You also have to be ready for anything and be brave. Remember that the majority of complications are temporary. It's a mental mindset I adopted, if I am going to play football, I WILL GET TACKLED. and then get up. If I am going into a boxing match, I will get beat up, its expected, and I will recover.

    I now think back and all that stress was unnecessary. It was. And all my assumptions were wrong. I got home, and thought I would never be able to reach my feet ever again. That was wrong. You have to have powerful determination and will power to heal. You think way ahead, never back thinking I shouldn't have done this, never second guess your decision after you are done. I always thought that the pain of recovery was temporary. It's this healing process that we have to do, so thoughts are always on the goal which is total and complete recovery.

    On the subject of pain, I learned the most from Dr Joshi. I did a thread and some notes on one of the videos, but understanding pain and why it happens is extremely important as a scoliosis patient. This video might be boring, but give it a shot.
    https://www.youtube.com/watch?v=8QcwlE-tw1o

    Heck, your 29. You have your age on your side.....and you will get through this.

    BTW, nice to see you posting again...

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  3. #3
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
    89
    Thank you Ed, it brings my heart a little more peace to hear from you again.

    After fighting with insurance, who wanted me on a cocktail of 3-4 narcotics for 2+ years before they would approve surgery, we finally got it authorized...then Covid hit. I have confidence in my surgeons, no fear or worry there, just fear of the pain in the immediate sense and then long term, I donít want to end up regretting a surgery I canít ever have undone. I know any and all limitations I will either adapt to or find a way around or accept but itís just so hard to not have any predictability in what life will look like concretely after surgery since everyone is so different.

    I have run into a majority of people with this surgery saying, ďgod I regret itĒ or ďI went straight onto disabilityĒ. At almost 30 thatís not what I want for the rest of my life! I dairy farm and I am very independent, I donít want to lose that! The whole idea of this surgery is to preserve my physical integrity before it continues to diminish further, not to take it away in one full swoop! Right?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  4. #4
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
    89
    I guess in terms of limitations, after healing of course, what should I expect to either be able to still do but in a different way, or not be able to do at all?

    Gardening
    Reclining on a couch or in a recliner
    Getting onto and off of the floor (playing with my kids)
    Getting laundry out of a top load washer
    Making the bed
    Running
    Riding a bike
    Swimming
    Jumping
    Putting my own socks and shoes on
    Vacuuming
    Sweeping/mopping
    Unloading the bottom half of the dishwasher
    Shaving my legs
    Sex
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  5. #5
    Join Date
    Sep 2019
    Posts
    164
    Quote Originally Posted by JScoli91 View Post
    I guess in terms of limitations, after healing of course, what should I expect to either be able to still do but in a different way, or not be able to do at all?

    Gardening
    Reclining on a couch or in a recliner
    Getting onto and off of the floor (playing with my kids)
    Getting laundry out of a top load washer
    Making the bed
    Running
    Riding a bike
    Swimming
    Jumping
    Putting my own socks and shoes on
    Vacuuming
    Sweeping/mopping
    Unloading the bottom half of the dishwasher
    Shaving my legs
    Sex
    These are great questions. I'd answer if I was fully healed, but I'm not. I can't tell if my limitations will last or not, are due to permanent limited mobility or temporary pain.

    I wish I had a top loading washer again. It's front loaders that are hard. When wet clothes stick to the top of the drum I can't see them and I can't turn the drum with a grabbing stick due to a sore back, it's too heavy right now. I need the grabbing stick to pull clothes out because they are low down but wet clothes are heavy.
    Last edited by Tina_R; 05-30-2020 at 07:50 PM.

  6. #6
    Join Date
    Aug 2019
    Posts
    111
    Quote Originally Posted by Tina_R View Post
    These are great questions. I'd answer if I was fully healed, but I'm not. I can't tell if my limitations will last or not, are due to permanent limited mobility or temporary pain.

    I wish I had a top loading washer again. It's front loaders that are hard. When wet clothes stick to the top of the drum I can't see them and I can't turn the drum with a grabbing stick due to a sore back, it's too heavy right now. I need the grabbing stick to pull clothes out because they are low down but wet clothes are heavy.
    Tina Sorry to interrupt the conversation but your inbox is full

  7. #7
    Join Date
    Sep 2019
    Posts
    164
    Quote Originally Posted by JScoli91 View Post
    Thank you Ed, it brings my heart a little more peace to hear from you again.

    After fighting with insurance, who wanted me on a cocktail of 3-4 narcotics for 2+ years before they would approve surgery, we finally got it authorized...then Covid hit. I have confidence in my surgeons, no fear or worry there, just fear of the pain in the immediate sense and then long term, I don’t want to end up regretting a surgery I can’t ever have undone. I know any and all limitations I will either adapt to or find a way around or accept but it’s just so hard to not have any predictability in what life will look like concretely after surgery since everyone is so different.

    I have run into a majority of people with this surgery saying, “god I regret it” or “I went straight onto disability”. At almost 30 that’s not what I want for the rest of my life! I dairy farm and I am very independent, I don’t want to lose that! The whole idea of this surgery is to preserve my physical integrity before it continues to diminish further, not to take it away in one full swoop! Right?
    Is that what you hear, that a majority of people who have had it are negative about the surgery? Have you told your doctors this, and what do they say?

    I was too naive to question my doctors. I saw one surgeon for a diagnosis but the surgery was beyond what he would do (it required two surgeons and he didn't work that way, he said) and he referred me to my present surgeon. Neither one said much about how iffy this surgery is.

    I'm pretty sure even young and strong as you are that you will be unable to do farm chores for quite some time post surgery. I hope you have backup planned for that. It takes time to heal. The initial healing is tough but that's temporary. Really it's the results that matter, of course. That is hard to predict. We can only tell you our own results.
    Last edited by Tina_R; 05-24-2020 at 03:47 PM.

  8. #8
    Join Date
    Oct 2019
    Location
    Washington state
    Posts
    89
    I havenít literally counted the number of responses on either side of it but I guess when I go to Facebook support groups and the like it is filled with more people saying how miserable their lives are now (even after they are fully healed) compared to before. I donít know if thatís because all the people who are good and healed and happy are busy leading their lives or what but thatís the trend I seem to see at least.

    What were your results like Tina? Fused to your pelvis?

    We milk 800 cows and we have 25 employees. The vast majority of my job is behind my desk (even though I would LOVE to be out doing hands on chores with the cows more than I currently am). I am currently slated to not return to work until 3 months post-op but we will see.

    I know in the immediate recovery itís going to suck major A$! and over the first year or so after there will still be hurdles to jump through, my concerns will be with what limitations I will be faced with for the rest of my life because of this surgery that wonít be able to be overcome and I will instead have to adapt to.
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,263
    The issue is would these people who are miserable with their fusions be MORE miserable if they weren't fused? Would they be alive?

    Hard to know. Only a surgeon who has some number of patients who refused surgery might be able to say.

    I do not believe my one daughter would even be alive absent fusion. I KNOW neither girl would have lived the lives they lived in the last 10 years absent fusion. They would have done NOTHING even if they were alive... not finished high school, not gone to college, not gone to grad school, not worked in a zoo, not hiked miles into the wilderness to electrofish in remote mountain streams, etc, etc., etc.
    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."

  10. #10
    Join Date
    Sep 2019
    Posts
    164
    Quote Originally Posted by JScoli91 View Post
    I haven’t literally counted the number of responses on either side of it but I guess when I go to Facebook support groups and the like it is filled with more people saying how miserable their lives are now (even after they are fully healed) compared to before. I don’t know if that’s because all the people who are good and healed and happy are busy leading their lives or what but that’s the trend I seem to see at least.

    What were your results like Tina? Fused to your pelvis?

    We milk 800 cows and we have 25 employees. The vast majority of my job is behind my desk (even though I would LOVE to be out doing hands on chores with the cows more than I currently am). I am currently slated to not return to work until 3 months post-op but we will see.

    I know in the immediate recovery it’s going to suck major A$! and over the first year or so after there will still be hurdles to jump through, my concerns will be with what limitations I will be faced with for the rest of my life because of this surgery that won’t be able to be overcome and I will instead have to adapt to.
    My neck and my sacrum are not fused. The rest was done in two surgeries about 6 months apart. The second one unplanned.

    I am much older than you (60's) and my results may not apply to you. I'm having problems of an orthopedic nature which are mostly showing up since the surgery but may have started before and may have contributed to my scoliosis curve getting bad enough to cause problems later in life. I had developed problems walking. I considered myself strong before all this.

    Am I better off after surgery? I'm on the fence. I'm still waiting for the payoff. The pinched nerve in my leg is better, that was a serious issue. But I am left with imperfect balance and don't feel secure without a cane, which I never needed before. I feel strain in my pelvis now when I walk a mile. I feel neck strain sitting or in bed. But I'm far from being on disability.

    I'm straighter and not progressing, yay. Progressing curvature scares me, I saw a really deformed person once (elderly). It's beyond cosmetic when you look more like a crab or a frog than a human being.

    I'm unlucky in that I can feel the rods. I have stinging nerve pain and deep numbness on my back. The pain may be related to feeling the rods and may never go away unless the rods are removed. Right now it's still too early to tell. An orthopedic surgeon I see for other reasons tells me it just takes a lot of time at my age. A 60-something relative of his is doing great 2-1/2 years after scoliosis fusion surgery.

    I think you should pay more attention to what people your age are saying and you may have to go to other sites to get that input. I found facebook to be a lot of "God bless you" support. Reddit is busy but there's a lot of dubious medicine there, people recommending non-surgical cures to each other. But both places have information of value, too, some good contributors, some who had the surgery at your age and are older now.

    Your farm sounds great. I know it's hard physical work.
    Last edited by Tina_R; 05-26-2020 at 02:35 PM.

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