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Thread: The date is almost here

  1. #1
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    Nov 2014
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    The date is almost here

    It's almost time for my surgery (L4-S1) on January 21. I'm really starting to get nervous. My poor husband's stomach is a mess from stress! We finally told my 8 year old and she handled it beautifully. She said "I'm sad but it will be good when Mommy can do more things." I think that's the attitude I need to take. In my good moments I do, in my bad moments...well, let's say it's just harder. I feel like there's so much to do to prepare logistically, but then again not that much to do. Work is keeping me very busy. I feel like I have nothing else but this on my mind and I'm very boring to be around these days. It's just all consuming, My biggest fears are death, paralysis, the effects of limited movement, and not having any pain reduction in the long run. I try very hard to focus on the positive, but it gets to me sometimes. It feels like my life will be divided into "before the surgery" and "after the surgery." It's hard not knowing what the "after" part will feel like.

    For those who wore a brace when you were an adolescent, does the fusion feel like that in terms of limited movement? I'm having a hard time imagining what it will be like. I wore a brace for 2 years, so I know what that feels like. I really hope it's different, because feeling like that for the rest of my life is not a good thing.

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi there,

    will your fusion be T4-S1? Many here have that fusion and can speak to how they feel after. I wore a brace in jr high, and found that more restrictive than my T8-sacrum because the brace came up so much higher, and went lower, making it difficult/uncomfortable to bend at the hips.
    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

  3. #3
    Join Date
    Nov 2014
    Location
    New York
    Posts
    83
    Yes, fusion from T4-S1 with pelvic fixation.

    Just received a letter saying insurance company approved 4 days for hospital! I'm going to call the dr on Monday to find out about this and see if they can get more days authorized. I wish the insurance people making these ridiculous decisions witnessed/knew what was involved in this surgery. 4 days....ugh

  4. #4
    Join Date
    Feb 2013
    Posts
    45
    Who is doing your surgery and at what hospital? Will it be all posterior? 4 days sounds a bit brief.

    Risė

  5. #5
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    I am fused T4-sacrum and feel like my mobility hasn't altered my lifestyle at all. I tap dance, go to exercise classes, work in the yard, and play a ton of golf during the season. It didn't happen for a long time due to restrictions. I had to force myself to be patient during the first year and be content doing some arm exercises and walking and swimming. In my "signature" I have a video of my first golf swing after a year since the surgery. I have regained more flexibility during the last few years.

    I had every one of your pre-surgery fears. The surgery consumed almost every waking moment except when I was teaching. The stressful time before my surgery was much worse than the recovery. Best of luck with your upcoming surgery. Be sure to post and let us know how you're getting along.
    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/

  6. #6
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope all will go well. If your Surgeon feels that you need more hospital time, the insurance company will approve it.

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
    Join Date
    Oct 2014
    Location
    Arizona
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    112
    Quote Originally Posted by ksmom0611 View Post
    It's almost time for my surgery (L4-S1) on January 21. I'm really starting to get nervous. My poor husband's stomach is a mess from stress! We finally told my 8 year old and she handled it beautifully. She said "I'm sad but it will be good when Mommy can do more things." I think that's the attitude I need to take. In my good moments I do, in my bad moments...well, let's say it's just harder. I feel like there's so much to do to prepare logistically, but then again not that much to do. Work is keeping me very busy. I feel like I have nothing else but this on my mind and I'm very boring to be around these days. It's just all consuming, My biggest fears are death, paralysis, the effects of limited movement, and not having any pain reduction in the long run. I try very hard to focus on the positive, but it gets to me sometimes. It feels like my life will be divided into "before the surgery" and "after the surgery." It's hard not knowing what the "after" part will feel like.

    For those who wore a brace when you were an adolescent, does the fusion feel like that in terms of limited movement? I'm having a hard time imagining what it will be like. I wore a brace for 2 years, so I know what that feels like. I really hope it's different, because feeling like that for the rest of my life is not a good thing.
    Hi KSmom!

    I think we are the only Jan fusions scheduled on the forum. I am also finding that my upcoming surgery seems to be constantly on my mind and most of my activities seem to be related to preparing and also remind me that I may not do some of these things ever again. But honestly, I am really looking forward to a chance at a more normal life, where I don't have to lie down and rest after every little activity and having a fuller life. It's really hard to imagine as I've been this way for far too long.

    My husband has been a rock, but we are older and our kids are grown and gone. I can't imagine how it must be for you as you don't have the luxury of completely focusing on yourself. On the other hand, you have youth on your side so your healing will be accelerated compared to mine. I guess it all balances out.

    I was more worried last week but feel pretty calm now and just ready to go! I wore a Milwaukee brace and had a body cast so I know the restrictions from the fusion will be cake compared to those. Plus the brace was hot, which I hated.

    I can't believe I'm only 10 days out now, I think this last week will speed by. If I am not back online before you go, please know that you are in my thoughts.

    Liz
    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. #8
    Join Date
    Sep 2003
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    Northern California
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    Quote Originally Posted by ksmom0611 View Post
    Yes, fusion from T4-S1 with pelvic fixation.

    Just received a letter saying insurance company approved 4 days for hospital! I'm going to call the dr on Monday to find out about this and see if they can get more days authorized. I wish the insurance people making these ridiculous decisions witnessed/knew what was involved in this surgery. 4 days....ugh
    I think that's pretty typical. Insurance companies will only authorize a certain number of days in advance, and then the hospital has to call for additional days if needed.
    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.

  9. #9
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    My fusion is T4 to S1. It's perfect! It hasn't altered my lifestyle other than improving it. Some things take a little more effort, that's all. Like tying your sneakers. My back feels strong, like a 16 year old back and I love being taller and straighter.

    The pre-op stage is the hardest part of the whole exercise. For most of us, it comes down to "before surgery" and "after surgery." Still does for me, nearly 6 years later. My life re-started after surgery, it was slowing down to a crawl pre-op and I was fearful of the future.

    Ask any questions that still linger in your mind. It helps with the fear (which we all have.) Anything you haven't taken care of before surgery will not matter, all will work out. Best wishes for a successful surgery and a smooth ride through 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

  10. #10
    Join Date
    Nov 2014
    Location
    New York
    Posts
    83
    Thank you so much everyone. I just burst into tears reading all of this! Getting the support and reassurance from people who have been through this means so much.

    I'm just so tired of my back issues being such a big part of my identity. It started when I was 11 and has been non-stop ever since. I am so lucky that I was able to finish grad school, get married, and have my 2 beautiful children. But the pain and limitations and constant attention to it has been overwhelming at times. I'm tired of thinking "I can't do that because of my back." It's very hard to believe that this will change after surgery. I feel like I'm trading one set of limitations for another. That's why it helps so much to hear people's stories and how their lives have changed. I'm a little worried that I'm only hearing the good stuff though.

    The surgery is always on my mind these days...I can't escape it. Because of pain, I don't sleep well, so I wake up and think about it. It's hard to fall asleep because I'm thinking about it. It's the first thing I think of when I wake up. Every move I make I think "will I be able to do this?" I'm scared I won't have pain reduction.

    I know I will get through the surgery (well, I cant help but think of death and paralysis) and the recuperation, which will be hard. But thankfully i've been through surgery before, so I know what to expect (not back surgery). Unfortunately I have a history of almost dying from a blood clot after surgery, so I'm nervous about the actual hospital stay and the nurses not noticing things. If my husband hadn't been with me last time, I would have died. All doctors have said so. Even with this though, my biggest fears are about the long-term lifestyle changes.

    In addition to all of this, there are financial problems. I work for myself, so I won't be bringing in any income while I'm recuperating. We do not have savings. Luckily my mom will be helping us out and we are doing an online giveforward fundraiser, but the burden of the money adds to everything else. My mom will be staying with us to help and that is a whole other dimension of stress I just don't want to deal with. I'm planning to focus on my healing and let everyone else deal with all other aspects of life. That's hard for me because I'm usually the one who juggles everything. There are a lot of people who depend on me at work to make it through their daily lives, so not being there for them makes me feel guilty. It's strange to just hand over my job to someone covering for me and not have contact with the people I normally see weekly.

    I just have so many mixed feelings about all of this. I keep thinking "I don't want to do this!" but I also can't go on without doing it. This is a "down" moment for me while typing this, sometimes I have "up" moments where I'm eager to see what improvements will happen. I appreciate being able to vent like this.

    Lizardacres - Thank you for your kind words. We are going through this at the same time! I will also be thinking of you and sending healing thoughts your way. My surgery is in 15 days. Hugs to you!

  11. #11
    Join Date
    Jan 2012
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    Yacolt, WA
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    Hi! Sorry that I did not post sooner, but I am "into being me".

    First of all, I believe to have surgery, you need to be miserable. Sounds like you qualify! When I was lying on the smelly rug floor in the airport in FIJI for 1.5 hours with an ice pack on my back.....I knew that my time had come.

    Your last email brought to mind something that I used to tell people that were trying to make a life changing decision......The best way to really know what to do is:

    a] to have a crystal ball and be able to see into the future. HAHA! Not possible....
    b] have an identical twin sister with exactly the same problem; she has the surgery and then you see how she does and then make the decision.

    In spite of all of my current challenges, I would do the original surgery again and am glad that I had it done. If I had not done the surgery, I would be in a lot of pain, on lots of drugs, and not at all active. One wake up moment for me, is that I asked both consults if I should have the first surgery, one said, "I don't know how anyone with your problems would not want the surgery" and the other said, "yes". I cannot imagine anyone unless Masochistic would WANT this surgery.

    Another thought: You might want to give your 8 year old something of yours that you like that she can sleep with that smells like you. Give it to her a day or so before you go into the hospital and tell her that you want her to keep it in her bed with her [so that you are with her at night or something like that] and that when you come home, that she can give it back. That might, in some small way, help her with feelings that you might not come back after surgery. Another idea: Buy 8 or so cards [many stores have 99 cent funny cards or make them yourself] and have your husband give them to her every day that you are in the hospital. Write funny notes on them and talk about things that you want to do with her after you get out of the hospital. Also, talk to her about her "job" as your nurse and what she can do to help you when you come home.

    Good luck. I am sending you healing vibes!

    Susan

    Who is your doctor and where are you having your surgery?

    Re: your "down" times, call someone on this forum. Sometimes just talking to someone gets you over it.
    Last edited by susancook; 01-06-2015 at 03:00 PM.
    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

  12. #12
    Join Date
    Nov 2014
    Location
    New York
    Posts
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    Thank you Susan. Sounds like you have some mental health professional/child development professional in you?

    Those are great ideas for my kids (I have a 3 year old too). I've been so inside my own head that I haven't thought about how to make the time apart shorter for them. Mommy guilt....I will definitely use those suggestions.

    I really like your thoughts about the crystal ball and twin. You are absolutely right. There is no prediction either way, and we make the best choice we can given our knowledge at the time. It's a better moment right now...I'm like a yo-yo. Lol.

    I was at the hospital for pre-surgical testing for 4 hours yesterday! Beth Israel in NYC. I was contemplating lying on the dirty waiting room floor because of the pain I was in from sitting there for that long. I think I've gotten so used to things being this bad that it didn't occur to me until just now, reading your post, that this is not an ok way to live. I've has to sit in the middle of Home Depot, in the middle of the parking lot at a grocery store, in the middle of department stores....I forget about all of those moments. Thank you for the reminder.

    My doctor is Dr. Lonner. He is very nice and has an excellent reputation. I feel very comfortable with him. It's everyone else who will be taking care of me in the hospital that worries me. That's why I'll have someone with me 24 hours/day, to act as my advocate. I think I've done all I can to make this a healthy outcome.

    Reading everything others can do now is very inspirational! I need to focus on that!

  13. #13
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
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    KSMOM: Isn't mommy guilt great? It is the gift that never stops giving! About 8 months ago, I was talking to my 41 year old daughter about my being in the military [Navy Nurse Reserve] and she said, "When they called you up to mobilize you for Desert Storm, I went over to my friend's house and cried for the entire weekend". I felt like crap. I never knew. I was so wrapped up with myself, graduate school, my job, the war, my dying, flashbacks from taking care of soldiers from Vietnam, and how I was going to manage everything, that I TOTALLY MISSED HER BEING UPSET! Bad mommy, bad mommy. Of course I gave her a big hug.....but how could I have missed that?

    Sounds like you are organized. Now, when I go up to the University and stand in line for my meds, I get flashbacks of the times that I sat on the floor there too. Guess that I did a lot of floor sitting before my surgery.

    Keep us posted on your progress.

    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 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

  14. #14
    Join Date
    Dec 2006
    Location
    North Carolina
    Posts
    6
    Quote Originally Posted by ksmom0611 View Post
    Thank you so much everyone. I just burst into tears reading all of this! Getting the support and reassurance from people who have been through this means so much.

    I'm just so tired of my back issues being such a big part of my identity. It started when I was 11 and has been non-stop ever since. I am so lucky that I was able to finish grad school, get married, and have my 2 beautiful children. But the pain and limitations and constant attention to it has been overwhelming at times. I'm tired of thinking "I can't do that because of my back." It's very hard to believe that this will change after surgery. I feel like I'm trading one set of limitations for another. That's why it helps so much to hear people's stories and how their lives have changed. I'm a little worried that I'm only hearing the good stuff though.

    The surgery is always on my mind these days...I can't escape it. Because of pain, I don't sleep well, so I wake up and think about it. It's hard to fall asleep because I'm thinking about it. It's the first thing I think of when I wake up. Every move I make I think "will I be able to do this?" I'm scared I won't have pain reduction.

    I know I will get through the surgery (well, I cant help but think of death and paralysis) and the recuperation, which will be hard. But thankfully i've been through surgery before, so I know what to expect (not back surgery). Unfortunately I have a history of almost dying from a blood clot after surgery, so I'm nervous about the actual hospital stay and the nurses not noticing things. If my husband hadn't been with me last time, I would have died. All doctors have said so. Even with this though, my biggest fears are about the long-term lifestyle changes.

    In addition to all of this, there are financial problems. I work for myself, so I won't be bringing in any income while I'm recuperating. We do not have savings. Luckily my mom will be helping us out and we are doing an online giveforward fundraiser, but the burden of the money adds to everything else. My mom will be staying with us to help and that is a whole other dimension of stress I just don't want to deal with. I'm planning to focus on my healing and let everyone else deal with all other aspects of life. That's hard for me because I'm usually the one who juggles everything. There are a lot of people who depend on me at work to make it through their daily lives, so not being there for them makes me feel guilty. It's strange to just hand over my job to someone covering for me and not have contact with the people I normally see weekly.

    I just have so many mixed feelings about all of this. I keep thinking "I don't want to do this!" but I also can't go on without doing it. This is a "down" moment for me while typing this, sometimes I have "up" moments where I'm eager to see what improvements will happen. I appreciate being able to vent like this.

    Lizardacres - Thank you for your kind words. We are going through this at the same time! I will also be thinking of you and sending healing thoughts your way. My surgery is in 15 days. Hugs to you!

    I had all the same feelings you had and had been dealing with this since I was pre teen as well....It shaped my entire life...Although I was very active before surgery (Played tennis 5 days a week, ran a mile just before I caught my flight up for surgery) I did live with daily pain (muscular and bone on bone degeneration of lower spine also emotional with the way I looked for so long and progression of curve)...Any ways, although I have lost flexibility I have gained sooooo much more...I am only 6 mo out but I do plan to do everything I did before surgery...things may just may take a little longer...You just have to be positive and tell yourself to move on.....I have 2 children as well and kids are a great motivator to get you going again and get things back to normal....Just be realistic about surgery.. This is a 2 year commitment but if all is normal with your procedure you should only be "out of it" for about a month. After that (if you can get off narcotics) you should be able to move on.....I will say that I was in hospital for 5 days, flew home at day 5.....Went shopping for a recliner at day 9....Walked around grocery store and did a little laundry with husband at day 10 ...Went to farmers market and was cooking a little bit around day 14 (with husband) and was able to walk 1/2 a mile within 3 weeks.... Since you have been dealing with this your entire life you are obviously a strong resilient person who can muscle your way through this short time frame to gain soooo much.....My tennis friends do keep asking me when I am coming back (no one will really understand what you are dealing with) and I just tell them in a maybe a year or so since a fall is just not worth the risk .... I am sooooo happy I did this!!!
    RMT
    45 yrs old at time of surgery
    fused t4-s June 2014, Dr Lenke
    pre surgery curves 60 upper, 70 lower
    after surgery--pretty darn straight

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