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Thread: Terrified...date set

  1. #1
    Join Date
    Apr 2006
    Posts
    227

    Terrified...date set

    I set my surgery date for April 28th. I'm SCARED to death. How do you really know if this is the right decision. Sitting with the doc, I actually started crying (and thought I had my act together). 8 hour surgery - he says he will need to go through the front (anterior) and back (posterior) and may need to take bone out of my good hip. He'll take out the Harrington rod and replace it with titanium - he hopes to spare 2 discs in my lumbar. (I may end up with 2 more scars plus a longer back scar) It's so overwhelming to hear the details...what if I'm making a mistake? Some people say I'm doing what's best for me and will improve my quality of life - my husband's scared and is afraid I'll end up in worse shape. It was so much easier the first time around when my parents made the decision.

    Scared to death in WI!
    Always Smilin' (well maybe not this week)
    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

  2. #2
    Join Date
    Sep 2008
    Posts
    336
    Quote Originally Posted by always smilin' View Post
    I set my surgery date for April 28th. I'm SCARED to death. How do you really know if this is the right decision. Sitting with the doc, I actually started crying (and thought I had my act together). 8 hour surgery - he says he will need to go through the front (anterior) and back (posterior) and may need to take bone out of my good hip. He'll take out the Harrington rod and replace it with titanium - he hopes to spare 2 discs in my lumbar. (I may end up with 2 more scars plus a longer back scar) It's so overwhelming to hear the details...what if I'm making a mistake? Some people say I'm doing what's best for me and will improve my quality of life - my husband's scared and is afraid I'll end up in worse shape. It was so much easier the first time around when my parents made the decision.

    Scared to death in WI!
    Always Smilin' (well maybe not this week)
    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34
    It is a hard decision to make, and I'm sure that you've researched and thought about it, and did the things you could to make an informed decision.

    That being said, a dear cyberfriend recently told me when we made the decision and set the date for my dd, now that the decision is made, focus on doing what you can to prepare for surgery and recovery. Stay positive, *focus*, on what you need to do for you (and in my case, for my child). Put your energies into those kinds of things.

    Ask as many questions as you need to to your dr., come here for questions and support, and do things that will help you get through this.

    This was a very hard decision for us to make as parents for our child. But we had to weigh future quality of life for her and such. I hate to have to see her go through what she will have to go through and would trade places with her any day to spare her this, but I can't. So I will do my part to be there for her and care for her every step of the way.

    We're here for you!
    Marian

  3. #3
    Join Date
    Mar 2007
    Posts
    213
    Oh man...Always Smilin' - you sure bring back memories of how I felt from August till December 11th last year! Surgery, especially something this big, is a massive decision. For all the logical, rational, research-based arguments for having surgery, there's always emotion of the situation - often the fear, the complete uncertainty, the constant doubt & second-guessing. Having faced surgery from both sides of the coin, I think it's often easier to handle when it's a matter of life and death. I'm sorry I must have missed a lot of your back-story (if you've posted about it), but I think I was in a similar position to what you're in - my scoli wasn't life-threatening, but was seriously impinging on my quality of life. But knowing that didn't stop me thinking about how much worse the surgery going bad could have made things....

    I wish so much that I could make this easier for you, but I guess the most I can say is make sure you have a surgeon who you Trust. That was the only thing that saved me from pulling the plug on this last surgery - I knew there were still risks, but under all that fear, I knew I needed the surgery if I was going to have a chance of Living - the way I want to. I felt like the risks from his end were minimised, so I owed it to him & me to take control of the factors at my end that could raise the risks. Like Marian, that's the only thing I can honestly tell you helped a little is to focus on the things you can control. If you trust your surgeon, channel your tension into things that will bring you closer to your goal of a better quality of life - e.g., getting a little physically fitter for surgery; taking a prescribed med if you need help with sleeping or worrying that's interfering with life; asking questions and getting support from people here who have been in your position; spending time relaxing & feeding your heart/soul/emotional well-being/whatever else you want to call it - by doing things you love with the people you love.

    I have to agree with you, about it being so much easier when parents made these decisions. Marian - I think it's been said around here before, but please know you are giving your daughter a Gift by taking the weight of this decision from her. Please try to look at it less from the perspective that you are deciding to subject her to painful surgery, and more from the view that you are saving her the agony not only of curve progression but also of making this decision for herself in a few years. I'm only truly coming to appreciate how difficult it was for my parents to make these decisions for me during my childhood/adolescence - and what a blessing it was.

    Best wishes for your surgery, Smilin'. Take care.

  4. #4
    Join Date
    Nov 2008
    Posts
    14

    I am in the same boat

    Hello Always Smilin'!

    I am going those same emotions. I am terrified too! My surgery is scheduled for April 6th with Dr. Lagrone in Amarillo, Texas. I am stressing to the point of not sleeping and being in a negative bad mood. It is unlike me to be so unpleasant. My poor family. I actually feel better today because I spoke with one of Dr. Lagrone's previous patients who had the surgery in 2001. She had been through 4 other surgeries. Her Harrington procedure was not done until she was in her 30's. She said the surgery and the beginning of the recovery are no fun, but she is very happy with the results and improved quality of life now. She indicated that her clothes fit better, she looks better cosmetically, and she feels that she breathes better. She also said to do everything they tell you and she said that walking is very, very important even if you do not want to at first. Maybe you could request to talk with a previous patient or two from your doctor. It has helped me feel a little less apprehensive. Personally, I feel like I cannot go on like I am, and I have to try and improve my life. I taught group exercise from the time I was 18 until October of last year when I finally had to stop because of the pain. I also used to lift weights consistently, and I was a fitness competitor. I have deconditioned and gained bodyweight and bodyfat. I am unhappy like this. I believe that I have a chance to return to fitness following my recovery. Withouth the surgery, there is not chance of return. For me, surgery is the only option. I am not a pill person, but I am considering anti-depressants until the surgery and hard part of the recovery are done.

    TerryB

  5. #5
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    Years after I has my first surgery, my mom asked if I resented having it done. I told her that I was glad I had it, because without it there was no way I would have lived long enough to get married and have my 2 daughters. When my youngest daughter developed scoliosis and reached 45 degrees, I didn't hesitate to schedule surgery for her. There are times when she resents having the surgery, but then she remembers the pain she was having before the surgery and changes her mind. A lot of her resentment comes from how a teacher embarressed her in front of a class after she had her surgery.
    When I had my revision surgery, I had less problems because of going through it once before. If you go in with a positive attitude, you will do much better. Plan ahead, freeze a bunch of your favorite meals so you can quick heat them up when you get home from the hospital. Have all you comfort foods around the house also. (Just don't over do it on the food as it will be a couple of months before you can exercise again.) I would also talk to your doctor about donor bone instead of letting him take it from your hip. My first doctor used bone from my hip and I have a lot of pain in that area. My daughter had donor bone and did very well with it (she calls it Sir Francis). Good luck with your surgery
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  6. #6
    Join Date
    Apr 2006
    Posts
    227
    You all are SOOOO wonderful! It is so nice to talk to people who know where I am! Discombobulated (by the way - I LOVE that name) I agree with you that I have to make a decision to LIVE my life the way I want - the rest is in the surgeons (and God's) hands. I really was feeling quite down - as the full force of my decision hit me in the face. You all really helped to bring my spirits up. THANK YOU!

    pmsmom - you're right that I need to focus on how to get ready now - the decision has been made - triple guessing myself is only driving me CRAZY!

    Terry B - we'll make it! I've found a couple on line here that have my same physician so it's helped reading their blogs. Looks like April is going to be quite a month for us both.

    THanks everyone for the cheery notes!
    Always Smilin' (especially tonight! - THANKS)

  7. #7
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Always,

    It helped me so much prior to surgery talking to other patients of my surgeon. They were so wonderful and spent lots of time on the phone with me, and I even met one in person who showed me, 'look I can bend over and touch the floor.'

    Try to use your time to get yourself in the best possible shape. I know it's so scary; I was absolutely scared to death, and I wondered if I would ever wake up again. I spent many sleepless nights up scouring this message board. You will get through it. Ask as many questions and vent to us whenever you want. That's what we're here for.

    Good luck to you!
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  8. #8
    Join Date
    Nov 2008
    Location
    Greenfield, WI
    Posts
    414
    Quote Originally Posted by always smilin' View Post
    I set my surgery date for April 28th. I'm SCARED to death. How do you really know if this is the right decision. Sitting with the doc, I actually started crying (and thought I had my act together). 8 hour surgery - he says he will need to go through the front (anterior) and back (posterior) and may need to take bone out of my good hip. He'll take out the Harrington rod and replace it with titanium - he hopes to spare 2 discs in my lumbar. (I may end up with 2 more scars plus a longer back scar) It's so overwhelming to hear the details...what if I'm making a mistake? Some people say I'm doing what's best for me and will improve my quality of life - my husband's scared and is afraid I'll end up in worse shape. It was so much easier the first time around when my parents made the decision.

    Scared to death in WI!
    Always Smilin' (well maybe not this week)
    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34
    You are using Dr Tribus, right? I think so...Im replying to so many posts these days, I forget whats what!! You said WI, so Im assuming Im correct. Your situation seems so much like mine was. He said expect a 8 hr surgery, going in post & ant....nasty scar & messed up belly muscles, etc, using titanium rods....that was exactly my talk too. HOwever, I think Ive mentioned this a few times....but-after re-reviewing my xrays the night before my sugery, he came to the conclusion that the anterior wasnt needed & he expected to get a decent correction from the back only. I was so happy I almost cried! I fulled expected the full 8 hrs, back & front & was mentally preped for this when he gave me the news 30 mins before I was rolled into the OR. I dont know how often this happens...but maybe you will get lucky too. My surgery was done in 4 hrs! I did loose quite a bit of blood....I needed 6 transfusions....4 during surgery and 2 while I was in recovery. A little scary after the fact but I didnt know til after it was done! lol

    Well, enjoy the next few weeks....do LOTS of fun stuff. Go sky drivng, mountian climbing....snow boarding...lol...kidding. YOu will be fine!!! Take care!!!
    Lynn -30.... something
    DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
    At age 26: Thorasic 48*/Lumbar 50*
    At age 34: Thorasic 58*/Lumbar 60*
    Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
    UW Madison, WI Hospital
    **AFTER: less than 10* Thorasic/15* Lumbar**

  9. #9
    Join Date
    Apr 2006
    Posts
    227
    Thanks Lynn...Yours and mine do sound the same..did you have Harrington Rod removed too?

    I'm bracing for the worst - but that would be absolutely AMAZING if he changed his mind beforehand - maybe he has to give worse case scenario just in case? I suppose I'd rather tell patients the worse and end up with it better?

    Did he also tell you that you may need to go to a rehab center for 2 weeks - NO WAY - I refuse! I told my mom she better kick my butt so that I can get out of that hospital and HOME where I belong!

    Thanks so very much for your response - you don't know how every little response helps me gain confidence!

    Always Smilin'

    (Also, Lynn, I did send you a private message last week - hope that was OK)

  10. #10
    Join Date
    Feb 2009
    Location
    SE Ohio
    Posts
    3
    Smilin',
    Hi, this is my first post as I am new to this forum.
    I read your post and I thought that I will probably be typing the same post sometime in the near future.

    I'm just now realizing that a revision surgery is most likely in the cards for me. I'm trying to re-educate myself about new procedures and searching for a surgeon.

    I had my first surgery in '79 when I was 14...I'm 44 now. I'm having alot of pain these days, I expect that I need to prepare myself for the inevitable. I agree that it was easier when my parents made the decision to have have surgery the first time.

    I just wanted to offer support and say that I understand your fears about impending surgery. Since I joined this forum, and began reading everyones stories, I have shed many tears just thinking about what lies ahead.

    The uncertainty is so scary, do as others have advised and post here.Write your questions down you want to ask. Naturally your husband would have concerns too.

    Please try to remain positive and just know that you'll be looking back on this experience in a year or two and being so glad you had your surgery.

    You sound determined to recover as soon as possible, I pray that your do. I'll be looking forward to reading your follow up posts as I prepare myself for surgery in the near future.

    Good Luck and may you alway be "Always Smilin'"
    Last edited by Carla's Back; 02-25-2009 at 11:34 PM.

  11. #11
    Join Date
    Nov 2008
    Location
    Greenfield, WI
    Posts
    414
    Quote Originally Posted by always smilin' View Post
    Thanks Lynn...Yours and mine do sound the same..did you have Harrington Rod removed too?

    I'm bracing for the worst - but that would be absolutely AMAZING if he changed his mind beforehand - maybe he has to give worse case scenario just in case? I suppose I'd rather tell patients the worse and end up with it better?

    Did he also tell you that you may need to go to a rehab center for 2 weeks - NO WAY - I refuse! I told my mom she better kick my butt so that I can get out of that hospital and HOME where I belong!

    Thanks so very much for your response - you don't know how every little response helps me gain confidence!

    Always Smilin'

    (Also, Lynn, I did send you a private message last week - hope that was OK)
    Of course thats ok!! I thought I replied to you?! Shoot! I will have to go back & check it out. I really need to clean up my in box. You can write me anytime!! Hope you have a great day!
    Lynn -30.... something
    DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
    At age 26: Thorasic 48*/Lumbar 50*
    At age 34: Thorasic 58*/Lumbar 60*
    Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
    UW Madison, WI Hospital
    **AFTER: less than 10* Thorasic/15* Lumbar**

  12. #12
    Join Date
    Sep 2008
    Posts
    336
    Quote Originally Posted by discombobulated View Post
    I have to agree with you, about it being so much easier when parents made these decisions. Marian - I think it's been said around here before, but please know you are giving your daughter a Gift by taking the weight of this decision from her. Please try to look at it less from the perspective that you are deciding to subject her to painful surgery, and more from the view that you are saving her the agony not only of curve progression but also of making this decision for herself in a few years. I'm only truly coming to appreciate how difficult it was for my parents to make these decisions for me during my childhood/adolescence - and what a blessing it was.

    Best wishes for your surgery, Smilin'. Take care.
    Thanks, discombobulated--it's still not easy. I have to go back and reread my pep talks to others from time to time. It's easy to give the advice, but I have to move it from my head (I know this) to my heart.

    Marian

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