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I need encouragement

Found out surgery #4 is happening next month. It should be a comparably small surgery to what I have already been through, but I'm still feeling overwhelmed. My appointment was this morning. I just got home, decided to take the day off and try to get my head in the game before my two small kids come home.
33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.


  • DebilynDDebilyn Posts: 50
    edited 02/22/2013 - 7:36 AM
    Hi there... and welcome to the forums! Haven't been here long myself... but my surgery is set for March 4th. We can all use all the encouragement we can get for sure.... and everyone here understand what you're going through.

    I know it is overwhelming... and it has to be tough having 2 small chldren at home. Just hang in there... we're here for ya! Do you have a surgery date yet?

    You should jump on the March Surgery Buddies thread... There are a few of us so far...
  • I am sorry to hear you are facing another surgery. May I ask why and what? You are always such an inspiration to others on this board and I want you to know that the support is a 2 way street! I can understand wanting to head wrapped around this before your children come home. I have been dealing with that myself right now. I am facing neck fusion and am not even a year out from my 3 level lumbar. My daughter is scared and I hate it. I have decided to try and hold off until the summer so I can send her to her dad for vacation. Would like her not to see me in a hospital again or the first days of recovery. Just too much for a little girl. My son is young enough where I think he will be fine.
    Back to you, again...you are always a positive voice on this board and I know you will come out okay. You are strong and you have a great attitude for the trials you have faced up until now. Just another one on the crappy spine hand you've been dealt. Please fill us in on what needs to be done and when you are planning on having your surgery. Peace to you and yours, Ellen
    3 level fusion L3-S1 July 23, 2012
  • Ahhh... thought I had seen the name in reading other posts. Sorry about that! Though you had just joined.
  • Debilyn: I actually just posted on March Surgery Buddies... I guess great minds think alike. I am so grateful for all support I can get.

    Ellen: Thank you so much for your kind words. I am naturally a very positive person and I know in a few days I'll be ok and more upbeat, but today just hit so hard, and to be honest, I'm not sure why because I have been through worse.

    Basically in 1989 (at age 9) I had some major surgery for scoliosis. I think somewhere between t2-l3 hardware/fusion. The hardware used then was stainless steel which is no longer used (or at least not for the spine surgeries I have needed). Unlike the old Harrington rods, I had a procedure called cotrel dubousset. My parents were told that the hardware would be with me for life and barring any major life altering trauma event, would never be removed. My pediatric surgeon was incredible; I managed to have a relative normal childhood, and young adult hood. Unfortunately I developed a 74 degree curve in my lumbar underneath the instrumentation and apparently a kyphosis curve that was worse than that. Not only was pain an issue, but the curvature was causing severe weakness in my legs etc. This past summer I had a total of 2 surgeries and I guess you could say a radical "spinal revision"? Theoretically the surgeon wanted to remove all the hardware, but since I was already undergoing two day long surgeries, he didn't have the 'time" without subjecting me to another surgery. Plus the top fusion had been stable since childhood. Basically where he clamped the titanium to the stainless steel and one of the clamps has come undone. Since this is so long already I won't bore with the details of the fact that this wasn't the surgeon's fault or even the hardware failure as it is there was just no "great" way to achieve what needed to be achieved so they did the best with what they had. As it turns out I have started to fuse, but I'm not as fused at this point as the surgeon would have hoped for, but again, it has started.... so basically there are three options...

    #1 Re clamp the rod back using the exact same clamp knowing it will most likely come 'un clamped" again, but hoping it will buy me another few months to achieve more fusion.

    #2 Use a different type of clamping system. However, the surgeon worked with the hardware engineer during the surgery to choose the best clamp for the situation so currently he doesn't believe there is a 'better" alternative. He is still going to see if something better can be engineered.

    #3 take out the rest of the stainless steel but this would be a much bigger/longer surgery and hopefully NOT going to be the recommendation.

    I guess the good news in this is that the surgeon is going to "beef up" some of the areas that aren't fusing as fast as hoped while he's in there. And option 1 and 2 should only be a couple of days in the hospital compared to the 5 weeks this past summer.
    So not sure of the surgery date, should find out next week.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • dilaurodilauro ConnecticutPosts: 9,875
    that weighs heavy on your mind. The decision only to have surgery is an intensive personal task. Your mind can go off into a hundred different directions while deciding on the surgery or not.

    Now, once that decision is made, one weight is removed from your mind. However, another weight is now being put on your shoulders. They include

    - The What IFs?
    - The Whats going to happen after surgery?
    - How is the house going to be managed while you recover?
    - Who is going to take care of the children?
    - How am I going to get around?
    - Many more

    Some of those weights only you can work through. The others can be work with family and friends. I know before each
    of my surgeries, I had all those fears and weights. I started putting them all down on paper. I created a list of these
    weights. So , then I started to work through each of them. When I looked at the entire thing, it was like 5,000 pounds
    sitting on my head. But once I took each and handle it, it was like removing a 100 pounds at a time and in a short time, the weight was really easy to deal with.

    As long as you have trust in your surgeon, trust in the Hospital, the Nurses (who really do most of the work) , the Hospital staff, then that piece is good. Then its the confidence in the love and support from your family. That will be a given..

    So, the only thing you have left going into surgery, is your own mind playing whatever it whats to play.

    Think good thoughts, good thoughts will stay....

    Good luck, not that you will need it, but my best wishes anyway.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • You have really gone through it all, I really hope this surgery bwill be a big success for you. I will be praying for you .Stay srong and know we are hear for you Kathy
    Kathy B
  • Thanks everyone. **sighs** I plan to eat lots of cupcakes this weekend, and then get busy planning.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • jellyhalljjellyhall Posts: 4,372
    edited 02/22/2013 - 12:56 PM
    I was very disappointed to hear that you are needing more surgery soon. I know that any spinal surgery sets us into worry mode (or panic mode for some!).

    Hopefully this time your surgeon will be able to solve the problem and get your spine stable again. Then you can finish off the job of fusing.

    At least this time you have all or us to support you through. :-)

  • I'm so sorry you're going to be dealing with another surgery. Like Ellen said, you've been such a great support to a lot of the people here, I hope we can do the same for you. I wish you the best!
  • To her that you have to have another surgery. You have certainly been through the wringer already and I cannot imagine being in your shoes. From what ive seen you are such a positive person who provides so much support and encouragement to others.. this just Sucks to hear you have to endure another go of it. Keeping you in my thoughts.
  • AllMetalAAllMetal Posts: 1,189
    edited 02/23/2013 - 1:31 PM
    Today has been a much better day.... AND... I'm pretty sure I can con my husband into buying me new satin sheets! Too bad no one ever told me about these before. I've seen several people post about them on here. Now... if I can just find some that are purple....
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • You were the first one to respond to my first post and appreciate it! I will be 10 wks. out on Tues. from my L4-5 fusion with cage. I'm doing very well, the only issue I have is the residual nerve pain in my lower sacral area. I'm a x-ray tech, so have seen it all....post-op patients throughout their recovery and feel very fortunate with my outcome. When I see your film, I have never seen that much metal in one person in my life. And I have been a tech for over 27 years! I give you a lot of credit. I wish you much luck with your upcoming surgery. What are you having done, again?? If you have made it through all of the previous, I'm sure you are a very strong person. I know I have my down days, but I just have to tell myself at this point, I'm not going to feel the progression of getting better as much as I did in my first weeks of recovery. I still get nervous about the nerve pain...like is it going to get better? Then I read others posts on this site, and get a little more hope and try to get a positive attitude. So good luck, I'll be thinking about you!!! I haven't been able to work for about a year, and I am going for a job interview tomorrow, part-time, just what I am looking for! I'm a bit nervous though....just hoping I can put in a 8 hr. day!!
    radtechtam MIS L4-5 Fusion
  • I have had my fair share of comments from the radiology department.... I had a CT scan done at a hospital and 6 months later had to have a myelogram. The hospital was switching over software and some how my orders got lost in translation and I had to wait for quite some time before the CT. The tech was so friendly coming to check in on my husband and I. We had several small conversations. Then as soon as I came out of the scanner the same tech I had been talking to for like an hour came running in saying, "I know you!!!!" lol. Well, he knew my back.

    Nerve pain: It does get better, I promise. I REALLY struggled with nerve pain. I was told I would see improvement up to a year, and really some people continue to improve after that. It was hard not to get depressed thinking about a year with that kind of pain. I'm happy to report that around month 2 I did see "improvement" though it was still quite bad, but by month 6 my nerve pain was very much "tolerable" and continues to improve. I use neurotin as my nerve medicine. Several people on here have had problems with side effects from this medicine. I was able to "stick it out" with the side effects because I was lucky they weren't severe. I'm so glad I did. That medicine just takes a LONG TIME to work. I imagine most nerve medicines may be like this, so if you are taking one... don't give up on it!!!!

    And congratulations on your interview tomorrow! Good luck! 8 hour days are tough, especially just starting back. Hopefully though if it is part time you'll be able to recoop the next day. Let me know how it goes!
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • Get those satin sheets!!!! you deserve them, you paid your dues big time. You deserve the world what youve been through!!! We have your back stay strong!!!
    Kathy B
  • Wish you much luck and hope for your surgery! sounds like you have been through the mill. I hope this make you more comfortable.
  • Just ordered my satin sheets at overstock .com great price. Made my app for hair cut and manipedi and now have to get my glasses changed.So much to do.I need to stay busy so i wont think about surgery the 13th.I have to say thanks all. Im falling asleep better since ive been on this site.Its been a great help.I have my preop and visit with one of the surgeons coming up . I have alot of questions for them.thanks all Kathy
    Kathy B

  • AllMetal,
    I definately agree that satin sheets are helpful when you turn over. I would think that you should be able to get some purple ones on the internet.

    I am so encouraged to hear that the nerve pain can continue to improve. I knew that from experience after my lumbar fusion. At 3 months I was improved, at 6 months I was better still, at 1 year I was very pleased and thought that I was as good as I was going to get, but at 2 years out I realised that I was even better.

    Now I am recovering from a 2 level ACDF. I am 4 months post surgery. I did have nearly all my nerve pain at nearly 3 months and so went on Gabapentin/Neurontin. Now my symptoms are being masked, so soon I will start to wean right off and see what I am left with.

    Thanks for reminding me that nerve pain takes a long time to heal. :-)
  • Hi,

    First I admire you Ms All Metal! You are a trooper! Good luck with #4 and hopefully there will be no #5!!

    I am getting L3/4 discectomy on March 4th and am wondering if I really require satin sheets? I had a C-5/6/7 fusion Mar 2010 and an ACL reconstruction Feb 2012 and I didn't even think of sheets. I am reading so much on these satin sheets but I really perfer natural fabrics.
    How bad will it really be? And as far as the nerve pain goes... I hope it does just do that... goes far, far away! I almost think that the nerve pain is worse than the back pain!
    Any advise for my upcoming surgery from anyone would be great!
    thanks so much!
    And best of luck on #4 All Metal! :)

  • I didn't need the satin sheets after my C3/4/5 ACDF, but they were a great help when turning over after my L4/5 fusion.

    I suggest that before your surgery, you research and find a satin bottom sheet either on-line or in a shop, and then wait and see how you are after surgery. Then if you decide that you do need some help, you can either order them on-line or ask someone to go and get them for you. I also normally prefer natural fabrics.

    What is an ACL reconstruction? (Is it in your knee?)

    Good luck with your discectomy :-)
  • I read about the sheets after I was healing from my surgery so I pulled out my satin/silky pajama bottoms. Worked great.

    AllMetal - I'm at work so I only skimmed the messages. Wishing you the best keep us posted! You are a huge inspiration to all of us!
    Multi-level fusion L4-s1 Nov 5th 2012
    Disc surgery Aug 2002
  • Thanks guys, I did find out today that I will not be banking blood because they are not expecting there to be that much blood loss. To me that's a huge relief. Last time I banked 4 units and still had to recieve multiple extra units due to surgery lengths. So this has set my mind a little more at east knowing this is expected to be a relatively minor surgery.

    However, today I had to turn down a very exciting Summer Job (I'm a teacher). It was a science camp for elementary students, and as much as I know I "can" do it by then, I'm thinking if my fusion is already not going well 8 months after surgery, I doubt I should be that active this summer after having to already do repairs.

    And I prefer cotton sheets for sure, though I have to admit the satin sheet idea does sound very "logistical" to me, so even though I've survived worse surgeries without the satin sheets.... I think being able to move in bed easier sounds wonderful, so I'm going to have to try it. (on a side note I hate satin PJS because I always attract static electricity.) So...bring on the satin!
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.

  • Hi AllMetal,
    It's good to hear that no vampires will necessary this time! That must be a good sign that they are not anticipating a long and complicated surgery this time. :-)

    What a shame about the summer job, but you are probably right. You really don't want to risk slowly down your recovery. Perhaps you could apply next year when you will hopefully, be all recovered and ready to go!

    I also prefer cotton sheets, but the thought of satin pjs was worse than a satin bottom sheet so I went for that. It really did help :-)

    I wish you well for your surgery this time and hope that it will be a fraction of the other surgeries you have had. You have my admiration for all you have gone through and you so deserve an easy and sucessful ride this time.
    Keep thinking positive thoughts and allow everyone to spoil you. :-)

    Don't let the satin sheets make you slip out of bed!! Lol!!
  • odouglassoodouglass Posts: 264
    edited 02/27/2013 - 9:13 AM
    Wow- your 4th surgery!! However, it sounds like your surgeon knows what he is doing so you're in my thoughts too!! :) Good luck and you'll be feeling great in no time! :)
    Olivia Douglass
    MIS TLIF L5/S1 on 5/1/13
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