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I'm ruined... spinal diseases and Chronic pain won!!!!!!

ToYoungforThisTToYoungforThis Posts: 150
edited 06/11/2012 - 8:31 AM in Chronic Pain
I have not logged on to Spine Health much threw my last few surgeries. Can't remember the last time I even posted anything. The truth of the matter is I am a complete MESS. I am in the middle of recovering from my March 26th lumbar surgery hardware removal and some minor repairs.

My 2 week check up was told I had a marrow myelo prolifeative disease, meaning i have a bone marrow disease in my spine. This is new and something I will have to have treatment for as soon as they find out which is the best at this point and stage of disease. This might be some of the reasons for all the spine issues I have..

While getting tests done for MMD found out I am in need of a new cervical fusion asap so we scheduled that surgery in a few weeks. My concern is that i know i have more pain issues in arms than just neck, so am scared that i will have another surgery and still be in pain, but the stenosis is so bad that I can't wait any longer for treatment.

I have had so many surgeries I can't find the strength to be happy or even go threw this anymore. I'm 31 and this is surgery number 10, I use to be so proud of how low of pain meds i was on and now I am so depressed on the amount of meds in general I have to take.

Have I mentioned the pain OMG its so bad but I hate to even say the word PAIN, another thing is not fair that I can not get pain relief that often and not sure if this is ever going to get better?




  • Wow, you are going through quite the ordeal. I am so sorry for all of your suffering. I hope that they do find something to help you with your newest development, as well as something for all the other things going on. I don't know what to say, except we are here for you to lean on for support, and hopefully a little comfort. Warm wishes to you.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • hi! :H have you considered that there might be a stopping point for your surgeries? :? how many become to much and don't help but hurt now? have you tried every other option? :? remember, we are here for you and support you no matter what!! >:D< all the best and i hope you are feeling better soon! :D Jenny :)
  • WOW
    you have been through it hun .what can i say ??
    just keep smiling .i know how bad constant pain is as i have it myself .again what can i say?
  • I am so sorry you are going through so much. I can relate. I have had probably 30 surgeries since 1985. Everything from bilateral macetomey,hysterectomey,shoulder decompression,carpal tunnel,reconstructive surgery, two level PLIF, biopsy of sacrum, gall bladder. So I know what its like to want to throw in the towel. I know how hard it is to keep going. You have to remember those 3 young children that I am sure mean the world to you. I started my problems at 20, had bi lateral machectomey at 25, and it has all gotten worse. But there have been some good years in there too. I am 49 and 7 of my last surgeries have been in the past 2 years. Hang in there. I hope you know by this that there is someone out there that understands. If you every need someone, I will be there for you. I know how hard things must be for you and want to help or just be there for you! >:D<
  • Hello Paula -

    It's almost unbelievable how much you've been through to this point, but I give you ALOT of credit for finding the strength to continue to do so like you obviously are!

    Your ability to withstand the pain and disability is certainly inspirational, and I personally can say that every time I even think of complaining about my situation...I'll think of yours and stop complaining in a heartbeat!

    Hang in the Paula and take one day at a time, and remember that ANY morning could be the one that you happen to wake and realize that you're feeling so much better than you had in years! Let that be your hope, best wishes and blessings to you!

  • Thanks for all the kind words. I just had to say how i felt last night. It sounds so out of wack saying bout surgeries and knowing that im not at the end. I wish i could say yes i do see a stopping point soon for surgeries but i do not. I know I have 4 more to go and then i will never agree to another surgery if possible. Its not like im crying from Dr to Dr for surgeries. I have a team of Dr.s that i see. Every visit every time there is always a room full. Its been like that for the last 2 years. I can not afford for a single Dr to make decisions for me. everything goes smooth when every Dr. knows what is going on. But fact of the matter is my diseases have really taken a huge part of my life i just wish i could have a chance to be me again.

  • It's entirely understandable to be feeling the way that you cuz geez...anyone in their right mind would be! :)

    It's great to hear that you've got a "team" of Doctors in your corner and I have to say that I'm blessed that way as well...the only difference being is that they've never all met with me inclusively like that in a conference room type setting. If I were you, I'd be asking them to devise a detailed plan for my future, requesting that they only operate when completely in agreement upon its necessity. It sounds like you're in good hands and I'm sure that's most comforting to you!

    You can almost look at your situation as being a war, and each one of these impending surgeries is just ONE battle in that war. Perhaps if you look at it that way, you'll see that winning each "battle" gets you just one step closer to one day winning the entire "war"...and also might help you focus on all of the victories over the enemy that you've already won, giving you greater courage and confidence as you head into the next battle. That's all kind of corny I know, but it is a fair analogy if you think about it.

    Take care Paula and give yourself alot of credit...you're definitely one very strong lady!

  • hello Paula,
    You've got alot on your plate.What will the treatment be for your new diagnosis? More surgery?
    You're right ,you are too young.Have you had the same surgeon for everything? You must be a pretty tough cookie...lots of people(men included)would have folded long before now.I'm not familiar with MMD,but it doesn't sound fun.You're right to post here though,there's something about this kind of support;the kind that kind identify with at least some of what you've been going through.I sincerely hope you find some good answers and some good pain relief. Take care....Sagehen
  • Paula I'm so sorry you're going through all of this. You're right, you're much too young to have all of this happen. Perhaps it's the myeloproliferative disease that is causing all of the problems in your spine and arms. If they can get that under control, perhaps you'll stop falling apart so much. I seem to have one thing wrong after another, but I'm nearly twice your age. I wish you the very best and pray you will get the help you need to get well and pain free.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Paula,
    I can't believe you are 31 and been through all that. I ask the same as another member, were all these surgeries in the same place? What was the original diagnosis?

    You are certainly at the right site for support and a wealth of information to read about. Are you on disability? Sure sounds like you should be! It is very important that you seek counceling for your emotional pain. Having someone to look at, in person, that you can release some of this sadness and frustration to would be good for you.
    Do your surgeons have you on any depression meds?
    Cymbalta? What pain meds are you on?
    I think it is awesome you have a "team" of doctors.

    I have never been that lucky and just to know there are practices out there that believe in that is amazing. How long will it take for the doctors to know what your treatment options will be for the MMD?

    You are obviously a strong young woman. Keep the faith! We are all here for you.

    PM me if you would like to "chat"

    God Bless....
  • Thanks everyone for the support it always helps reading others words opinions and thought.

    To let you know that no all my surgeries have not been done by the same spine Dr.. I have been threw BAD times for sure with Doctors. I had emergency surgery in Feb of 2006 with no prior treatment for any back or spine issues. I had the attending spine Dr. That same Dr did my 1st 3 surgeries. I had issues with all surgeries he did. I found another Dr and he did 1 neck fusion and passed away before my 6 week check up. Then i couldn't find a Spine Dr to accept me due to having surgeries in lumbar and cervical. So I had to wait to be accepted into University of Colorado Hospital's spine clinic and all surgeries from there have been with the same Dr.s.

    As to the depression meds i do take them I also have a Dr. that is in the spine clinic that goes to all my apts and then we have a meeting every week about how to deal and accept what is going on. He is a chronic pain spinal cord injury therapist Helps with the depression that comes along with spine diseases. He has wrote over 20 books on pain meds and chronic pain, and spine cord injuries and diseases my insurance would not pay for him so I signed release forms and he has all rights to write bout my condition and treatments. He says that it will help with others my age that my need the same treatment. But the big kicker here is that I am also loosing my mom to cancer. She has been fighting small cell cancer for almost a year and seems that the treatments are not working. This is a hard thing to accept my profile pic is with her last year when she 1st lost her hair. So I try so hard to keep my head up and be positive but seems like all odds are not on my side.

    As for the MMD i am getting a bone marrow biopsy next week, not to thrilled bout that since they have to drill in hip bone to collect marrow from there, my hips both still hurt from them getting bone graph for my surgery 6 months ago, still very tender. So I will see what happens after they get results back then we can start treatment.
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