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Hi Everyone 3 wks out from total spine fusion revision

PhoenixPPhoenix Posts: 10
edited 06/11/2012 - 8:46 AM in New Member Introductions
Hi to everyone :)
Tomorrow marks 3 wks. out from my 5th spinal surgery. I've had spinal problems and pain from a weird gentic birth defect with side effects of scoliosis, arthritis, blown-out discs, etc. What I didn't know was that my condition was degenerative and it caught up with me about 5 yrs. ago, having literally eaten all the bones in my spine from T-10 to S-1 and a tch more and some collateral damage to go with it.
This latest surgery was a result of fusion failures at the very bottom and the first few top levels from last Nov's surgeries (total spinal fusion, PLIF and ALIF), plus a blood clot that had formed near the top, liquified, formed its own pocket to sit in along the left side of my ribs, separating the muscles from my rib(?)bones. The removal of the clot and its pocket is making my left side and arm squawk big time while I'm healing, OUCH!

I'm old and mean as dirt (well, almost LOL), usually very upbeat, pretty energetic, happily married, 5 grown kids, 1 precious grandbaby who lives out of state :(, pretty shy but LOVE people, and have to admit getting pretty blue due to such an extended period of extreme isolation & lonliness. I would love to talk with people who KNOW this particular roller coaster we are on.

Truly, this awful lonliness has been the very worst part of it all. Who knew so many F & F would vanish like smoke? especially family!! Still trying to deal with it.
Cue the tears, which means its time to stop my rambling! I'm REALLY looking forward to getting to know everyone, learn and hope I can offer some support in return.


  • Hey Pheonix,

    Welcome to spine-health, glad you found us. We most certainly understand what is all about. We come here to share are downs and up's and experiences as we know them. Have a look around and there is plenty to learn and get involved with. You have lots of experience behind you and know the road is rocky and long, so lots to share with others riding the same roller coaster.

    I might also suggest that if your bored and lonely to check out the chat side. Individuals go in and share medical, have some laughs and just whatever may be the topic of the day.

    I am glad to hear your on the other side of surgery, lets hope that is the last and you get some relief from the surgery.

    Just thought I would stop by and welcome you to spine-health. Keep us posted on how you get along and if I can ever be of assistance to you don't hesitate to pm me. Take care.
  • Welcome to Spine-Health. If you're looking for others who know exactly how you feel and what you're going through, you've found it!

    Almost everyone on this site has felt the loneliness, lost friends and have had loved ones turn the other cheek while we battle with our bad spines.

    So, I justed wanted to pop over and welcome you and reassure you that you indeed are among friends, those that understand and won't ignore you because you're fighting hard with your spine.

    Take care,
  • Tamtam & Cath!! I really apprciate it. It does feel pretty wonderful to find people who REALLY know what we go thru and not have to constantly explain why I could sit and have coffee at the kitchen table yesterday but cannot do so today kind of thing, kwim?
    It just feels so great not to feel so terribly alone. Being here has already put a pep in my (soft) step!

    I'll check out the chat room when I'm a little further down the recovery road and not quite so drugged up - too hard for me to keep up their fast pace right now.

    I wish I could say no more surgeries, but the dr. has already warned me that I'm looking like I'll need at least one hip replacement surgery, just because of the spine problems, possibly both hips and because I've had failed fusions already, I'm at high risk for more failures and problems, arrrrgh.
    That worries me a LOT because I'm not sure how much more my hubby can take. I know I'm about on my last thread with all these constant surgeries but I've never seen HIM so wore out with it before. If I say something like "If I have to have another surery" he'll actually interrupt me to say "There will BE NO MORE SURGERIES".
    Anyone know what the divorce rate is for people like us? Scares me to death, the thought of divorce. Before all my back problems happened, we were the couple everyone envied because we were so VERY happily married. Now, I'm not so sure... I HATE what I've done to him because of my stupid body problems :(
    Okay, more tears, time to bail again. Ttyl. Thanks again girls (oops if you are a guy Tamtam, lol)
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i to have been a pain patient since i was a child...i had polio and that did alot of damage to my lower back.. i am so lucky that i have not had to have 5 surgeries!! i am sorry for your pain and what you have been through... it is a long life of doctors and everything else that goes with being a patient!! good luck to you! i hope you enjoy the forum, please make yourself at home! drop by anytime! my mother just has hip replacement surgery at 72 and is already up and about!!! all the best!!! Jenny :)
  • First, Tamtam is indeed a lady, and a great one at that.

    I understand about the hubby. I've been married for 23 years and my hubby has been very supportive during all my problems. However, with that said, I'm fairly sure I'll need another cervical surgery in the future (but who really knows), and if I mention it in passing when my hubby is nearby, he'll say "Oh, great...".

    I know all too well he wants this to be done, but I'm of the mind that it never will be done and I'll battle spine problems the rest of my life. If it doesn't happen, then I'll be pleasantly surprised, right?

    Try not to worry. If you've been married a long time like I have, he'll be with you no matter what happens. My hubby and I have occasional discussions about my problems and he assures me that he's taken his "in sickness and in health" vows very seriously. Maybe just having talks about it will help you feel comfortable that he'll stay with you through it all.

    I think what helps too is that I listen closely when he talks about his aches and pains. My hubby is in his mid 50s and has joint issues (I suspect arthritis, of course, but going to a doctor? NO WAY!), gout and tendonitis, so when he talks to me about how he's hurting, I'm always there to listen. Long ago he said to me "It's time for me to hurt now." I got the hint, he needs some TLC from me too, so I put my pain on the back burner when he needs to talk about himself.

    Take care of yourself, Phoenix and I hope your recovery is going well. Keep up with the restrictions and don't overdo it when you're having a good day - that's our worst enemy post-op.

  • Hello there and welcome. I am recovering from my first and hopefully (last?) surgery. I have no idea what it is like to undergo so many surgeries as you have had to go through. I am so happy that you found this site. I found myself trying to talk to friends and family about my feelings, and though they try to understand, they cannot totally relate. This website is wonderful. I find myself looking forward every day to logging on and feeling surrounded by people who truly understand what this rollercoaster is like. I wish you the best outcome with this last surgery and any time you want to rant, cry, laugh, share, you will find someone who will be here to listen.
  • I truly do feel like I've found a "family" of people who really understand - what a huge relief!! I can't thank you enough for your understanding and support :)

    Jenny, I am so glad your mother is doing so well! I have always heard wonderful success stories about hip replacement surgeries, which a big relief. Very much UNLIKE the horror stories people tell you the second you mention back surgery! Why on EARTH do people tell you stories like that, that just scare you to pieces??

    Today I started filling out paperwork to apply for SSDI and its been terribly emotional for me. I guess it's because it's the first time I've really had to face the hard fact that I am permanently and irrevocably disabled. My entire life I've just ignored the pain and gone about my very full life, flatly refusing to let my condition stop or even slow me down. Then I hit the wall - HARD - and that was that. My old life gone forever in a blink. No chance of even coming close to what I had always been able to do, due to the total fusion. The very worst is never being able to carry my grandbaby around again. Can't even hold her when I'm standing.
    I apologize for the pity-party complaining. The pain has been extra bad today and I am just WORN OUT with it.

    Cath, you are absolutely right about the over-doing it being the worst enemy during the recovery stage. I try SO hard to take it easy, but it's so difficult. I've always been a high energy person and this sudden STOP has been pretty difficult. I still have all my old energy, just no way to use it up. I took up scrapbooking and altered art and am very passionate about it, but where to glue a paper flower won't ever come close to my old activities.

    I think the one thing I HAVE done right is to listen to other people when they complain about their aches and pains. I think I listen a lot better now than ever.

    And I think you're right Cath - having an open and honest discussion with my husband would probably help a lot. I've just never seen him so upset, worn out and so ADAMANT against any other surgeries, even tho he heard for himself the surgeon say that I'm probably looking at a few more surgeries, so I'm terribly confused and upset. He's also made a few rather disturbing statements that have scared me pretty badly.
    God, how much can this disease rob me off?? It also has to rob me of my self-confidence, self-esteem, self-worth too!!??

    Okay, time to stop. Sorry girls. Too overwhelmed, too tired, too much pain, too scared. I'm sooo sorry. I should have just waited to respond until I was in a better state of mind.

    And thank you Lisa for the welcome and support. Don't mean to upset you honey, I'm sorry. I'm okay, no problems. Just a temporary rant and rave :)
    ttyl girls. Hope you all have great and pain easy days tomorrow! xxx
  • Sorry to hear about your pain and things are going rough right now. I know about disappearing F&F very well. No friends we're your friends! feel free to vent away it makes you feel better. Take care and hope you're feeling better tomorrow or sooner. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thank you. I was feeling like a big dope for being such a big cry-baby. You've made me feel a lot better. I'm usually such an upbeat person but for some reason when I get on here, I feel safe enough to let my guard down and spill my guts about the more ugly stuff that I can't share with anyone else.
    Thanks honey :)
  • there is plenty of time to get it all done, the housework, the paperwork and your work on yourself... slow down a bit and relax some!! the SSI is going to take some time and may even require a lawyer... don't feel bad about coming on here and ranting and complaining. that is what we are here for... so please be comfortable and remember we are here for you!!!! Jenny :)
  • by strangers who are friends at the same time!!
    I've been so afraid that my "woe is me" complaining was just going to be seen as pity party crap and that's NOT what I mean to do at all.

    It just feels like too much thrown at me - too much for too long and too heavy. Filling out the SSDI forms has been the worst of it right now. A formal, permanent declaration that I am no longer a contributing member of society. Too hard too handle, yet I have to meet the deadline to submit the paperwork. I can't even think about it without dissolving into major tears and upset, which in turn upsets me more - WTH is the matter with me?? Why can't I just get thru all this stupid paperwork and be done with it??

    I actually know the answer, it just doesn't make it any easier. Working for me was an extremely hard earned PRIVELEGE, as both my parents were hard core old world, believeing girls do not need an education and certainly would never, ever go to college or work!! Their ONLY expectation for us was to marry well. I was made to quit shool at 16, as was my younger sister. We were both in our mid to late 20's before we could break away from our mom enough to finish getting our high school diplomas & then start on our own paths (with MUCH resistance from our mom and brothers). After a particulary ugly divorce and un-ending harrassement from my ex (they have laws against that sort of thing now, but they sure didn't way back then!!), I chose to make my very young children come first in my life and worked my way up the job ladder, the hard way, taking one crappy job after another, usually 2, 3 & sometimes even 4 jobs at once, to make ends meet, until I finally landed my dream job: great company, great pay, terrific benefits & best of all, full medical benefits for my kids!! (my sister chose to work her way thru nursing school but she had a husband to take care of their little ones), so we both had a hard way to go of it, but we MADE IT!!! Finacially independent - independent in every way :)

    To this day no one but my sister and I have ANY idea of just HOW much we value our education and our careers.
    And now all that is gone. Blink - gone. Forever. And filling out these forms is an in your face reality check that everything I worked so hard for, all those years, is just.... gone. I can't even stop sobbing long enough to get thru more than 1 or 2 questions at a time on the stack of paperwork. If we could make it without it, I most certainly would!! But we are just barely hanging on financially. The loss of my pay along with the endless medical bills is more than my husbands pay can cover. We've cut everything down to bare bones, I've cashed in my 401K, used up all our savings, you name it. THAT guilt is another story :(

    So there you have it - my current dilemma and major upset. I know that once I can pull it together, and I WILL pull it together, I will feel soooo much better and can put it down and walk away from it. I just have to find some way to get a handle on it long enough to get thru these forms. Things like this don't usually knock me off my pins so easily, it's just the feeling of having my nose rubbed into all the hard facts of just how much I've lost, forever.
    I WILL find other ways to be a productive member of society again, in some way, shape or form, eventually. I'm a long, long way from giving up - that is NOT within me. It's just these stupid forms and swallowing a lot of pride. I'll eventually see that taking a realistic look at my circumstances may turn out to be a good thing. Eventually.

    Thank you SOOOO much for listening to my sob story. Maybe now that I have gotten the brunt of it off my chest, thanks to all of you, it may be easier to tackle the paperwork and feel ever so much better! xxx
  • your in the right place for support and advice ,nice to meet you
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