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Thread: a little cheese to go with my whine??

  1. #1
    Join Date
    Jun 2009
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    312

    a little cheese to go with my whine??

    I'm trying to dodge going out to dinner w/my husband. It's too cold, I'm not hungry, and I'm already in stay-at-home-sweats. But, probably my real reason is that I feel sort of down, I'm tired of the pain and I feel fat.

    Aug 25, 2009, I was fused T-3 to L-3. My thoracic curve was about 86*, and I had a good correction. Thanks to a post-op problem, I ended up losing about 30 lbs in a month. (I had been trying to lose 20 lbs for years, so this was very welcome!) By mid-Oct, I was rarely taking anything for pain. By my 1 year mark, THOUGH,I was having pain and (sorta long story short) I had all hardware removed this last Nov 2 (14+ mos post-fusion surgery). Since then, I am in constant pain - still taking oxycontin, oxycodone, Flexaril and Advil. Now, after I have been up for an hour or so, I start to hunch forward. After a few hours of being up and active (and by "active, I mean only sitting, standing, walking and showering. . . and at some point in the day, loading the dishwasher and working on the laundry) I am SO hunched over that, if you look at me from the side, I look like a "C". Also, my curve is re-curving, quickly. I have an appt w/my surgeon on V-Day - I'll be interested to see how close I am now to my "square 1" curve. Because of my lack of activity, and because I'm home so much of the time now, I've gained back many of those lost pounds. Plus, my new "how I spend my day" makes me feel somewhat "un-me". Chances are excellent that. . .I'll get to do the fusion surgery, all again, sometime in the next few months. Exactly what the next surgery will be, I'll be interested to know. . .ie, how many levels, what he'll do about the hunching issue, and if hell do anterior along w/posterior this time. I don't relish the idea of experiencing the fusion surgery again.

    Thanks for the vent opportunity. Maybe I should go get dressed and go to dinner with my husband, so he doesn't feel like he's married to a dull, no-fun, sit-at-home person.

  2. #2
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
    122
    Oh jeez,
    I am so sorry!!! I feel you on this one!! I feel the same way except that I lost so much weight that I look disgusting. I am 84 lb. Lost 20 with the surgery!!! I feel for my boyfriend too... I hate what I have become!!!
    Why did you have to remove the hardware? What happened? Are you seeing the same surgeon?? I am curious, what went wrong the first time?

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,957
    Quote Originally Posted by mgs View Post
    I'm trying to dodge going out to dinner w/my husband. It's too cold, I'm not hungry, and I'm already in stay-at-home-sweats. But, probably my real reason is that I feel sort of down, I'm tired of the pain and I feel fat.

    Aug 25, 2009, I was fused T-3 to L-3. My thoracic curve was about 86*, and I had a good correction. Thanks to a post-op problem, I ended up losing about 30 lbs in a month. (I had been trying to lose 20 lbs for years, so this was very welcome!) By mid-Oct, I was rarely taking anything for pain. By my 1 year mark, THOUGH,I was having pain and (sorta long story short) I had all hardware removed this last Nov 2 (14+ mos post-fusion surgery). Since then, I am in constant pain - still taking oxycontin, oxycodone, Flexaril and Advil. Now, after I have been up for an hour or so, I start to hunch forward. After a few hours of being up and active (and by "active, I mean only sitting, standing, walking and showering. . . and at some point in the day, loading the dishwasher and working on the laundry) I am SO hunched over that, if you look at me from the side, I look like a "C". Also, my curve is re-curving, quickly. I have an appt w/my surgeon on V-Day - I'll be interested to see how close I am now to my "square 1" curve. Because of my lack of activity, and because I'm home so much of the time now, I've gained back many of those lost pounds. Plus, my new "how I spend my day" makes me feel somewhat "un-me". Chances are excellent that. . .I'll get to do the fusion surgery, all again, sometime in the next few months. Exactly what the next surgery will be, I'll be interested to know. . .ie, how many levels, what he'll do about the hunching issue, and if hell do anterior along w/posterior this time. I don't relish the idea of experiencing the fusion surgery again.

    Thanks for the vent opportunity. Maybe I should go get dressed and go to dinner with my husband, so he doesn't feel like he's married to a dull, no-fun, sit-at-home person.
    Hi...
    Unfortunately, when the spine has been prepared for fusion, it becomes unstable if the fusion doesn't actually occur. You're probably pitching forward because of that. I agree that you're headed back to the OR. Hope that happens sooner rather than later.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  4. #4
    Join Date
    Jun 2009
    Posts
    312
    I know that the dr would prefer to wait until I'm 6 mos post-removal (May) so he could get a better view on the CT - if I can hold on for that long - but he did say he might intervene earlier, if I'm losing ground too fast. This strange posture is, not surprisingly, tough on my hips (it's as if, when I stand, I'm doing a pelvic thrust, a la Elvis) and knees.

    Pilar. . .he removed the hardware because I was have increasing pain in the thoracic area as I approached the 1 yr anniv of my fusion surgery. Please don't let this unusual scenario spook you - most people do not have hardware removed EVER, much less 14 mos after it was put in. I am still going to the same surgeon. I have confidence in him. Sometimes things don't follow "the plan", and I did have a severe curve and a 12 level fusion. Needing a third surgery is a drag, but in a couple years, this will all be a memory. (I just need to remind myself of that at times.)

    Oh. . .and I did get dressed and we went out for pizza last night.

  5. #5
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263

    Thumbs up

    I like your style mgs. You have guts!
    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

  6. #6
    Join Date
    Jan 2011
    Posts
    197
    Good lord, I am so sorry. I hope you get some resolution and that the pain reduces. Having the hunch is hard enough on you emotionally; the pain on top of that has to be so hard. I hope you can dig deep and find the courage you need to keep moving forward. ((hugs))
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  7. #7
    Join Date
    May 2010
    Location
    NJ
    Posts
    70

    revision

    Hi mgs, I had surgery in 2002, I was 59, I have all my rods,and I am bent over, due to flatback, and need revision surgery in the spring, I would hate to think what I would feel like without the rods. because they did help the S curve. Where do you live and who is your Dr. Good luck, Lu

  8. #8
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Bummer, Mgs! I'm sorry you're dealing with this. What does your surgeon thing caused the pain that led to the hardware removal? Does he think you didn't get a good fusion, or is it more likely infection? Just trying to get a picture of what can go wrong at the one-year point.

    You are clearly a fighter--with a good attitude about going through a third surgery. I hope you get it done and over with soon! And I hope the pizza was good.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  9. #9
    Join Date
    Jun 2009
    Posts
    312
    Thanks for the kind words and encouragement!

    Lue, I live in very northern IL (less than 5 mins from the IL/WI state line). My surgeon is Dr. Tribus, at UW-Madison. I have faith in him. He trained at UCSF - can't train at a much better program than that!

    Confused mom, pre-hardware removal surgery, Dr Tribus proposed 3 possibilities for my pain: non-union (didn't fuse at some level(s) ), infection, OR hardware irritating muscle. Clearly, non-union turned out to be the culprit.

    Yesterday, I asked my husband to look at my back. He had last looked at it a week ago. My spine is VISIBLY worse now than a week ago, which then was worse than a couple weeks before that. I am losing ground pretty quickly. Tomorrow, I am going to try to get an earlier appt w/the dr (I am now scheduled for 2/14), which might not be a possibility since he has clinic only a couple days per week, and is pretty booked out - their office is closed today for MLK.

    I find that I am needing more narcs now than I was a couple weeks ago. I've learned that when vertebrae move. . .it hurts! I'll be more than glad to have my revision surgery, heal and say GOOD-BYE to the opiates!! (and good-bye to the Mag Citrate! )

    Again, thanks for keeping my spirits up! This forum is invaluable!!

  10. #10
    Join Date
    Jan 2011
    Posts
    197
    Hey kid,

    How are you doing? I hope today was a little better.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  11. #11
    Join Date
    Jun 2009
    Posts
    312
    I wish I could say it's better (thanks for asking!) but I think it's just going to be this way until it's fixed.
    At this point, I take 600-800mg Advil, 3 or 4 times/day; oxycontin 20mg, morning and night; Flexaril 10 mg, morning and night; oxycodone 5mg, as needed. Lately, I seem to need 20 mg of oxycodone to get enough relief that I can do basic housework (laundry, dishes, light cooking). To really feel almost normal, I'd need 20 mg every 3 hours. . .which is a lot. . .so I usually try to keep it at 50 mg or less/day. I hope my local doc will keep writing rxs for me - long term pain management is not his thing.

    I'm telling you. . .the ladies at Walgreen's must be looking sideways at how often I'm in there to pick up a bottle of Mag Citrate. A woman's gotta do what a woman's gotta do!!

    I called my surgeon's office on Tues, and as I expected, there are no available appts before my scheduled appt (2/14) so I am on a wait list. I only spoke w/the clerical person who answers the phone for the Spine Clinic. My husband thinks I should have asked for a call from my dr, since mine is an unusual circumstance and I'm in constant, pain. I might. . .I don't know.

    My biggest fear, and the one that I try to banish from my brain the second it creeps into my thoughts, is that even after another fusion surgery, I'll still be in this much pain. Before I ever had my original fusion surgery, my husband's biggest fear was that I would share the fate of 2 of his patients (he's a dermatologist) who had had spinal fusions for scoliosis. Both women (different surgeons) ended up "back cripples" - largely bedridden, taking daily narcotics to make the pain bearable. One told him that she was considering suicide. BUT. . .hey. . .I have to believe that I'm fixable, and will have a good outcome. If there's a time that it's important to keep an optimistic attitude, it's now. All of us, who are pre- and post- fusion surgery, know that.
    Last edited by mgs; 01-20-2011 at 08:40 PM.

  12. #12
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    I feel so badly for you!
    Keep looking forward to a revision that will successfully treat your issues, and you will be on your way. Keep remembering the numbers-the majority of people are happy with fusion, and next time, you will be in that majority! Lots of luck, we are pulling for you.
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  13. #13
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    I hope you do ask for the doc. to call you. You ARE a special case and if he's a caring man, he will be happy to phone you. I'm hoping you can get this surgery over and done with quickly Mgs. Good luck!
    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

  14. #14
    Join Date
    Jun 2009
    Posts
    312
    I lucked out: there was a cancellation, so I saw the surgeon today. He did a scoli x-ray and yes, vertebrae are moving. What I also noticed on the lateral film (which I looked at when I was still over in x-ray) was that now I have a marked kyphosis - much worse than it's ever been - which the dr didn't comment on. Even though I expected to see a marked loss of correction, I was still taken aback when I actually saw my spine on x-ray.

    He spent several minutes looking at today's x-rays, and looking back at previous views. He said that something is wrong, but he can't tell the "where" of what's causing the problem [with just an x-ray] and he then said that I'm unique, that he's never seen this happen before.

    The wait-for-6-mos-for-a-CT plan is now out the window. On 2/14, I have a CT, then see him. I would guess that I'll get on the OR schedule at that appt.

    I brought up the subject of pain control, which seems to be a sticky subject, for some reason. Before my hardware removal surgery, I hadn't been taking anything for pain since the early weeks post-fusion surgery. Since early Nov, I have been getting pain meds (oxycontin and oxycodone) and Flexaril from our local sports medicine M.D., who has taken on my pain management far longer than he normally does, as a personal favor. He does, however, want to hand over that responsibility, and brought up the idea of a pain clinic, and suggested that I have my surgeon give me a referral to the pain clinic that's affiliated w/the university medical center (where my surgeon is). I brought that up today, and he wasn't too keen about it. Also, he said he isn't a fan of oxycontin, so gave me prescriptions for a month of Flexaril and only 50 oxycodone. I say "only" because I am in such severe pain that it takes 3 of them to make life bearable (I need more like 6 to actually be pain-free). . .so 50 tabs won't last long. Every few days, I try to do without the narcs (just Advil), to see if I have withdrawal symptoms. So far, I don't (maybe I'm not giving it enough time for withdrawal weirdness to show up?) . . .I just have excruciating pain. I can only hope that THIS pain will be taken care of by the revision surgery. If not, I don't know what I'll do. . .but I'll try not to think about that now.

    So far, it's been an interesting 17 months journey.
    Last edited by mgs; 01-31-2011 at 07:29 PM.

  15. #15
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    Oh, I am SOOOO glad you got in due to the cancellation. I hated the idea of you having to wait so long for something that was obviously going downhill, and fast. Yes, you are a unique case, and should be treated uniquely!!!
    I hope he has an answer for you, and if he doesn't have a definitive answer, will refer you to someone who might have a better idea, or at least collaborate with someone. You are sure overdue for some good luck, and I hope and choose to think it will be coming your way after this surgery is over. You are in my thoughts!!!! You are one tough lady.... and your attitude will carry you through this. If it helps, you have a personal cheering squad out here!!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

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