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View Full Version : a little cheese to go with my whine??



mgs
01-14-2011, 07:39 PM
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.

pilar
01-14-2011, 07:54 PM
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?

LindaRacine
01-14-2011, 10:02 PM
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

mgs
01-15-2011, 07:27 AM
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. :)

JenniferG
01-15-2011, 03:09 PM
I like your style mgs. You have guts!

Lilysaidwhat
01-15-2011, 04:32 PM
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))

Lue
01-15-2011, 05:41 PM
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

Confusedmom
01-15-2011, 08:34 PM
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

mgs
01-17-2011, 02:20 PM
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! :D )

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

Lilysaidwhat
01-19-2011, 06:17 PM
Hey kid,

How are you doing? I hope today was a little better.

mgs
01-20-2011, 01:24 PM
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.

jeneemohler
01-20-2011, 08:05 PM
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.

JenniferG
01-20-2011, 10:20 PM
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!

mgs
01-31-2011, 05:43 PM
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.

jeneemohler
01-31-2011, 07:03 PM
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!!

JenniferG
02-01-2011, 04:05 AM
Roll on the ct. Let's get this show on the road!

mgs
02-01-2011, 12:49 PM
A "personal cheering squad" helps more than words can convey!! I appreciate every single kind thought and good wish that anyone here takes the time to type.
I'm taking it easy today, avoiding the promised blizzard (I live less than 100 mi north of Chicago, on the IL/WI border), and trying to wrap my brain around what I saw on yesterday's x-ray: my thoracic curve looks pretty much back to its 86*, pre-fusion surgery, and I guess the lumbar is about as bad as it was, too. I have to wonder why I didn't fuse? I followed instructions to a "T". Also, I'm gearing up mentally for the fact that I get to go through it all again, as soon as I can get on the OR schedule.
Now, personally. . .if I were to be "unique" (as the dr said yesterday). . .I'd prefer to be unique in a different way. . .like in. . ."she won the lottery three times in a row". . .or "she just woke up one morning with a body like a SI swimsuit model". . .something like that.

Doodles
02-01-2011, 01:18 PM
mgs--
I agree! I like those unique options. Glad to see you still have a great sense of humor. I hope things can get straightened out for you--literally! Janet

jeneemohler
02-01-2011, 02:49 PM
Glad the ball is finally rolling. Keep us posted!

sarahcant
02-02-2011, 09:44 AM
I read your story last night and could not stop thinking about the two women your husband heard of that ended up crippled....can you give details? Im hoping that they had their surgeries a long time ago before advances were made. That is what scares me the most about all of this. Thanks. Hope you are feeling ok today.

Sarahcant
T 38
L 70
waiting for surgery March15
Dr. Erricco NYU

jrnyc
02-02-2011, 10:10 AM
hi mgs
i think i misunderstood your earlier post...it sounds as if you have sufficient pain meds from your doctors for now...at least, to help with the pain til surgery can be scheduled...
i am so sorry you are going through all this...just another example of how unfair life can be, especially when you say you did everything the right way!

i have not had surgery..yet...but i can sympathize with being in constant pain..
i take 30 mg oxycontin on "bad"days...and the cold and damp of this winter is not helping anyone in any kind of pain!
i take hydrocodone...10 mg, usually 2 at a time, for "regular" pain...
but it is my experience that often pain meds, for me, just take the edge off, so i can stop grinding my teeth!

i hope you get to see your doctor soon...
maybe someone will cancel an appointment...and hope that you can have the needed surgery quicker than expected...

jess

mgs
02-02-2011, 12:50 PM
I hope that everyone is safe and sound. The blizzard has put life at a standstill here, so my husband and son are home for the day.
I do have pain meds still, but I know that once I am out of them, that's it, until whenever I have surgery.. . .so, I am trying to ration them. Yesterday, I held on till 4pm, taking only Advil throughout the day, so I was at about an "8" (1-10 pain scale) all day - all I could do was sit still or lay down - I was in too much pain to consider eating. I finally took something so that I could make BLTs for dinner and load the dishwasher.
Even though my surgeon was not interested in discussing a pain clinic option, I still think it might be a good option (my local sports medicine dr, who has been providing me with the prescriptions for pain meds, is the one who suggested it to me). I am considering making an appt w/my internist, for a referral to a pain clinic. Opinions????

The 2 women who had bad experiences (earlier post) had their surgeries at least 10 years ago - I remember that 1 had hers at Rush, and the other, I don't recall. They weren't "cripples" but "back cripples" (sorry for any confusion) - meaning that their pain prohibited them from living a normal life. Sadly, the woman who considered suicide got breast cancer and died not long after her diagnosis. My husband also has in his practice (derm) a woman who had her surgery about 3 years ago (we have the same surgeon) and she's doing great. We have to remember that the large majority of us are very happy with the result, and would do it again.

JamieAnn
02-02-2011, 12:51 PM
Mgs,

I'm so sorry to hear that you're dealing with all of this. After even having 1 of these surgeries, I cannot even imagine what you're going through.

I am very curious and confused though about one thing.. how does the surgeon not know the fusion happened once he is "in there" the 2nd time? Isn't it clear at that point that the bone fused or didn't fuse? What am I missing here?

I'm so unclear about how they can tell if the fusion was successful.

Will you consider a second opinion?

Best of luck and we are all here for you!

jrnyc
02-02-2011, 01:06 PM
then i was correct about your doctor not ...understanding...about pain in folks who just need relief, plain and simple!

i am so sorry you have to worry about rationing your medication...
i am grateful that i have a pain doc in Manhattan who provides the pills i need...
i wish you could come here to see him, but i realize you live too far away...

i am wondering if anyone who lives in your area from forum knows of a good pain doc out there...?

jess

mgs
02-02-2011, 04:36 PM
JamieAnn, before I had the 2nd surgery (hardware removal), the surgeon explained that he would not be able to tell during that surgery if there is fusion because the hardware leaves marks on the vertebrae, so he wouldn't be able to tell (with certainty) what he was looking at. His plan, at that point, was to wait 6 months and then do a CT. The 6 mos wait was to allow all the scratches and dings from the hardware to become history, then he would be able to tell if there was an area(s) of non-union, and exactly where it was. . .If I was fused, T-3 to L-3 would look as smoothe as a sheet of ice.
The CT is being done earlier than he had hoped because I am, very clearly, re-curving FAST.

From this forum, I was aware over a year ago that other patients of his were unhappy with how his office handles pain control (they pretty much don't want to), so at least I know to not take it personally.

Off to bed!! I took an oxycontin and an oxycodone this morning, since my husband's home because of the blizzard day. . .I wanted to have somewhat of a nice day with him. We watched "Groundhog Day". . .our Feb 2 tradition. But, the meds are wearing off, so my day is ending.

Lilysaidwhat
02-02-2011, 05:03 PM
I watched Groundhog Day too! "Phil? Phil! It's me, Ned Ryerson! I dated your sister until you told me not to..." Love it!

I'm sorry you're rationing pain meds - I would call my GP and get a referral to a Pain clinic and/or a PM&R. You shouldn't have to deal with rationing on top of everything else - it's just insult to injury.

Thank you for saying we have to focus on the best outcomes. I think that probably 95% of people with this surgery come out of it for the better and do what I want to do - put it in the past and move forward like it never happened. I try to remember that many people have done that, and that's why I'm not reading success story after success story - people who feel great don't need support!

Ti Ed, you take the cake for being most awesome at recovery as well as cheering people on. Several years ago my friends did the AIDS bike ride. There was one guy dressed up like a chicken (I'm not kidding!) who would ride up and down the same hill with each group, cheering them all on, even and especially the stragglers - he would ride with everyone and then continue on, get back up front, then hang back again until everyone had made it. You're one of those inspirational people. Thanks for that.

fierceliketiger
02-04-2011, 02:42 AM
Oh wow, I am so sorry that you are having to go through this. I can't help but empathize with you on so many points. I hate it that you are having to ration your pain medication, sadly I have been there as well, and it is a heck of a state to be in. I really hope that something gets done for you, and quickly to help you get back on the road to recovery.