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Thread: Discombobulated - Indestructible as ever

  1. #31
    Join Date
    Sep 2008
    Posts
    336
    Glad to hear you're home!

    Keep us posted when you can!

    Marian

  2. #32
    Join Date
    Mar 2007
    Posts
    213
    Hey everyone -

    Well, I haven't been online too much, but thought I'd drop in with a quick update again, in case anyone's interested.

    I'm still scaling back my painkillers because I have very little pain, & since a little before 3wks post-op have been on less than pre-op!! It's still early days, but after years of increasing painkillers (largely upping codeine, since I didn't want anything too hardcore) - I finally feel like I'm reclaiming my brain. My concentration, although still somewhat dodgy from the anaesthetic, fatigue, painkillers, etc. is finally improving - along with things like my short-term & long-term memory. My head feels clearer...& I've even gotten half-way through reading a book after only a couple of days of reading - for up to an hour at a time! [I've always been a reader, but have found this increasingly difficult over the last couple of years - remembering events, characters, what I've just read, & just concentrating on the task for more than 10 mins or so. Was making study very difficult!]

    In the days after stopping the Tramadol [a couple of days after stopping the Digesic] & after using the hydrocortisone cream just a few times, the hand itching eased & has long gone - Hurrah!! The night before last marked the first post-op time when I didn't wake up for Panadeine &/or Valium in the night, & I've also scaled them both down big-time during the day, esp. as the nerve pains have dropped a lot. Pre-op, I'd never have believed that a single Panadeine Extra (15mg codeine phosphate) would touch pain, but it's all I've been needing, 1-3 times during waking hours. Plus, I've scaled back to 1/2 Valium pill, 1-2 times during the day. I'm still laying down for maybe 1/2-1 hr to stretch out once or twice a day, but rarely taking naps. This is just....nuts, & entirely unexpected just 3.5wks post-op.

    Once our gorgeous rain clears up, I'm even planning a bit of an outing this week, only up to our small shopping centre - but it will be nice to be out of the house. And, between the sensation not returning much [yet?] in my previously-hypersensitive leg, the new & improved spine not squishing nerves, & a little Valium if needed - I'm really hoping this will be my first outing in a very long time when bumpy terrain (think decorative, closely-placed paving tiles, esp.) won't continually trigger what I can now identify as the nerve pains that have always been with me. Even though I always suspected nerve involvement in the cramping & shooting pains that I get from such things & just randomly, the post-op nerve pains taught me that they were simply more intense versions of what I'd had my whole life. Who knew there was something I could take to help these?! I will definitely be talking to my surgeon about some kind of low dose med to help me out on a permanent basis with these - something else very positive from this surgery, for me.

    The de-rotation & straightening has done so much for pain levels, breathing, & other medical issues. I can't believe how well the surgery went & how speedy/smooth recovery seems to be for me this time around.....it all seems "too good to be true", & I'm still just waiting for something to go seriously wrong. Yes, I know that probably sounds morbid/pessimistic/whatever, but...I really don't know that I'll be able to properly relax about this "success" for a good year or two (at which point I could well tell that the previous fusion was becoming a miserable failure).

    Sooo....that's me at the moment. Have been thinking much of everyone here, most especially those who are up for surgery soon - so, so hope things go well for everyone. I really hope 2009 brings much improved quality of life for everyone here, whether by surgery, better pain management, or whatever else...

    Wishing you all Peace & Joy in the new year & beyond. Take care, all.
    Last edited by discombobulated; 01-04-2009 at 06:12 PM.

  3. #33
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    We all love a good news story!

    Your many rapid improvements are wonderful to hear about and give all of us on *this* side of surgery, much hope. I hope your remarkable recovery continues full speed and many more improvements are in store for you yet!
    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

  4. #34
    Join Date
    Mar 2007
    Posts
    213
    Well, seeing as I just linked to here for a couple of people facing similar surgeries, I figure I'd better also update while I'm at it....

    I'm still on only a low dose of Panadeine Extra as needed (about 0-4 each 24hrs), but have re-started the Valium more regularly (1/4 5mg pill every 6hrs during day, 1 pill before bed, 1/2 pill when I wake in the wee hours). The valium's not so much for the nerve pains, which are still *reasonably* settled, but to keep my neck muscles relaxed. I've always had problems in the mornings with what I now know to call "cervicogenic headaches" [CVHs], but since sleeping with my spiffy new spine, the headaches have acquired a "with migraine features". Obviously, I'm looking into options to keep these at bay WITHOUT living on Valium...but at least I'm sleeping again! Since I don't usually have CVH problems while in hosp using their "dynamic pressure redistribution mattress overlay"s, & because I'm also having (ongoing) troubles with pressure sores, I'm looking good to receive govt funding to get one of these for my own bed. I'm trialing one right now that's not quite right, but I at least have hope with this.

    I had transitioned off my nutritional supplements & thought I was holding my own....but today am back on with the Sustagen with Zymil (lactose-free milk) because I'm just not feeling up to eating much at all, & my body absorbs even less. Nevermind! I will get there, eventually! Whether the upped Valium, doing more in general, less nutrition, just "everything" catching up with me - or a combination of any/all - I've found that even though I'm 5wks post-op tomorrow (already - yet it seems so long ago, too!!), the exhaustion has really taken over in the last few days. Back to napping for at least an hour once or sometimes twice a day, & the concentration's shot again....but, all these things that will come good over time!

    I'm just still hanging out for my 8wk post-op check so my surgeon can knock out my worry that the curve/rotation is returning (still intense, entirely illogical & unsupported by the evidence of the even shoulders, ribcage, etc.!) *it's all in my head*it's all in my head*it's all in my head*

    On a positive side - I had my first post-op outing today, to our local small shopping centre! AND I SURVIVED!! Mind you, I was out for about 2hrs & came home & promptly crashed for 3hrs! - woken only because of scorching heat, or I'd probably still be sleeping, lol.... speaking of which, I can have more meds now, so am heading back to bed!

    Goodnight (or day!), all. Take care

  5. #35
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Dear Dis-- thanks for the update. It does sound like "in the big picture" you are doing really well, so that is wonderful. I was sorry to hear about your CVHs. I self-diagnosed myself with those last year, after never being able to give mine a label and then finding all the signs and symptoms I experience listed together under that heading... and they can be sooooo debilitating. OTCs just don't do a thing, but I've found if I take a Darvocet that it makes the headache more livable. I usually get one during the night, waking up with it and it stays with me all day, getting worse and worse-- and it usually lasts for at least a few days. My family doctor had me give up caffeine because he thought that might help, and I dutifully did for 4.5 months with no change. Over the holidays I decided that was silly since there was no difference, so am back to having a cup or two of joe in the mornings again.

    It's so interesting to read about your weight problem, as it's the exact opposite of mine. Well, not quite the opposite as my appetite isn't big nor is the amount of food I eat, but I gain anyway. I am still working at dieting. I hope you are able to maintain and not lose any more. Wish I could trade off a little with you in the metabolism area.

    That's great about your outing! There are so many important "firsts" in recovery-- and meeting those milestones is cause for big celebrations! I had to laugh about the scorching heat waking you up, as we are in the grips of severely frigid temps in the midwest and eastern parts of the US. I am home from school today as it was canceled due to windchills-- our real temp is -13º and with the windchill factored in it feels like -30º. Brrrrr!

    Keep up the good work with your recovery and thanks for letting us know. I think it buoys us all up to hear news of how others are doing. You've had a rough road, but it looks like it's getting pretty smooth now. BTW-- I know I always get the jitters when I'm heading back to my surgeon for a check-up-- thinking something is probably wrong because of aches or pains... but as you keep saying to yourself: "it's all in my head..." And hopefully yours will stay there and eventually disappear entirely. Hugs, Susie
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  6. #36
    Join Date
    Aug 2005
    Location
    Nebraska
    Posts
    44
    Sorry I haven't been keeping up with the board!!

    I am sooooooooooo happy things are going well for you!!!

    What is this business with it being illegal to give patients their metal!?!?!

    My first outing was to a hockey game, it ended up being way more brutal than I had anticipated. I think it was just so overwhelming to be around SO many people. And at that point I was walking so slowly and everyone want to push on by me ugh
    26 year old female
    wore a brace in junior high
    fusion of T4-L4 at 15 years old
    broken hardware at 23 due to failed fusion
    November 10, 2008 hardware removal and fusion of L3-L4

  7. #37
    Join Date
    Mar 2007
    Posts
    213
    Jen, it's nice to see you around again - & I love that you come bearing double good news!

    The crowds were something I was really worried about since it's tourist season (*sigh*...if you can shoot at random animals during hunting season, why can't I shoot the excess people during tourist season here?! ). But it seems the economic downturn or whatever else worked in my favour & there weren't too many people around. *phew*. Glad you survived your hockey experience in one piece ;-)

    --

    Susie,

    Google tells me that your Darvocet is in fact more or less my Digesic - I, too, found it a great painkiller (it was in the combo of the orals I went on to straight off the epi)...unfortunately, also was the one that after a couple of wks of doses made me quite on the way to being unable to breathe! Sure glad it helps you out without any nasty side-effects.

    CGHs are just horrible to live with day in & day out. Mine are just as you say, too - start in the night (I just can't seem to find a position to sleep in that my neck likes), & if I don't get on to it straight away, it gets worse through the day, worse again that night, & so on & so forth...until migraine features decide to climb aboard as well. UGH. I'm so glad you've found that Darvocet helps you some...The only other things I can suggest are what's working out for me (perhaps things you already know??).

    A) A low-dose, regular muscle relaxant (for me, diazepam/Valium) at the moment to keep my neck muscles relaxed so not squishing nerves or whatever happens. Obviously, this isn't a long-term solution, but it sure is helping until I sort something more sustainable out. I take a higher dose before I go to bed & during the night since it's the sleeping position that triggers the CGHs for me. But if I feel one starting any other time, I take either 1/2 or even a whole 5mg Valium & it helps me more than painkiller ever has. I don't know if you could have something similar on hand to knock them out now & again when they get too bad???

    B) Find a great PT! My guy was the one who diagnosed them, & there is a point on each side, somewhere between the junction of neck muscle & skull - the first time he pressed one of these was the morning of my first CGH "with migraine features" & swear to goodness, I was convinced for about 45-60secs that my head was going to explode. All I could think was, "**** I'm glad I took that ondansetron [strong anti-emetic] before I came (to quit me dry-retching), + 2 Panadeine Extra + 1 Valium, or his office would be newly carpeted & wallpapered in vomited bile" . BUT then, my neck & head just magically started easing, & I swear, nothing has EVER helped a full-on headache like that So much, So quickly. Like any great physio, he taught me & my Mum who was there his "trick", & now we're able to replicate it at home a couple of times a day so that things don't get too bad. It is possible, just harder, to do it for yourself. I'll try to find a pic of where to press & post it for you if you like - but honestly, if you can get yourself to a good PT, it has been so incredibly worth it for me & I hope it would work equally for you.


    BTW - I'm with you on caffeine definitely not being the cause. I can't have it, at all (except in low doses of tea) - besides shaking, nausea, dehydration, etc., coffee does give me headaches, but they don't feel like CGHs. Enjoy that "joe"! [& have one for me too, please!]


    Pleeeeease send me some wind chill or coolness in any form!! Our weather's been strangely cycling between wet & windy & absurdly hot & humid - up to 38C for a few days last wk (?)!! About 34C that woke me up yesterday. As for the metabolism - I'd be thrilled to do a bit of a swap Actually, my problem is less fast metabolism (though it probably is fast) than chronic (read: lifelong) malabsorption. I'm perpetually working on it, but every time I have surgery or get sick, the weight falls off & signs of malnutrition start showing up. SO FRUSTRATING! LOL! But, with my supplements, my body's doing well enough to be healing nicely - scar's flattening out & all!

    - Which is yet another argument going for the "it's all in my head" argument...but I'm still struggling to wait another 3 wks to find out for sure. It's less jitters about seeing the doc (heck, I'd see him today if I could!) - just knowing that this is the area that refused to stay stuck last time. ALL the signs are good....but I can't help but think, "Am I sure that ribcage side was still a tiny bit bigger right after surgery?? Am I sure I'm just sitting/lying a little different, & that's why my back feels different??" ETC.! 3 weeks just feels like a long time, no matter how many good signs there are, lol

    One last thing to ramble about - another first, in fact! I know "walk, walk, walk" is the mantra for most post-op peoples, but I've had to balance that with not burning too many calories, & also not stressing the new fusion with tackling bumpy terrain in my wheelchair. So - lots of pushing myself around in the house, but not much outdoors. Yesterday afternoon - first walk on part of the old route that I (& sometimes my Mum) used to go on around the neighbourhood. The paving & roads aren't spectacular, but felt ok. I couldn't push the whole way, but certainly more than I've done in a while (except maybe in the shopping centre the day before!). Felt strange, but GOOD Depending on the weather (I get dehydrated in high heat/humidity), we'll go as often as we can, & I'll build up with the pushing further. But yes, another first - YAY!

    --

    Oooh and...on an entirely unrelated note....

    This weekend (my time), I'm hanging out as long as I can on my computer, hoping to hear news of the birth of a kitten I'm to adopt (provided a baby girl is born in the litter!!). My awesome old girl died in Feb 2008 after 17 yrs with me (since I was 4) & after waiting for me to get well after the refractory septic shock episode....I swore black & blue that I could never go through losing another baby or feel like I'm replacing my girl....but it's time to adopt a new fur-friend I wanted to adopt from a refuge, but got because it's hard to predict personality & I'm only up to caring for a fairly docile but intelligent kitty, I started looking around......and, all going to plan I'm adopting a blue mitted ragdoll baby girl in about 14 wks - kittens expected to be born over the weekend! I'm exceedingly excited (if feeling just a little guilty), & just had to share

    --

    Susie, hope you can sort those horrid CGHs!

    Be well, all.
    Last edited by discombobulated; 01-16-2009 at 05:19 PM. Reason: Wow....no idea how this got so long, but heading back to bed - too Valium-sleepy to edit. Terribly sorry!!

  8. #38
    Join Date
    Apr 2008
    Location
    Georgia
    Posts
    40
    Hi Michelle,

    Although I've read your posts and kept up with your progress, I haven't actually written to you before. But I had to respond when I read about how you're planning to get a new kitten, after losing your 17-year-old cat.

    I lost my 16-year-old cat, Nipper, over a year ago, and like you, this has been the first time since my childhood that I've not had a kitty. I've had to put off getting another cat until after I'm healed from surgery (which is in 3 days) so I can look after him properly. I donate to a local cat shelter, but dare not look at any of the "adoptables" while I'm there, in the likely event that one (or more) would end up being taken home with me.

    Anyway, I'm so happy for you that you'll soon have a new "baby"! How exciting it must be to be waiting to hear of her birth! Keep us posted. Maybe I can live vicariously through your experience.

    Peachy

  9. #39
    Join Date
    Mar 2007
    Posts
    213
    Peachy,

    I'm sorry you lost Nipper...but at least it sounds like he & my Minnie both lived to ripe old ages in happy, loving homes Do let me know when you adopt a new fur-friend (or should I say, the entire refuge of fur-friends? ).

    I don't have my first follow-up appt with my surgeon until 16th Feb., & yes...clearance is the question that lurks in my mind, too. I'm thrilled you'll be cleared in just 3 days! My incision is long healed & is flattening out, but I'm more worried he'll say, "A cat that could grow to 7kg+? I'll never clear you to pick that lump up!" lol

    I'll let you know when I hear about the birth & any pics I get - feel free to live vicariously for as long as you like! Heck, I will be too, through photos only, until she's at least 5-6 wks old. Feels like eternity! And 14wks till she's living with me....what exactly comes after eternity?!!

    I'll keep ya posted Take care.

  10. #40
    Join Date
    Jun 2008
    Posts
    237
    Like Peachy, i had to respond when reading about the loss of Minnie and the soon to be new cat in the house. I lost my boy PeeWee in 2/2002 at 11 yrs.old because of various illnesses and never thought he could be replaced. Lo and behold I found a wonderful rescue snowshoe cat who has been the delight of my life since getting him in June 2002. What an absolute love and delight as I am sure that your new little Ragdoll will be. I am soon to be having my spine straightened but talk of cats always cheers me up.
    Congrats to you.
    avis

  11. #41
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Dis-- thanks so much for the encouragement and help with the CGH stuff. I haven't had one for a couple of weeks, so I'm feeling pretty good! Darvocet is what they weaned me down to (and later off of) at about 5 months post-op, after taking hydrocodone for about 5 months, but I have them "on hand" in case I have a bad day-- and it's mild enough I don't feel bad taking it for the headaches, plus I cleared that with my family doctor and he said that was fine. Sorry it gives you problems! If they get worse I may ask about the valium. That is another med I weaned off of entirely, post-op. As for the PT-- it's a 45 minute drive for me to go to one, so that would be a last resort since I work. But I'll keep that in mind too, in case they get worse.

    I'm excited for you and your new Kitty. I am so sorry for you (and Peachy too) with the losses of a beloved pet that was true family after so many years with you. Grief for a pet can be soooo intense. Anyway, it's good that you will soon have a new kitty to love and cuddle. And you too, Peachy, when you are cleared.

    I'm so proud of you for making advances with your walking! Yay! And yes, I understand only too well the result of added walking also can bring weight loss, whether desired (me) or not (you). Maybe you can treat yourself to a nice thick milkshake after your walking to counter the calorie loss. Keep up the good work!

    Your appointment will be here soon and he'll probably tell you that all is well and you are healing right on target. Try not to worry too much about it, as worry never helps-- only hinders. Easy to say, hard to do, I know! Every time one of my check-ups is almost here, I tend to think of the aches and pains and wonder if all is ok or not. My next appt. is Feb. 12th, so just around the corner... I'll be at 21 months post-op and am wondering if I'll ever get totally over the surgery or not. But really, I think I am doing fine and that I'll just have aches and pains-- but they are better aches and pains than before. You want to pick up your kitty when it's bigger-- and I want to pick up my grandbabies that will be born in May. I think when there's a will, there's a way. We can always have them deposited (or jump up to) our laps!
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  12. #42
    Join Date
    Apr 2008
    Location
    Georgia
    Posts
    40
    Michelle,

    Sorry, but my post about when I could get a new kitty was unclear (kind of like my head ). What I meant was, not my clearance, but my surgery is 3 days away....actually now only 2. Eek!

    I suppose it will be a life adjustment for us, learning to pick up a kitty, fix food & water bowls, clean litter box, etc. without hurting ourselves. Let me know what you learn, so I can follow, hopefully next summer.

    Peachy

  13. #43
    Join Date
    Mar 2007
    Posts
    213
    Oh, Peachy - I'm sorry! Call it a "valium-moment" I did indeed know you were heading for surgery very soon. Well, I'll just have to post lots of kitten pics for you to live vicariously through over the coming months, tide you over until you get a four-legged friend of your own Furry hugs are always healing (even if they are cyber-hugs).

    I'm afraid any of my "lessons" learned probably won't be too useful to you, since I use a wheelchair. But - I'm sure there will be plenty of others with tips for you.

    Best wishes for your surgery. I'll be thinking much of you.

    --

    Avis - I'm sorry that you, too, lost your longtime fur-friend...but how wonderful that another can live well-loved with you. Best wishes for your upcoming surgery! And yes, kitty talk always cheers me up, too But, alas, no more news of my kitten's birth yet!

    --

    Susie...thank-you, as always, for your support & calming words.

    I'm sorry you don't have easy access to a PT, but I'm so glad the meds are working for when you need them. While waiting impatiently near my inbox all day, I've been scouting on a whole hoard of subjects, among which are CGHs...I found a couple of websites esp. interesting & one graphic that showed exactly where my PT was pressing, if you ever want it

    I really do wish we could swap weight probs a little! lol! Milkshakes are hard for me, but I've been relying on a lot of Sustagen again the today & yesterday esp., & just trying to survive our heat/humidity without getting dehydrated / electrolyte imbalances. So, no more walks. But maybe a short outing tomorrow to get some new plants for my fish tank.

    You're so right that worrying about the fusion hindering rather than helping - I'm doing all I can for it, so it really is out of my control...still, easier said than done! Best of luck for your next check-up. And yes...where there's a will, there's a way. We will both find ways to hug our babies (now, if only they'd be polite & be born already! LOL).

    --

    Best wishes to you all - for surgery & check-ups. And thank-you for the support. Take care.

  14. #44
    Join Date
    Mar 2007
    Posts
    213
    Well, for anyone interested, I received yesterday the invoice for the full list of procedures done [it fascinated me for ages ]

    1. Spinal fusion for scoliosis, combined with segmental instrumentation (C D, Kielke or [sentence ended there. I presume they used the C D since it sure wasn't anterior]

    2. Laminectomy involving more than one vertebral interspace for spinal stenosis

    3. Spinal rhizolysis involving exposure of spinal nerve roots - for lateral recess, exit foraminal.


    I sound like a spinal surgery textbook, LOL! No wonder there were 5 junior surgeons who came to watch

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