Discombobulated - Indestructible as ever

[JenniferG]

That's what I'm hoping, JoAnn. The minute I hear anything, I'll be sure to post it.

Jen

[JenniferG]

I couldn't wait any longer and phoned the hospital today. (It was a week yesterday since Michelle's surgery.) I was amazed to be put through to Michelle's phone. She was all "valiumed up" but said things are going better than expected and she hopes to leave the hospital on Monday. She also said that "the drugs have been fantastic this time around!"

So that's all good news. I will relax now and not bother her again but it sounds like she might be back online in the near future.

[txmarinemom]

Ahhhh ... thank god the bio-model seems to have worked for my shunt sister ;-). Please pass along my regards, Jen.

Pam

[debbei]

Jen,

That's wonderful news! Thanks for the update.

[pmsmom]

Yes indeed! Thanks for the update.

Please tell her we continue to think about her!

Marian

[discombobulated]

Hi everyone,

Sorry my bro didn't keep you Jen up to date as much as I'd hoped! The good wishes have meant so much to me, so thank-you, all

It's late here & I'm just waiting for some meds to kick in before I go to bed but wanted to drop you a line.....pathetically, it's actually going to be something of a copy/paste of my email to Jen earlier when I was feeling a little more awake, lol. No doubt I've left lots out but anyhow.....

----

Got discharged this morning. Too hard to get accessible hotel so staying with my brother (in Brisbane) at least till after Christmas & have stolen his laptop/internet. I'm doing REALLY GOOD (shock! horror!). Had a couple of not-great days in hosp., but overall it's been SO MUCH EASIER than previous spinal surgeries. Heck, easier than some other, non-spine surgeries, lol.

I'm on extended release tramadol (150mg), digesics, & valium (5mg), but when just lying or sitting, honestly haven't had hardly any back pain SINCE SURGERY!! (WHAT?????) And definitely less than pre-op! Epidural worked for the first time ever, then oral painkillers are also working well this time - Dr. Askin puts epidurals in differently to everyone else apparently & places them while he's still got the incision open so he can place it more accurately. Also uses different drugs to what my public hospital usually supplies.

My only trouble has been very bad nerve pains / cramping down upper legs because of swelling around sacral nerves + inflammation. Took a good (BAD) few days/nights to get meds right to fix that, but the upped valium/digesics combo is taking care of it now & I think swelling etc. is going down because I'm needing the drugs at longer intervals. Nerve pain because is because Dr. Askin did 2 osteotomies (a wedge out of each of 2 vertebra), & to do that, he stripped back everything right down to the spinal cord, which makes for very angry nerves! Also leg muscles not happy because they were stripped away from pelvis, etc. to get better access + bone pain because the pelvic screws (one either side) are 7.5cm (3inch) long!! He thinks he screwed into really good, strong bone this time, though. YAY! But as I say, all pain being taken care of with that drug combo. Either the swelling/inflammation or nerve damage (permanent or temporary) has me with very reduced sensation in upper legs, but it does seem to be slowly coming back & movement isn't compromised - so even if permanent, it's a small price.

No post-op x-rays until appointment in 8 wks, but feel much straighter & untwisted - trouble with balance & muscles (shoulder, neck, legs, etc.) wanting to return to old twisted positions, but that will come good. Don't think I gained height even though I'm straighter, probably because of the osteotomies. But - height was hardly the aim!

Able to move around surprisingly well & transfer to & from wheelchair by myself fairly well. Surprisingly, had no lung function tests, but the portable spirometer reading pre-op showed that my deepest breath was about 1500mL - even just a few days post-op, it was up to 2250mL!! Incision slightly longer than I expected, since lower rods connected to thoracic ones down at like...L3, I think - incision goes from about mid-way down shoulder blades right down. Healing very nicely - all dressings off, & able to have showers, etc.. Major risk of infection over, but still on some antibiotics just in case.

There were a few hiccups with a couple of nurses & doctors but most were, as always, spectacular.

I have to confess, I've written this in two parts because the valium kicked in LOL. It's definitely rambly, sorry - but hope it's reasonably coherent!


--

Well, I'm off to take some more valium & such & get a good night's sleep. Just wanted to pop in & thank you all for such magnificent support - & to the lovelies who PMd me, I'll get back to you soon, I promise

[And just for the record, it was Great to hear from Jen, not at all the bother she seems to think she was! Although, I wasn't sure I was too coherent, lol!]

Looking forward to catching up on all your news bit by bit - for any upcoming surgeries, GOODLUCK!! And smooth recovery to everyone else newly on "this side"

Goodnight.


EDIT - my goodness, SO sorry this got so long!!! Congrats to any who made it through the whole post

[debbei]

Good for you Michelle,

I'm so glad that you are doing great, even better than you expected. It's wonderful that you are able to recover at your brother's for a while. Get all the rest you can, you need it!

Have a wonderful Christmas,

[JenniferG]

i'm very happy for you Michelle, for doing so well. You sure deserve it!

[discombobulated]

Hey again everyone,

Just for anyone's general curiosity, I thought I'd post up a few more of the "details" side of things...


My surgeon was absolutely magnificent - even listened to me when I asked for the central line to be left in for extra days (because otherwise they'd have had no blood or IV access). Also refused to take his usual mid-long-surgery short break because he wanted me out of anaesthetic ASAP.

Blood loss was the biggest concern & was a prob. During surgery, I had cell saver + 2 (? at least 1) units of donor blood during surgery because platelets don't survive the cell saver process & needed better clotting. Another donor transfusion (whole blood) that night in ICU & another the night after (still ICU) because HbG was dropping badly. Apparently I so pale I was blending into the pillow

As is very common with spinal surgeries, electrolytes went way out (I'm very prone to this anyway), but were fixed reasonably well by the time I was out of ICU (3 days). Of course, was on the "Gatorade diet" for the first couple of days to help fix this anyway (Ugh, hate that stuff! lol). But besides that, none of the Big Scary Possible Complications! YAY!! Still on prophylactic antibiotics, but incision is completely healed over, apparently, so infection risk is lower now.

Dr. Askin said a couple of times that he couldn't have done the surgery without having the biomodel beforehand (& in surgery?) + all the squillions of scans I'd had. I am Very Grateful.

Was meant to be on ventilator for 48hrs but with minimal consciousness after first night...well, somebody gave me either the wrong anti-emetic (I only respond to one) or didn't think to give me one at all, so in my first moments of "minimal consciousness" (which I'm not meant to even remember but sure do), I vomited non-stop until they were able to pull the vent out + give me the right anti-emetic. Yeah, that was one of the lower points lol. Then NG tube until that night to make sure vomiting wouldn't start again. But, mostly upwards from there.

Nutrition has been a major problem, esp. since many of the drugs I were/am on are appetite suppressants. Still on Sustagen & Polyjoule, but (as you'll see in a second), without the Tramadol, I've even had a tiny appetite come back just in time for Christmas today! I'll get there....eventually ;-)

Last night I fell asleep before taking the Tramadol ER & felt no difference, so skipped it again this morning & have concluded that I have no need for it. Also haven't had digesics or valium since 1am & now it's 4:15pm (2 wks post-op today)! I can't believe what a difference this is to the months of agony from my previous 2 spinals.......I actually feel rather guilty posting such positive results when I know that many of you guys & gals have been through the horrid post-op path, but I do hope that this can give a little hope to some pre-op people that it isn't always the surgery from hell.....*but still with the guilt*



I'm slowly catching up on news around here - even without drugs today, I've been having to take a couple of hour nap morning & afternoon, & going to bed very early.

So again, goodluck to anyone who's fast approaching surgery & best wishes for a smooth recovery to all newly recovering chaps (Especially you, Diane!!!). And if I can be of use to anybody, for anything please ask away or PM me. I hope I can stay useful around here ;-) (And, as always, SORRY FOR THE RAMBLING!!

Take care all, & happy Holidays.


BTW - after all the sticky notes I wrote to myself & writing it on my hands - I STILL forgot to ask my surgeon to keep my metal bits!! Apparently it's actually illegal to give them to patients, but.......

[trulyaries]

Merry Christmas

Hi Michelle -
On this Christmas day I'm crying happy tears for you!!

[txmarinemom]

Michelle, I'll echo FeliciaFeliciaFelicia

Reading your bio-model was effective is better than any gift I received (no matter HOW well thought out ... and my daughter is pretty creative!) .

It's about damn time you got a break, honey. Fingers crossed this is one less thing in your list of worries ... for a long time!

Hugs,
Pam

[WNCmom]

Very glad to hear things went pretty smoothly and you're recovering well. Happy New Year!

[JenniferG]

And I'll echo Pam!

Michelle, a friend of mine recently had a titanium rod removed from her upper arm. It had been placed down the centre of the bone and she had two years of pain before having it removed. She asked her surgeon if she could have the rod but it wasn't mentioned again during her recovery. However, at her first post op visit, he gave her a plastic bag containing not just the rod, but the screws as well. The rod was bright blue and weighed next to nothing but seeing it and knowing where it had been was quite mind boggling. So perhaps Dr. Askin is keeping yours for you, too!

[discombobulated]

Hey,

Hope you all had a fantastic Christmas/Holiday. I had a longer update half-typed this morning at my brother's place, but had to leave it......to come HOME Yep, that's right folks - Home Sweeeeeeeet Home! I not long ago even had my first non-hospital, non-sponge-bath shower in aaaages, & it Felt So Good. Looking forward to sleeping in my own bed tonight....but not on my left side, since that hip's kindly developed a blister from my new-found (over-enthusiastic) ability to lie comfortably on that side, lol [the actual hip is a bony prominence due to previous surgeries on it + I lost some weight again...gah!]. But, my bed is still MY bed!

Honestly, I just feel like I'm waiting for something catastrophic to go wrong (at 8wk post-op?????) because even the trip home was less painful than travelling pre-op! (about 350km, took about 5hrs inc. lunch stop) Actually, except for a few big bumps & sharp turns, it was fairly....painless..... Although, my balance is still horrid - fell asleep after the drug top-up with lunch, & had to be poked awake when I started leaning waaaaay too close toward my Dad driving Anyhow, I'm a bit achy & stiff - & Exhausted - & I did take my meds when due, but didn't feel even mild desperation for them at all.

Speaking of meds - have spent much of the week tweaking them to kill off developing allergic reactions. Woohoo. As per previous post, the Tramadol Ext. Release went because it felt useless, but came back on the table when I quit the Digesics - which were making my palms itchy like nuts, & started giving me trouble breathing. Great.

As the Digesics wore out of the system, the symptoms eased, but the Valium alone wasn't managing the nerve pains so I re-started the Tramadol ER. Two doses later, & my hands were itching like (slightly smaller) nuts AGAIN.

Since it still didn't feel like it was doing much, I cut it again, & switched to Panadeine Extra (paracetamol, which is useless to me, + an codeine phosphate 15mg/tablet). Remembering this & a similar drug is what I was living on for a couple of yrs pre-op ..... blow me down if my palms weren't itching, though to a lesser extent, coinciding with the Panadeines (yep, I did rule out the Valiums by staggering doses). NO idea why opioids seem to be doing this itching thing to me right now, but at least it's rather minor compared with the digesic breathing issues (I blamed asthma, but it kept easing up whenever the digesic was wearing off badly). Soooo...end result is that today the chemist directed me toward some 1% hydrocortisone cream to help the itch - & it actually does help. Yay!

And...all that said - except for travelling today, I've been scaling back the drugs to 1-2 half doses during the day + 1-2 half or full doses during the night. Had my first ("test") outing yesterday & even survived a couple of hours of wandering around a crowded shopping centre, though I only pushed myself in w/chair for maybe 1km total (in bits & pieces). Getting there - & it was nice to be out. [Better to be home ]

Anyhow, that's my rambling for the evening. I'm actually just waiting it out until I'm due for some more meds in about an hour so I can sleep well (nerve pains go up a lot still when I lie down)....but, I won't inflict myself on you guys any longer!

Goodnight (or good-day)

And thanks again, for all the support. Pam, having this work out really has been my best Christmas gift ever - & it will only get better each year [presuming it stays stuck this time!]. But you - go enjoy your creative-kid's gifts!

Take care, all

[JenniferG]

Have a relaxing first day at home, Michelle! Do you need to pinch yourself to remind yourself that it's over, you're home and it's all going well? (Excepting the itchy palms - I always thought that meant you were coming into money!)