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View Full Version : Entry for latest announced surgery - POST-OP Update, THE GOOD NEWS!



Back-out
12-12-2016, 11:18 PM
This is the first I’ve managed to set up my laptop in typing position, hence a long delayed update. 

First, the good news. Most of all , my spine is excitingly straight! After that pre-op Xray of my kyphosis, this hardly needs saying, I guess. I’d have liked to get more than an inch back out of the five+ I lost (where ARE they?) but then again, I know how lucky I am - especially after Linda’s link today of that poor woman with the mega scoliosis that is inoperable. Also, I’m very relieved that my pain is manageable (though not from spiritual powers but a goodly dose of opiates). I had been expecting something from the Inquisition, so this is a great relief. It’s a PIB that I can’t seem to find a comfortable position for much of anything, though sleep, at least, is not much interfered with (staring at the ceiling gets OLD - am looking for a recliner on Craig’s List). What’s more, I’m able to get up alone at night for pee breaks (with nocturia that can be a dozen times!) and without feeling endangered. I’d been afraid I’d need to hire someone for that and other toileting purposes. That was first as a precaution against falling, what with the meds and all. That was not something either son and I wanted to share - likewise showering. Second toileting fear had to do with bowel issues stemming from spinal cord damage in the years I had to wait for surgery.

That problem seems to be magically remedied by the fancy Bio-Bidet I purchased with son's help - especially its . "Enema Function". I am double pleased to see they have renamed it "Vortex" instead (thus allowing me to put the remote control right on the wall). Both solutions are a huge economic relief - as great a concern as medical fears. That's all the more so after the year from hell medically/financially (leg fracture, breast cancer, sudden deafness, knee joint replacement, and dental costs even higher than all of them put together). Don’t know where I got the idea I absolutely needed someone available 24/7 - and for weeks if not months.
Being disabused of that belief and the Bio-Bidet - the answer to a prayer, I am now exhaling. I was almost put off the surgery fears related to bowel issues it promises to remedy.
Don’t know what I’ll do out of the house, but at least I have worst case scenarios covered there! WHEW!

Of course, I did have ten days in rehab to practice night-time toileting in rehab. I suppose that was worth it, even though otherwise, the facility was a disappointment apart from the cute Amish buggies trotting by. I now realize they actually put me (my spine) at risk by pushing me to do physical therapy - apart from walking, that is. Somewhere a major communication glitch occurred between Dr. Schwab’s office and them. The rehab PT head accused me of “directing my own therapy” = asking them to walk with me. This was one reason for the unexpectedly early discharge. Only two days notice was very inconvenient, but I now see it was a godsend. When I called Dr. Schwab’s office to ask them about PT (could Dr. Schwab give them a script for me?), his scheduler sounded like she almost fell out of her chair - not just shocked, but horrified. She emphasized I was in no way ready for PT, and when I was, it would only be after an OK from him - quite some time out. Assuming they’d been apprised of the recommendation to walk to tolerance (and only walk), I never thought my request to walk was out of the ordinary. Apparently, they were far from familiar with post spinal “protocol” as Dr. S’s office put it (as have my new at home carers). They have considerable respect for my 2’ incision and all that underlies it. 


I'm also grateful for being on the "other side" however many questions remain, and also for the long history of this forum's support, not the least of which is old friends reaching out. Susan Cook has been amazing ever since I wrote her some months back - to my astonishment. Once I read some more recent threads from her, I apologized for asking for any time in view of her difficulties, but she would have nothing of it - and proceeded to encourage encourage and encourage! Susan, thank you so very much! And you too, always - there dear Tit-Ed!

titaniumed
12-13-2016, 12:41 AM
Amanda, You made it!....

I have a friend that owns a $20 million dollar custom tournament fishing boat, it’s a 75 foot Bayliss, and he designed all the electrical systems and runs just about everything off his cell phone......but the one thing he doesn’t have, is a remote control enema. Its amazing what can be done “remotely” these days.... Is there a App you can download? I guess that would be done by an “enema techie?” He he

Too much fun, too much fun.....

For 7 years you have prepped and have been active here. That’s a long time, for sure. My jaw dropped when I saw your x-rays the other day......

Can I ask? Did Dr Schwab ever ask you why you waited so long? Wow! I know, that's a hard one to answer....

Its time to heal....you are going to do just fine.

Hang in there.....

Ed

Back-out
12-13-2016, 01:20 AM

There IS bad news, though hopefully it's all either just kvetching (about the rehab joint) - and thus over - or else not serious. 
 One of the main reasons I wanted to go from hospital to rehab, was to spare my sons - especially to allow younger son to attend to his own urgent work. In the short time I was there, however, he was interrupted by two emergencies. 



One: In the first few days, he was called by me at midnight, nearly delirious with pain. They did NOT manage my pain adequately, and this actually led to a fall. It happened in a “bad dream”, during which I I fell. “Dreaming” I was trying desperately to find medicine, I fell, then somehow got myself back to bed.

They’d refused to increase my med dose ( this wheel squeaked plenty!) and the pain got completely out of control in the course of that day. By midnight, in and out of sleep, the fall occurred. Such are the hazards of a non-resident physician who only comes out once a week (in-between he was only called for “emergencies ”). Yes, he was called finally, but only after my son drove out - 40 minutes. 

I had been in so much pain, I thought for a while I had dreamt the episode only gradually piecing it together. (A new bruise that showed up the next day confirmed it). Hopefully, the soft landing (my butt) protected me from serious harm, and godwilling that diagnosis will be confirmed when I see Dr. Schwab day after tomorrow.



The second emergency bringing my son to my bedside, was rehab’s sending me by ambulance to the nearest hospital also close to midnight. They feared I was going into shock. Their reasons were sound (and by then, I guess they were nervous about liability ): I had a fever of 101.5 and crazy BP: something/39 , then something/25 - on two separate hand pump devices. At the hospital ER, though, my BP was nowhere near as low. Hooking me up to a monitor, I was left alone (except for son) for five hours until their only doctor had time for me. Then she sent me “home” with neither an antibiotic nor the transfusion the rehab’s doc had asked for days before (n.b., I’d already had three units replaced during my scoli op). To add insult to injury, they kicked me out of bed after one scant hour’s sleep the next day. This was for my day’s scheduled PT. Even when I explained I’d lost a night’s sleep and why (they hadn’t been informed), I was warned all my services would be immediately discontinued if I kept being “uncooperative”.



So I got up, deciding to take advantage of this rare opportunity to walk (finally!) . Wondering how long I could win companions for a change (one at my side, one behind me with a wheelchair in case I fell). I kept going for 45 minutes. This created another Catch 22 as it turned out. I was later informed at my conference, that the other reason for early discharge was they couldn’t justify to Medicare keeping me longer, since I was “doing so well” . This long walk was used as the prime example. 

 Yes, I know technically that walking 150 feet could disqualify me for services under Medicare, but was told as early as my pre-op visit, that they’d provide me with guidance on maximizing my stay per my medical needs. (Dr. Schwab said he wanted me to have at least a month’s inpatient care given my age and the gravity of the surgery.). They’d told me, “no problem” - that they weren’t sticklers, that my toileting issues alone justified my longer stay. 

Sorry for the whiny digression about the rehab - I must be fishing for some knowledgeable sympathy about my bad experiences with them.


 I called Dr. Schwab last week for an early appt, on several grounds: the PT confusion (what WAS I to do?), the fall, and my last and main concern: “something” the matter with my hips/gait. 

This last, I first noted immediately after waking up from the anesthesia - my right hip and half right butt were totally numb. In the hospital, I was told by Dr. Schwab’s NP that “this is common”. Since, though, I’ve noticed that without my walker, my gait is severely impaired (son calls it a “Popeye walk”). Experimenting with aids - crutches, canes, etc. from previous leg issues (fracture, knee joint replacement), it’s clearly coming from that right hip. Hopefully, this isn’t serious - i.e., can be remedied over time, without surgery. Lucky I called Dr. S then too, as it turns out he’s leaving the country Thursday until after the New Year (when my first post op appt was to have been).



Will keep you all posted. Meanwhile, any and all helpful suggestions especially from experience would be greatly appreciated - about the post-op numbness and related problem gait. Did any of you have either problem whether or not they were related?

Back-out
12-13-2016, 01:23 AM
reading your reply above (which I'll now treat myself to).

Sorry for the second half of my update...

Back-out
12-13-2016, 01:54 AM
And best wishes for another wondrous circuit around our nearest star!

I somehow felt it was a special day, and now I know why.

Thank you for the gift of YOUR life. It is a gift to so many of us.

{{{{{{{{{{{{{ED}}}}}}}}}}}}}

Back-out
12-19-2016, 02:31 AM
Amanda, You made it!....

I have a friend that owns a $20 million dollar custom tournament fishing boat, it’s a 75 foot Bayliss, and he designed all the electrical systems and runs just about everything off his cell phone......but the one thing he doesn’t have, is a remote control enema. Its amazing what can be done “remotely” these days.... Is there a App you can download? I guess that would be done by an “enema techie?” He he

Too much fun, too much fun.....

You really cracked me up, Ed - again. I've been working on gratitude, but you sure put that in a new slant !


7 years you have prepped and have been active here. That’s a long time, for sure. My jaw dropped when I saw your x-rays the other day.....

OK, now I'm going to pull a switcheroo - answer a question with a question. Does this mean you were astonished at how bad my "before" really was (the kyphosis especially) - or (?) the opposite? Guess I've been in my own skin so long, I've lost all perspective, but I would appreciate clarification.



I ask? Did Dr Schwab ever ask you why you waited so long? Wow! I know, that's hard one to answer....

Its time to heal....you are going to do just fine.

Hang in there.....

Ed

I told Dr Schwab exactly why my surgery had been delayed (and Dr. Errico too FTM - when I met Dr. S. for the first time last year, it was to have been a tandem operating team). To wit: because I didn't have the necessary social/financial support; SIL had backed out of her commitment (it IS a big deal, to say the least). At the same time, my and sons' inheritance was reduced by over half by dysfunctional family machinations.

This left me unable to plan.
Especially, as I became aware serious neurological deficits were resulting (ones it became increasingly unlikely could be corrected), it was just too depressing to persevere with research - this included following threads here. (Perhaps that most of all as threads here so come to life, as I enter the stories of fellow warriors here in imagination!). I was forced to wait until someone else in my small circle would volunteer (which younger son finally did, to my immense gratitude). Even that plan was delayed, though, by one of many medical snafus arising in the interim - the main one last year was breast cancer, culminating in a double mastectomy and add-on surgery.

I thought I'd mentioned these facts, but over a period of seven years who can keep track of it all? You're already too amazing with your support and upbeat spirit for one and all (and despite your own difficulties)!

Gratefully,

Another member of your fan club

golfnut
12-19-2016, 02:08 PM
Amanda,
Glad you are "on the other side" and can start the recovery process. Best of luck for a smooth recovery.
I noticed your post to Melissa's thread about there being fewer and fewer people sharing information on the forum. For probably 5 years, I checked the forum for posts daily and always replied if I thought I could give any support or suggestions from my experience. Now, I seem to waste more time on Facebook and drop in only once in a while to see if I recognize any names on the forum. I truly don't know what I would have done without the forum before my surgery and during the recovery. It helped so much to "talk" with other people who truly understood and had meaningful experiences and information to share. I really don't know why there aren't as many posts as in the past but I think it's unfortunate.

I still have numbness on my lower back and butt area on the right side, but it's not a concern for me.

Hang in there! It gets better eventually.

golfnut
12-19-2016, 07:12 PM
What a horrible experience you had at rehab! Did you get an appointment with Dr. S before he leaves?

titaniumed
12-19-2016, 10:38 PM
Amanda, It was the kyphosis component. If I would have seen your x-ray many years ago, I might have said “wow”.....I know I wouldn’t want to have my spine continue to deteriorate with the pain I was having into my 60’s and beyond. It was bad enough in my 40’s and I still cant believe I struggled with all the pain that I had for all those years. I do have the ability to ignore pain. Its got to be mind blowing for me to do anything about it....Usually when someone posts x-rays, I will take a peek. This comes after growing up with spinal deformity years ago wondering if I was the only one,(before internet) and of course judging pain scale by curvature. I have seen some OMG huge x-rays, and wonder how a person can withstand it. I also know a 100 degree plus kypho (age 40) that has no pain which is hard to believe, but you know that some day he could have an abrupt reality check. (smug face) Kudo’s to those that can hang...I couldn’t. I tried.

Your rehab experience doesn’t sound good, I assume you were weaned to orals? I wasn’t on oral meds in the hospital and weaned home alone which was really painful....

Dysfunctional family machination is something I understand......but that’s another post. (smug face)

Thanks for the appreciation. Hope you feel better soon...

Ed

susancook
12-24-2016, 04:19 AM
Amanda, if it makes you feel any better, Ed had an OMG experience when he saw my kyphosis too.

You are a survivor! Continue to heal. Time helps, really.

Susan