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Back-out
11-21-2016, 06:49 PM
Entry for latest ever surgery announcement (late but long!).


I wanted very much to announce this sooner (along with questions - guess you're spared that!), but there was a possibility of delay two weeks ago for reasons I look forward to discussing with you all - hint, has to do with new world of Pain Management docs and by the time it was resolved, it was - (almost) now.

I just got word that I'm to be at the Hospital for Special Surgery at 5:30 AM for a 7:30 op. Gauging by the accidental message I got informing me the plastics guy is scheduled to come at 4 PM, I 'm guessing Dr. (Frank) Schwab is expecting my procedure to last 8+ hours - a good bit longer than he guesstimated to me.

I'm to have a fusion from T4 to the pelvis with one T-LIF, iliac crest harvesting (posterior - new approach, thank goodness). BMP and odds and ends probably to try to open up some of the pinched nerves governing elimination and left foot drop. Without any real hope that they can be corrected, though, after all the delay in the surgery (couldn't proceed until son basically grew up enough to be willing and able to help afterwards). I DO still need to hire female help, for hands on personal care we've all agreed is not up sons' alley). Probably to be in hospital a week or so, before moving to PA rehab (acute, sub-acute? As yet unknown, but we've visited two we liked - hope they are approved and have openings.)

I've been so frantic preparing owing to snafus and last minute applications of Murphey's Law, I didn't have time to write much of anyone in my internet social circle - not even you all who have done so much to help inform my decisions on and off during the last seven years. That’s when I began to investigate the great What If? This is now my loss, as I missed out on one of your great bennies - the super support system. Hope it can be somewhat mobilized still, though more to help with my recovery (the big question mark) than helping psych me up to taking the leap.

Perhaps that's as it should be, because my extreme busyness made it almost impossible to worry about what lay ahead. I expect it will hit me as I lie shivering in the pre-op room talking to the anesthesiologist and hoping I get a good phleotomist (not one who harpoons me on the pretext of “rolling veins” like two ops ago). In fact, I’ve had five operations since this time last year, and that AFTER breaking my leg (so I know it’s not my veins). It’s been quite a year, though none of those problems were structural. 

I didn’t even sleep last night owing to a combination of lost sleeping aid and a suddenly loosened dental implant. (That required spending much of today tracking down an urgent care dental clinic to screw it in tighter. Do NOT think they’d have agreed to intubate me with a mysteriously loose tooth.)


The die was cast. I figured my back wasn't going to get better on its own, and as the kyphosis was deteriorating ever more rapidly, I 'd better take a shot at an improved quality of life. Besides, at seventy, I knew I was bound to run into a disqualifying condition, waiting. Last year's breast cancer was a sample shock, despite my blessed reprieve. 

My fears are the usual ones, adding in special worry about sciatica since I have thus far had no leg pain (JINX!) not counting foot drop on one side. Then too, being no stoic, I am anxious about today's pendulum swing demonizing opiates (what if I'm one of the unlucky ones who end up in more pain afterwards - and am expected to make do with accupuncture or other makeshifts?)

Before I know it, I will probably be waking up in

 (let's face it) excruciating pain - perhaps with little sense of the passage of time. I'm no stranger to pain but from the vivid descriptions I've followed, I gather this is a whole new altitude in pain. I've never yet rated my pain a 10 leaving room for what I knew COULD be, so I hope I can top out there and stand it in the faith that it WILL get better. Besides, I don't want to scare my sons who will be there with me, even though they are now adults. I am infinitely grateful for their helping out. 

And for you.



And now to fill out my medical directives update, while moving my gear from the wheeled bag they don't allow.
 Sons have already flipped coins to see who had to apply my antiseptic sponge (the sponge-stick thingie won't do). And then to bed until...


,
Dan or Ted will probably update you afterwards. God bless them both! (When they grow up, they really do come in handy, don't they?)



titaniumed
11-21-2016, 09:32 PM
Amanda, this is tomorrow.....wow!

Make sure Dan or Ted posts for us, will be thinking about you tomorrow.

You can do this....

Hang in there

Ed

susancook
11-22-2016, 12:05 AM
I wrote a long entry that went to a black hole as I was logged out when I tapped post.

Short version: two 70 year old women together, both doing the best with what they have. Over past couple months, we have talked.

Talked with Mandy and sons tonight and I will post if son do not.

I got her back.

Susan....remember me? ***Keep this thread about Mandy. I will post more about me another time

kennedy
11-22-2016, 01:15 AM
good luck with your surgery

susancook
11-22-2016, 01:48 PM
I have been texting back and forth with Mandy's sons. They seems pretty well organized and realistic.
Surgery started on time and no updates yet.

There is a plastic surgeon that does the skin closure. Is that only in NYC? In the Northwest, incisions are battle scars, so who needs a plastic surgeon?

Susan

Back-out
11-22-2016, 02:13 PM
UPDATE (posted by Amanda's son's Ted / Dan): Dr. Schwab is finishing up last bits of the surgery. We will be getting update soon. She's been in there since 7:30 AM—it's about 2 PM now so she's been in the OR for 6 1/2 hours at this point. Will post with updates once we get the verdict from Dr. Schwab.

Back-out
11-22-2016, 02:41 PM
UPDATE FROM TED / DAN (Amanda's Sons):

2:13 PM:
Dr. Schwab is finishing up last bits of the surgery. We will be getting update soon. She's been in there since 7:30 AM—it's about 2 PM now so she's been in the OR for 6 1/2 hours at this point. Will post with updates once we get the verdict from Dr. Schwab.

2:40 PM:
Dr. Schwab just talked to us. Surgery went well, no complications. BP / Nerve impulses were stable throughout. Correction looks good but too early to give a number. He was able to decompress nerves significantly around L3/4 and L5s1, which may help w/neurological complications. Right now she's being sewn up by plastics team and she will be transferred to recovery room. Then we'll be able to go see her. Not sure if she'll be intubated over night or not yet.

4:35 PM:
She's just been brought into recovery and getting settled. We're going to go see her soon. 9 hours since they took her!

5:00 PM:
Dan just went to see her. She didn't look great but didn't look as bad as we were afraid. Wasn't all bruised but very pale. Mumbling to herself in her sleep. Looks noticeably taller already. She's going to stay in recovery overnight. We'll get another update from the doctors in a few hours in terms of what to expect the next few days.

8:00 PM:
Went to see her last time today. She's going to be held in Recovery overnight. She's able to talk and understand what's going on. Very glad to have some ice chips for her dry mouth! Complaining about being itchy but her pain doesn't seem to be that bad except when they adjust the bed. Tomorrow or the day after she'll probably be able to dictate an update herself! She doesn't loop great (as you can imagine after surgery) but not as bad as we were afraid. Hopefully she gets some rest tonight as she was woken up last night by loud people in our hotel and thus went into surgery very tired (which probably isn't helping her to be super coherent right now). Going to see her in morning.

golfnut
11-22-2016, 06:47 PM
Amanda,
My surgery was almost 6 years ago and I don't check in nearly as often as I used to. I will check in regularly to see how you are doing with recovery. I'm hoping you have a smooth recovery.

Marianne
11-22-2016, 10:47 PM
Amanda, wishing you a smooth recovery. I am happy you have your sons there with you and they are looking after you and updating the forum.
Family means so much at times like this.

titaniumed
11-24-2016, 09:42 AM
Ted/Dan

I am hoping everything is ok, have they gotten her standing up yet?

I also hated when they would adjust my bed....it was usually without warning, they would simply hit the button and wait for the instant reaction. I guess there will always be someone who is clueless around scoliosis patients.....

Your mom has a vast understanding of what to expect since she was quite active around here for many years. Its not an easy thing doing these surgeries, and recovery is a slow process...

You guys hang in there....

Happy Thanksgiving!

Ed

Back-out
11-25-2016, 08:50 PM
This is Dan posting for Amanda; Mom is sleeping after another day of slow progress. She walked twice as far today (16 feet!), is starting to eat a little bit, and feels great when she looks in the mirror and sees herself straighter and taller.
Ted is getting some of his reading and consulting work done on his computer, and I am hanging out in the room with Mom. Later tonight we'll take the train back over to Queens and sleep in the hotel. Mom will stay in the hospital at least until Monday, and then off to either acute or sub-acute rehab depending on how well she's doing with the walking.
Thank you all for your well wishes and support on here! I will continue to keep you updated though hopefully soon Mom will feel well enough to write some herself :)
Hope everyone had a happy Thanksgiving!

Back-out
11-26-2016, 06:39 PM
This is Dan posting for Amanda again. She is doing OK, eating more and her digestion is working again. She walked almost to the end of the hall, about thirty feet. Ted and I are sitting in her room making jokes and annoying her :). We got her a nice bouquet of flowers today, though I managed to spill some of the water all over her floor. She is reading all your posts and is very thankful for all your support. The nurses and doctors here are attentive, caring, knowledgeable, and patient. She now has the entire two person room to herself, and her bed has been moved next to the window so she can look over the East River and see the sky. She has four drains, which no one else around here did, because her surgery was extra extensive. She required three units (250ml) of blood during her surgery apparently, and suffered one small dural tear, but she is on the mend. We are also trying to decide between acute and sub acute rehab facilities in Pennsylvania, either Wellspan or Valley View. She especially wants a place that has beds with rails and that will help her sit up as she is forbidden from BLT.

We will update you again tomorrow. She cant post yet because she can't type well enough in her bed unfortunately, so I or Ted will post for her.

Thanks for all the support and information you all have provided throughout this many year process!

Mlindhardt
11-27-2016, 11:49 AM
I had spinal fusion with Dr. Schwab in May 2016 -T4 to sacrum. I was 61 at the time. While the recovery was more difficult than I expected, it was absolutely worth it. I also needed a plastic surgeon to close and had the dreaded drainage bags until a week after discharge. I've been using silicone strips recommended by the plastic surgeon and my scar is fading. Dr. Schwab, his team and HSS were great, even the room on the East River. Good luck with your recovery.

I also want to thank all the regular posters on this site. It was extremely helpful in making the decision to proceed and getting tips to help with recovery.

titaniumed
11-28-2016, 12:09 AM
Dan, the drains drove me crazy, I had a bunch of them.....It might not be a bad idea to ask about pulling some of them out, it was a big relief for me....and of course that 1st shower is heaven!

Mlindhardt,

Hope things are doing better now, at 6 months, there is still a ton of improvement coming for you!

Welcome

Ed

Back-out
12-07-2016, 11:34 PM
Hi everyone,
Just to give you all an update (this is Amanda's son Ted writing in). She spent two hours writing a long reply here the other night when she was able and then accidentally clicked back or something and deleted it! So she'll write in when she has a chance.

Things have been up and down. She has a fever and her incision is warm to the touch—she's concerned it may be infected. Hopefully it's not—every nurse and doctor who has looked at it has said it looks great. But given that she has a fever it may be.

We're going to New York to see plastic surgeon who sewed her up next Friday, though now we're going to see if we can go sooner as Dr. Schwab leaves the country till New Year's starting next Thursday. She's also a bit concerned about her gait. Her hips seem quite unsteady and she's not able to stand at all without her walker. She thinks this may have gotten slightly worse rather than better in rehab, but she's not sure.

She's getting discharged from rehab quite earlier than she hoped (this Saturday)—roughly a week and a half after being admitted. She's quite mobile (with a walker) and able to get around and do basic tasks. They say that she no longer needs to be there as she can continue progressing with in home therapy.

In any case, aside from all this, things have been good too. Her back is very much straighter—the big bump in the middle is now gone. I think she's taller, though her official height measurement shows her as being the same. My suspicion is that in the past, when measuring her height, she's really tried to stand up tall and thus she was actually shorter than her "official" height when walking around hunched over. Thus, she's probably taller than she was, even though the numbers might not show it.

She wanted me to post these x-rays, before and after. Those screws are scary! I feel like I could fix the house with them! That said, what a remarkable transition!

CLICK HERE TO SEE THE XRAYS ON DROPBOX (https://www.dropbox.com/sh/0lu2jnpw685jqlo/AAAfpPS_kHXgiVeI3sd2a6-6a?dl=0)

titaniumed
12-08-2016, 12:18 AM
Ted, Those are incredible x-rays! Wow!

The doctors and nurses will know what to look for as far as infection is concerned. Try not to worry too much, recovery truly is an up and down (see-saw) thing with good days and bad. We push too much and it can result in pain.....

Our walkers are quite important to us in early recovery.....It’s a slow and steady process walking with them until we get comfortable on our feet. One of the hardest parts is right after we stand up after getting out of bed. I would simply stand there for long periods before proceeding to walk. Standing is also ok with the walker as its also exercise. It will all come around in time. Patience!

Tell her I said congratulations!

Ed

Holly-in-Denver
12-09-2016, 01:00 PM
I'm 7 weeks out from surgery and I'm using walking/hiking poles when I go for walks in my neighborhood. Once Amanda is off the walker and ready to go for walks, I think she'll find these very useful. They help me keep my balance but still allow my muscles to strengthen as I walk. I got mine off Amazon ... they have a number of affordable options, from $30- $100. Get some with foam inserts on the straps ... much more comfortable. These will also work in a shopping mall if you need a place to walk in bad weather. Keep us updated and best of luck !!!

susancook
12-10-2016, 12:34 AM
Correction looks amazing!
Hugs, Susan

Back-out
12-13-2016, 06:49 PM
I'm 7 weeks out from surgery and I'm using walking/hiking poles when I go for walks in my neighborhood. Once Amanda is off the walker and ready to go for walks, I think she'll find these very useful. They help me keep my balance but still allow my muscles to strengthen as I walk. I got mine off Amazon ... they have a number of affordable options, from $30- $100. Get some with foam inserts on the straps ... much more comfortable. These will also work in a shopping mall if you need a place to walk in bad weather. Keep us updated and best of luck !!!

Great advice, Holly. I remember hearing about them early in my search but forgot completely. Especially apt to be handy as this Winter in Central PA promises to be brutal (Mall walking is where it will be indefinitely.)

Back-out
12-13-2016, 09:19 PM
So here's the continuation. Note (sorry) it's bad news too - couldn't change the title with
edit function.

http://www.scoliosis.org/forum/showthread.php?15753-Entry-for-latest-announced-surgery-POST-OP-Update-THE-GOOD-NEWS!

kennedy
12-13-2016, 11:20 PM
Amanda your correction looks awesome

Back-out
12-18-2016, 04:19 PM
I had spinal fusion with Dr. Schwab in May 2016 -T4 to sacrum. I was 61 at the time. While the recovery was more difficult than I expected, it was absolutely worth it. I also needed a plastic surgeon to close and had the dreaded drainage bags until a week after discharge. I've been using silicone strips recommended by the plastic surgeon and my scar is fading. Dr. Schwab, his team and HSS were great, even the room on the East River. Good luck with your recovery.

I also want to thank all the regular posters on this site. It was extremely helpful in making the decision to proceed and getting tips to help with recovery.

Thanks for checking in on this thread. I've been meaning to write you and a few other Dr. Schwab pts (befores and afters). If you see this, I'd much appreciate knowing what you were referring to re "recovery more difficult than expected". Also, what condition are you in now? Especially interested in my troubling areas (details elsewhere): FUO*, gait problems (seems to stem from numb right hip, both problems showed up immediately after awakening after surgery). Also wondering about others' experience with walking at various post-op stages. I'm assuming (?) unless otherwise stated, this refers to walking with a walker. When does one tend to manage without?

I will write elsewhere a brief summary about what's up with me these days - 3 1/2 wks post-op. (hmm. Or should I start a separate thread?). Dr. Schwab is a consummate pro and possessed of real dignity and compassionate. Glad to have found him. Last year, the plan of action was for him to operate on me in tandem with Dr. Errico but in between, Dr. Schwab left that facility to accept the appointment as head of spinal services at HSS (Hospital for Special Surgery). I envy his patients who live nearby, as it is quite a shlep to get to and from my location in Central PA.

Dr. S was intending to fuse me from T4 to the pelvis, but (at least from my Xrays - opinions?) it looks like he began at T1/2. Still that makes us very similar fusion lengths which makes your experiences all the more interesting to me, however much "everyone is different" from countless POVs.

*Fever of unknown origin

Back-out
12-18-2016, 04:27 PM
Amanda your correction looks awesome

Many thanks for your congratulations and good wishes in advance of my surgery (especially considering my very last minute announcement! ;) )

I'm thrilled with the straight back too. (One of my son's refers to my surgery as my "conversion therapy"! Lol)

Back-out
12-18-2016, 09:22 PM
Amanda, wishing you a smooth recovery. I am happy you have your sons there with you and they are looking after you and updating the forum.
Family means so much at times like this.

Many thanks for your good wishes, Marianne. Helps a lot!

Back-out
12-18-2016, 09:28 PM
Amanda,
My surgery was almost 6 years ago and I don't check in nearly as often as I used to. I will check in regularly to see how you are doing with recovery. I'm hoping you have a smooth recovery.

I remember you well from my first intensive correspondence here six-seven
years ago. I was inspired by your story especially as we are close in age. Also since you were athletic and positive.

Thanks for checking in on me! My recovery is definitely full of ups and downs (about which I'll write later, perhaps elsewhere). However, compared to some of you (surely other "old timers" will readily think of names), I am fortunate indeed.

Back-out
12-18-2016, 09:32 PM
I wrote a long entry that went to a black hole as I was logged out when I tapped post.

Short version: two 70 year old women together, both doing the best with what they have. Over past couple months, we have talked.

Talked with Mandy and sons tonight and I will post if son do not.

I got her back.

Susan....remember me? ***Keep this thread about Mandy. I will post more about me another time

Susan, I loved your posts about "Mandy in surgery" and afterwards. Made me feel I was cared about like the old friends who used to call me Mandy (intending to return to that from Amanda, as I told you. The Amanda years weren't the greatest - hopefully, the Mandy years, old and renewed, will be happier and healthier).

:)

golfnut
12-31-2016, 09:09 PM
Amanda,
How are you doing? I know it's so early in your recovery and it's the time when it takes a ton of patience for one to deal with the pain and the healing. I tried to keep focusing on the "light at the end of the tunnel". I got there!