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Post by cherylm on Jan 15, 2017 5:02:43 GMT -7
Hi, All - I've spent most of the past year fiddling about with a nasty little spot on my stump that had become problematic after looking basically harmless for a long, long time. It turns out that the little patch of thick, rough skin at my distal end was the entry point to a large fistula that went right through to the cut end of my tibia. Also turns out that said fistula was harboring a "small and inactive" colony of MRSA bacteria...that's only the infection that cost me the leg originally. Sooooo....2016 was devoted to assorted small-scale revisions in an attempt to get the fistula to clear out the MRSA and heal itself. Just in time for the holiday season, the last of these minor procedures failed and the fistula opened up and started squirting harmless-looking -- but bacteria-filled -- discharge out the bottom of my stump. I'm sure everyone knows what's coming...major surgical revision, removal of about 2-3" of soft tissue and bone, a long and slow healing process, and two now-useless legs. The only good thing is that I do still have my knee, although the stump is now pretty darned short. And now I have to practice what I keep preaching to new amputees: Be patient, go easy, take your time, etc., etc...... After already fussing around for nearly a year, I'm just not in the mood to be patient! All of the assorted mobility aids have been pulled out of storage and are now cluttering up my apartment...home nurses are parading through to check on my healing...a physical therapist is trying to be helpful (and actually has given some good advice) but keeps trying to turn my already small and cluttered apartment into a jungle of floor-to-ceiling transfer bars. And then there's the DME provider who keeps promising to either deliver supplies or repair existing equipment, setting up appointments to come see me, and then not showing...or losing the work order...or bringing bizarre items that are not what was requested because "we don't have that in stock, so here's this other thing." I'd managed to forget just how frustrating all this "new amp" business could be. I've been happily independent for nearly 12 years, and I want my life back again!!! Okay...I'm all "vented out" now...if someone could give me a virtual pat on the back and a "there, there, Cheryl, you'll be fine eventually," that might help.........  |
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Post by snowyh on Jan 15, 2017 5:17:33 GMT -7
You got it, Cheryl! Sorry to hear of your 2016 travails, as I had no idea until now you were going through all this--had you posted something earlier that I missed? And it took me a few minutes to figure it out, but the "two now-useless legs" would be referring to your prostheses, right? Please don't tell me your other leg's gone bad! What a pain to have to go through the revision surgery and all that that entails, especially the psychological adjustment. The upside (I guess) is that you probably have insurance, and with luck it's not the kind of insurance that's on the fast track to being repealed. But it sounds like you need to find a new DME* guy ASAP. Anyway, here's a virtual pat on the back, hug, and high-five from Texas. Hang in there, girl!
Helen
*durable medical equipment
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Post by cherylm on Jan 16, 2017 1:40:45 GMT -7
Thanks, Helen...I kept holding off on saying anything about all this stuff because it all started out as such a "trivial" matter. Then, as it kept escalating, I just started trying to ignore it all. However, this last surgery took it beyond "ignoring."
There are a few things to be thankful for in all of this. I do have good insurance and it's so far covered the vast majority of doctors, hospital stays, transportation, and prostheses. (I feel for anyone who's looking at the possible repeal of their health coverage.) And my right leg, while getting sore from carrying so much of the burden right now, is basically in good shape. And yeah, the "two useless legs" are my everyday prosthesis and my water leg, both of which had only recently been updated. My regular walking leg will ultimately be paid for by insurance...but the cost of the water leg is going to be on me. As for my DME supplier, I sure wish I could get rid of them, but the come "bundled" with my insurance...the best I can do is complain about them to me carrier, which I have done.
So, overall, things could be worse...and venting about them has helped...and I deeply appreciate your friendship and support! Thanks!
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Post by stonecutter on Jan 16, 2017 10:06:04 GMT -7
Wow! Sorry to hear of your difficulties. Sounds like you've been through and are going through a lot. Those calloused areas on the tibial end... I have one of those. It cracks and bleeds and puffs up all the time - I'm totally going to start paying attention to that a bit more after seeing this.
I wish you a swift and total recovery.
2016 was a real mother-effer for so many people...
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Post by Ann on Jan 16, 2017 11:38:15 GMT -7
Sorry to hear about your op Cheryl. Never worry about venting, think we all need to do that from time to time, and I think you are entitled after what must have been a difficult few years for you one way or another. Hopefully, this revision will sort everything out and will be a new start for you in 2017. Know how frustrating the 'new amp' process is but, however many times we do it, but you'll get there and hopefully very soon be up and getting around again
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Post by cherylm on Jan 17, 2017 4:34:43 GMT -7
Thanks, all! Trevor, has anyone ever done any sort of scan to see what's UNDER your calloused area? I carried that odd little spot around with me for well over a decade, watching it occasionally "crack and ooze" a bit and taking it to various doctors who looked only at the surface callous and kept ruling it "harmless." It took a very persnickety, curious, and determined infections specialist to push through the MRI that uncovered my fistula. And, as much as I hate having to go through this revision, I'm awfully glad that the fistula and its MRSA colony got found!
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Post by stonecutter on Jan 17, 2017 8:10:38 GMT -7
Not really. We just keep grinding the socket to make more room for the tib end. This has been an issue ever since the move to scanning / CNC milling of the socket. I never used to have this issue back when they used to use plaster to cast. Could be a coincidence, but since they took the craftsmanship out of socket making, I haven't had a decent fit in the socket. The thing about my callous is that when the weather gets dry (winter) I usually have to keep it moisturized. I do so by using Polysporin under a bandage that gets changed daily. It keeps it from drying out and provides me with a touch of pain relief when I can feel the pressures on the cracked callous when I'm having an active day. I can usually get it to heal up completely. Then I stop with the polysporin and bandage and the cycle restarts. |
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Post by cherylm on Jan 17, 2017 23:14:14 GMT -7
That sounds so much like my stupid little "spot." Only difference is that I had to moisturize all year long, both morning and evening in the winter. That, and the fact that the callous was about 2" away from the end of my tibia, with the fistula connecting the two. Do keep an eye on it!
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Post by stonecutter on Jan 18, 2017 8:53:45 GMT -7
This thread is proof that amputees need to share these experience as much as possible. Something that wasn't even on my radar now sure is now. Thanks Cherylm!
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Post by bassett on Mar 18, 2017 20:40:40 GMT -7
Hate to hear that Cheryl. You usually the first one to reply to posts in this forum and give sound advice. I hope you always feel comfortable in sharing these types of things with us. It's all useful. Though we may all be different, we all have 1 important thing in common and it's cathartic to talk it out.
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Post by cherylm on Mar 20, 2017 3:16:14 GMT -7
Hi, gang...just a brief update on my part. Things are still progressing slowly, but they are indeed progressing! The incision is totally healed, the swelling seems to be almost gone, and I've been in a rather fragile "check socket" coupled with my old components for almost three weeks now. I'm hoping that we'll start construction on check socket #2 this week sometime and that I'll be seeing the way to test and definitive sockets in the not-too-distant future.
My stump looks nothing at all like its "old self"...there's been a lot of adjustments and more-than-minor tweaking going on to get me well balanced again. I'm still relying heavily on my walker and wheelchair to get around, but I am able to drive again and can walk for about 15 minutes at a time with the assistance of the walker. That's getting easier day by day and I'm sure that by the time I have a socket that's not such a "touchy" creature I'll be strong enough to take USEFUL walks WITHOUT the walker. There are some major differences walking with such a very short stump, and my CPO keeps reassuring me that we'll be able to do much more to stabilize things as the adjustments continue.
Here's something I didn't think about until now: When you have a very short tibia and fibula, there's not much connective tissue to hold the fib in place....it keeps lunging off to the side and a good number of my various adjustments have been devoted
keeping me balanced so that I don't lunge off to the side with the fib. Feels like being a toddler just learning to walk...sigh...but my guy insists that we will create a socket that will keep the fib from roaming, so I'm going to take his word for it. He's worked near-miracles for me before!
That's it for now...updates to follow!
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Post by cherylm on May 19, 2017 2:48:39 GMT -7
I'm back again...only TWO MONTHS later and my first day breaking in my new "final" socket! There are still issues with my balance, but I've been out of the "walking" game for so long that I'm hoping it's just because I'm still weak. The socket itself feels really good, and the fibula is nicely contained, but my stump is so short that it doesn't provide enough leverage to keep the leg straight: it keeps trying to bend outward, making me feel oddly bowlegged.
I'm now working hard at building up muscles to hold the leg vertical. If I can't manage that, we're thinking of getting me a smaller pump, which would give us a little more build room to install some additional wedging on the outside edge of my foot...beyond that, we might be looking at a knee brace to stabilize the side-to-side movement of my knee. I don't especially want to have to wear more gear, so I'd welcome any thoughts, prayers, and general good vibes that anyone might feel like sending my way!
At this point, I'll just be practicing walking for a week and will then go back for an evaluation...with luck, I'll have improved enough to avoid the knee brace. Meanwhile, life goes on.....................
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Post by snowyh on May 19, 2017 4:52:44 GMT -7
Thanks for keeping us informed of your progress, Cheryl. It seems to me that a knee brace would only weaken those muscles and ultimately become a permanent part of your daily routine. My guess is that as soon as you build up your "keeping leg straight" muscles you'll be good-to-go, and I'll bet you're just the gal for the job! Sending good vibes westward...
Helen
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Post by stonecutter on May 19, 2017 7:08:23 GMT -7
One thing I've learned over the last couple of years is how out-of-balance our bodies are when we are amputees. My chiropractor is getting rich! The weight difference, the favoring one side, the atrophy, the misalignment of my hips all contributes to other issues like back and neck pain, pain in my hip joint(s) and most recently - bone spurs in my remaining foot.
Sounds like I'm complaining - but I'm kinda not - (well - yeah I kind of am...) I guess the point is that I hope the bow-leggedness doesn't wreak havoc on your knee, back and hips.
Keep on it - I know you'll persevere.
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Post by cherylm on May 20, 2017 1:52:41 GMT -7
Thanks, guys........!
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Post by bassett on May 22, 2017 6:19:16 GMT -7
Keep on truckin'!!!! It sounds like progress is being made... Sometimes I feel like it's a crawl, but it's still moving in the right direction.
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Post by cherylm on Jun 19, 2017 1:56:36 GMT -7
AAAAARRRRGGGGGGHH! Okay, that's my temper tantrum for the day. The latest update is as follows: I'd gotten strong enough that I was starting to be able to hold the prosthesis vertical...I was in the process of transitioning from the walker to just a cane as a mobility aid...I'd started driving again and enjoying it greatly.......and then the knee on my "GOOD" leg gave out. Yep...after a year of doing "double duty," my poor, abused right knee just...well...failed. I went to stand up, heard a loud "snap!" and the knee gave out and I sat back down with a thud. I'm sorry...here it comes again: AAAAARRRRGGGGGGHH!
The diagnosis is not terrible: it's been judged a mild tear in my meniscus. Seems that I've developed some arthritis in the knee, along with a bone spur that managed to snag itself on the meniscus and create a small tear. They sent me off to see a Sports Doctor who says that he's quite certain that the knee will heal...IN POSSIBLY ABOUT THREE MONTHS. AAAAARRRRGGGGGGHH!
And so now I DO have a knee brace...for the GOOD leg...and I'm wrapping and icing and doing a whole new round of physical therapy exercises...and I use the wheelchair for long-distance travel and the walker for shorter distances...and I'm back to "no driving" until things improve a little more. Honestly...this is getting REALLY frustrating..............................AAAAARRRRGGGGGGHH!
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Post by stonecutter on Jun 19, 2017 11:19:30 GMT -7
Well that just sucks. When it rains it pours...
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Post by cherylm on Jun 22, 2017 2:37:14 GMT -7
Thank you for putting it so succinctly, Trevor...I agree! (I did have a slightly better day on the right knee, though....)
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Post by cherylm on Aug 2, 2017 0:44:51 GMT -7
It's me again, with another update.......
The meniscus is still sore, but healing, and I'm at least back to being able to drive again. I have a new, lighter, and more flexible hinged brace on that side...but it's pulling me off balance on the prosthetic side. (Sigh....) I went to see my leg guy today, and he's suggesting that we add an "offset" to my prosthesis so that he can move my pylon and foot farther out and, hopefully, improve my stability. He's also suggesting that we try a temporary knee brace on the prosthetic side, at least until the brace comes off on the meniscus side.
Sooooo....now it's TWO braces and the prosthesis. I'm just one big mess o' gear below the waist. Oh well....at least I'm starting to be able to walk again. I can get around fairly well on the walker...I can go about 25-30 feet with a cane...and I've staggered around my apartment semi-unaided. (That means that I grab at furniture and the walls a lot when I start to tip.) Basically, I'm still feeling like a weak little old lady...but hope is starting to rise again. The offset for the prosthesis should come next week, so we'll see what comes next!
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Post by stonecutter on Aug 2, 2017 6:26:24 GMT -7
Wow - it must be a real chore to get assembled... I hope that works for you in the interim until your knee heals. Sounds... cumbersome.
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Post by snowyh on Aug 2, 2017 15:49:16 GMT -7
Ah, driving... the ultimate independence. So now you're a cyborg--that's cool!
Helen
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Post by cherylm on Aug 4, 2017 2:24:23 GMT -7
Thanks, gang!
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Post by cherylm on Aug 11, 2017 2:59:23 GMT -7
I'm back again....the new offset plate was installed on Tuesday, AND IT'S A SUCCESS!!! I'm back on track to walking normally again, and there's a lot less strain on both knees. Now, the leg looks a little "odd"...my pylon is now positioned so far to the outside of my socket that it looks like it's zig-zagging to my left...but, hey, I can stand without wobbling and walk with decent balance and speed!
I see my physical medicine/rehab doc on Monday, so we'll get her opinion on the state of the meniscus...but I haven't had to ice that knee for two nights in a row now, so I'm hoping for a good assessment.
Dare I say "HOORAY"?
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Post by stonecutter on Aug 11, 2017 7:19:48 GMT -7
Awesome!
I hope you'll get through your knee issues now with minimal pain. That deep, inside-the-joint knee pain really sucks. Do they think you'll need to get it fixed up?
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