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Thread: My feet are rotting away!

  1. #1

    My feet are rotting away!

    so the condition of my feet has gotten pretty out of hand. Obviously this leads to many other problems, most notably increase in spasticity which only makes matters worse, not to mention the increase in dysreflexia that I'm already having too much of before this. I'm officially bed ridden yet again. Errantly there's been abnormalities in my blood work after my pancreas issues, now we're noticing that I have low platelets which can be a problem for healing, and can actually be extremely serious for people in our situation susceptible to bedsores and poor circulation. I've been referred to a haematologist and, that happened about eight weeks ago but most likely that referral went to shit because I just recently found out though that my doctor I've had for the majority of my injury out of hospital has just quit no notice no Explanation . So the replacement, a.k.a. my new doctor can't get an appointment till December 20 so I have to bring him all up to speed with everything like the fact I've been having uncontrollable and in most cases unexplainable autonomic dysreflexia The past six months that seems to be becoming more common, unexplainable perfuse sweating, my spasticity has steadily been increasing even before this nonsense, I have a large synrix through most of my cervical spine, i've been fighting infection after infection since injury and now resistant to all oral antibiotics, The strange happenings with my bladder pressure over the last month suddenly squeezing urine through my penis a few times a day despite nothing wrong with the catheter, i've been having serious issues with my pancreas and spleen and now I'm getting two new bedsores for every One that I spend three months+ healing. As well as the other more basic spinal cord injury secondary complications osteoporosis, nerve pain, shoulder problems etc.

    It's just a complete cluster fuck seems the more I try and resist and fight the paralysis rot the worse off I get. Ultimately the biggest issue is I can't handle any of this myself, I'm at the mercy of other people's Goodwill and what I can afford, outside of that does not matter if a bandage comes off, I pissed myself, go dysreflexia if no one is there I have to wait patiently; try to do that with reoccurring severe AD. CC AC has been and an utter failure The wound nurses barely show up, so my mother has been trying her best but things of gotten completely out of hand. There's another sore on my calf I don't have a picture of apparently it has gotten substantially worse from yesterday to the point that it's abnormal and the low platelets is likely playing its part. So we're now in bitch mode trying to do my traitorous doctors job and get in with that hematologist. Luckily I do see my urologist tomorrow, I've had a bad month with my bladder pressure and urine going where it shouldnt but I'm finally getting the Botox; I didn't think I was going to make it to this appointment we tried to have it earlier but they would not. Not over exaggerating the dysreflexia was getting really bad I was keeping my DNR handy in the event of a stroke,not to mention urine reflux but after explaining the situation she decided to make time to do A unplanned kidney ultrasound after the Botox. If things are serious and it's my time then cool it's my time I'm just sick of being on the fence of dragging me along in agony and helplessness not to mention burdensome. I've already made the decision that if I need to have the spleen removed and/or there's been kidney damage then that's that,I don't get enough out of this to even remotely justify anything like that; i've made that clear to those close they more than understand. But as bad as it is , And will likely only be minor damage at worst. We're going to plead with my urologist to help with a new referral to the haematologist showing the state of my bedsores and how quickly these came to be, not to mention my extremely troubling blood work that landed on the internal medicine floor A month ago, and continued to show another problem as my lypase returned to normal. I'm sorry I'm ranting but holy shit, is this one shit show and the system is completely and utterly flaud. I could not imagine what it must be for someone that actually does want to continue with quadriplegic life, and they are unlucky enough to find themselves in similar circumstances; there's nothing in place , Like they could end up with kidney failure while waiting to see a urologist was there having serious problems and then have to be a quadriplegic on dialysis to continue, Bad spasms low platelets compromised paralyzed skin the fallback plan is CCAC and they are pathetic They don't show up they forgot to ship out supplies you see those sores on my heels guess what all they have is a basic band-aid from shoppers on them we could not get anything else, and I'm damn sure I'm not the only patient they treat like this it's just Sick. Don't even get me started about autonomic dysreflexia, if you're outside of the norm with that you're done there is nothing in place to address that you start getting A.D. on a regular basis for undiagnosable reasons you're screwed, the one other person I know of like that will spend the rest of his life in the hospital with ad AD induced seizures ( yeah you don't here about that often). I digress...

    These bedsores actually alone aren't even that bad I've had so much worse, it's just they're in horrible areas especially for my spasms, and there's multiple both heels,The top of both feet, One on the calve and there's small calluses on the bottom of both feet that are not looking good, not to mention the colour of the feet and the size of the toe. I need a good boot for if and when these heal up that I can wear for at least 10 hours, because I need protection for my feet and fact in no way can I have the boots taking off every four hours to give you a break like you're supposed to, I don't have people to do that I certainly can't do it myself and this is the result. Does anyone have any boots out there, basically magical boots that we can wear for long periods?
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  2. #2
    Those are nasty looking sores.

    What kind of shoes have you been wearing?

    Do you think the heel sores were caused by the shoes you've been wearing or were they caused by lying on you back in bed?

    Where are sores in pictures 1 and 5, on your shins, possibly?

    The "undiagnosed autonomic dysreflexia" you've experienced could be attributed to these sores, I suppose, and/or your bladder.

    Wish I had some useful thoughts for you. Hope you get a break and can get better and more consistent care for the sores.

    All the best,
    GJ

  3. #3
    James,

    In you 11/19/16 post about your toes, you were wearing PRAFO boots. Maybe it's the lighting, but picture 2 seems to show swelling in a pattern that would be consistent with the rigid PRAFO material.

    You'd also mentioned that a visiting doctor was coming to see your toes. Did he/she remove the boots and see all this?

    I'm hoping the SCI Nurses will see this and give you some advice soon.

  4. #4
    How did those sores get so bad?

  5. #5
    Quote Originally Posted by Jim View Post
    How did those sores get so bad?
    Well I have been having trouble with my spleen, so when I was having problems with my pancreas and also turned out my spleen was enlarged along with quite a few lymph nodes I also have a few associated spleen which are like miniatures splens that can be a result of , Trauma even from spasms compressing The abdomen on the spleen. Anyways like I said I'm in desperate need of seeing a haematologist because my platelets have been low and that this point it's chronic but my doctor kind of screwed off. And low platelets can be detrimental for wound healing, not to mention as a quadriplegic now very chronic my skin is extremely vulnerable with long-term low circulation and denervates skin.

    The other factors is not being able to do anything about this myself, and CC AC which is like the government nursing organization in Canada is useless and the nurses literally don't show up, and sometimes they do and do a half assed job and the bandage on my heel would come off and I would literally be aware every time I was spasming back-and-forth my open heel sore was being rubbed against my mattress dysreflexia and nerve pain was ridiculous,not to mention the bloody mess. The biggest thing is my spasticity in order to sit in my chair, and remain in it in the proper position somewhat I have to strap my leg and feet . I spasm constantly into the strap as it holds me down so obviously it has to be extremely tight or else it won't do its job, at night in order to remain straight and not have my legs throwing me around all where I have to wear leg braces so it's a friction issue as well A pressure issue. I literally spasm on a good day once every five minutes, average day once every two minutes, bad day literally once every 30 seconds and they can be big Full body legs arms hands etc. anyways if these sores get under control there obviously will be a reduction in my spasticity , I just got Botox in my bladder and knock on wood might be helping with me urinating all the time. It was quite funny we did 12 injections of course throughout the whole thing I went dysreflexia, normal blood pressure is 90/60, it went up to 198/107 so of course they were panicking but the thing is the dysreflexia was not particularly severe and for me I go through that on a regular basis literally every time I do bowel care, urinate, change catheter even just when I'm sitting in my chair for no apparent reason so I wouldn't let them stop and I think it's paying off I won't know the full effect till two weeks. I'm hoping to get off Vesicare at least. But apparently my blood pressure is so abnormal she wants me on the Botox and medication but I take two separate classes of meds for the bladder, vesicare has the most trouble and side effects

    But in regards to the sore again my mother and I who is my main character have been trying to manage it myself obviously she does the work I can not physically participate but she's not trained or equipped to do this. Anyways I went to see a room care specialist at the rehab center, they're going to be on CCAC's case I've been bedridden since Sunday and so far they have been all right. When I was at the specialist there's a total of six sores the other one on my calf I don't have a picture of, but they were debriding and packing /Bandaging them for three hours straight I shit you not. Now that the dead tissue is out we can have them bandaged in about half an hour, but holy crap was that crazy
    Last edited by JamesMcM; 12-02-2016 at 09:26 AM.

  6. #6
    Senior Member lynnifer's Avatar
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    Request a wound care nurse specifically EACH TIME or at least the SAME NURSE each time for continuity. See Dr Robyn Evans at Womens College on the 5th Floor in Toronto ... ask to be put on the GEKO healing device (e-stim) AFTER clearing for infection .. bone infection as it doesn't take long on the heel. The first picture is a swollen wound as well .. ask for coban. What are they treating it with? Old school but betadine works for me.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #7
    Quote Originally Posted by gjnl View Post
    Those are nasty looking sores.

    What kind of shoes have you been wearing?

    Do you think the heel sores were caused by the shoes you've been wearing or were they caused by lying on you back in bed?

    Where are sores in pictures 1 and 5, on your shins, possibly?

    The "undiagnosed autonomic dysreflexia" you've experienced could be attributed to these sores, I suppose, and/or your bladder.

    Wish I had some useful thoughts for you. Hope you get a break and can get better and more consistent care for the sores.

    All the best,
    GJ
    thank you. Yes I believe the heels are partially due to AFOs I was using, the biggest thing is I can't feel my feet, I have low platelets and obviously denervated skin like any quadriplegic but I never actually seen my feet and it's actually hard for my mom to get my feet into a position where I can see my heels because my spasms fight her so much and she's a small woman. So it's basically up to her and the nurses to see my feet and because they never show up it was primarily on her and basically yeah she screwed up she just never pulled the trigger. However she said that the shower day before these pictures were taken, two days basically the sores on the heels were completely different; she's blaming the low platelets for the completely sudden change in such a short amount of time. Actually sores one and five are on top of my feet, yeah that's the other scary thing all of this is on my feet, other than one deep sore on my right calf.

    at this point of the rehab centre is now involved and they are talking with CCAC, my mom wants to go to the mayor file complaints etc. I'm just not comfortable with whining to be completely uninvolved and ignorant public and expecting society to cater to my mistake, if I want to push anything publicly it's cure advocacy because that's what truly matters and that's it. But at the same time my mom is getting very stressed about this she wants to take action.

  8. #8
    Quote Originally Posted by 2drwhofans View Post
    James,

    In you 11/19/16 post about your toes, you were wearing PRAFO boots. Maybe it's the lighting, but picture 2 seems to show swelling in a pattern that would be consistent with the rigid PRAFO material.

    You'd also mentioned that a visiting doctor was coming to see your toes. Did he/she remove the boots and see all this?

    I'm hoping the SCI Nurses will see this and give you some advice soon.
    Yeah the toes looking pretty rough, and there is a lot of swelling good observation. I'm not entirely sure what type of boot I was using the AR fairly new replacement to A larger foam boot I was using called Heellift. Constant appointments to manage these things lmao but going to see us wrap it is next week, as for the doctor came in he basically gave me a ointment and didn't look at the sores mind you at that point they weren't that bad. The scariest thing is how quick these got to this point, again at this point were attributing to The abnormalities in my blood work

  9. #9
    Quote Originally Posted by lynnifer View Post
    Request a wound care nurse specifically EACH TIME or at least the SAME NURSE each time for continuity. See Dr Robyn Evans at Womens College on the 5th Floor in Toronto ... ask to be put on the GEKO healing device (e-stim) AFTER clearing for infection .. bone infection as it doesn't take long on the heel. The first picture is a swollen wound as well .. ask for coban. What are they treating it with? Old school but betadine works for me.
    Oh God they are using a couple different things, like I said above they literally spent three hours straight debriding and bandaging and yes each sore is different I believe three of them they're using just the old-school betadine and an aqua cell bandage,The other ones I believe they're using silver cell. we've tried to request the wound care nurse but downtown Toronto only has one and she's kind of a bitch not to mention useless when these sores were pretty minor and there was only one or two she just agreed with everything my mom suggested and brush this off. She flat out refuses to come every day, and even when she was supposed to come once a week she didn't show up. It's only been four days but so far them I have had the same nurse but I'm trying to not be picky just hoping to keep show up, so far so good I believe it's because the rehab centre is involved now and they're pressuring them. My doctor is gone and I don't see my new doctor until the 20th, there's a lot more I'am going to have to go over like I said and I would not be able to get a referral to the people you are proposing until then. But the wound care specialist at Lyndhurst are really good, when they were debriding everything and it took so long their shift was over and they kept going long after.

    I will definitely mention that device when I do see the doctor. Anyways guys thanks a lot for your information, as of right now it seems to just maintain until I can see a haematologist but at this point seems like I have things fairly under control now with the help of the rehab setting a fire under CCAC it's just a matter of you know being bedridden and waiting for help to arrive. I just couldn't believe how useless the nursing agencies are, and how sick you can get waiting for specialist that take months to get to, it sounds stupid but I really don't care about myself much anymore but for the people who do care and are trying to make something of this other than just donating to cure advocacy it's really wrong. I don't expect much of Canada's healthcare, but I expected more of their services for disabled people that literally can't even scratch their own nose, really unfortunate for them. Not right.

    It's funny I haven't had any invites/ opportunities to do anything for at least a month or two, and this week of all times I get invited to go out to the Drake Hotel this weekend, and I've been bedridden all week. I'm thinking of just bandaging up, wears an AFO's I can put jeans over and head out for a few hours then stay back in bed to make up for it, i digress see what happens. Anyways guys thanks again
    Last edited by JamesMcM; 12-02-2016 at 09:34 AM.

  10. #10
    Once you are healed up, standing in a frame really helps to control my spasms. Maintaing range of motion in my ankles is the key, especially because I had minor foot drop.

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