34 replies to this topic

[Gr8t3ful]

So I've had this sore for awhile now..
When I first got it, I had recently been discharged from the hospital, and I was only sleeping on my side. After awhile of going to the wound clinic every week, my doctor said that he wanted to try a wound vac. I was so against this.. he joked that the tubing was just like a big tail.. psh, I don't want a tail! So, that night I started sleeping on my belly. By the next appt he said how good it looked and that he wanted to see how this would go and so I escaped the wound vac. A month or so goes by, along with many different dressings, and the wound isn't getting better, but isn't getting worse. My doctor wanted to try this mini wound vac, but, turns out, it wouldn't work because there wasn't enough suction from something or another. That visit, my doctor pretty much said there's nothing more he can do, except for monitoring, until I'm ready for a wound vac. A couple weeks goes by, and I go to him on one of my visits asking about the vac cause I'm ready to get the sore gone. He says that I don't qualify for a wound vac anymore cause my wound is only .3 cm deep and I guess to qualify it needs to be 1.5? So we're using this gel honey stuff with mepilex.. we were using promogrante (I think this is what it's called) with tiel to absorb the drainage. I've been trying to get into bed whenever I have free time, but it's so hard with how busy I am. I'm a full-time student taking online classes, I have doctors appointments or appts with organizations I'm involved in like OVR, I have a benefit coming up and have been crazy busy with planning for that, and I have a 3 year old niece who follows me around like a puppy. I have to put up with hearing her cute little voice say "Adrin are you ready to get up yet?" Alll the time, it's sad and heartbreaking :-( but I'm off it whenever possible.
I do have trouble remembering to do pressure reliefs :-( I have a complete injury, so no sensation at all, which makes it soo hard to remember.
Any suggestions?

[RSUK]

Hi Gr8t3ful. Where's your sore? i had the wound vac on my heels to get them up to near surface. had it on for about 5 days and hated the man bag that i had to wear with it for the pump. made transfers interesting with all them pipes. i keep hearing that honey and mepilex is the way forward but my district nurses will not use it on my heels

i slao had a slight sore when in hosp underneath my thigh and staying off it for long periods of time worked a treat, hard in the real worl though i know.

[Millard]

Gr8t3ful, on 23 March 2011 - 03:54 AM, said:

So I've had this sore for awhile now..
When I first got it, I had recently been discharged from the hospital, and I was only sleeping on my side. After awhile of going to the wound clinic every week, my doctor said that he wanted to try a wound vac. I was so against this.. he joked that the tubing was just like a big tail.. psh, I don't want a tail! So, that night I started sleeping on my belly. By the next appt he said how good it looked and that he wanted to see how this would go and so I escaped the wound vac. A month or so goes by, along with many different dressings, and the wound isn't getting better, but isn't getting worse. My doctor wanted to try this mini wound vac, but, turns out, it wouldn't work because there wasn't enough suction from something or another. That visit, my doctor pretty much said there's nothing more he can do, except for monitoring, until I'm ready for a wound vac. A couple weeks goes by, and I go to him on one of my visits asking about the vac cause I'm ready to get the sore gone. He says that I don't qualify for a wound vac anymore cause my wound is only .3 cm deep and I guess to qualify it needs to be 1.5? So we're using this gel honey stuff with mepilex.. we were using promogrante (I think this is what it's called) with tiel to absorb the drainage. I've been trying to get into bed whenever I have free time, but it's so hard with how busy I am. I'm a full-time student taking online classes, I have doctors appointments or appts with organizations I'm involved in like OVR, I have a benefit coming up and have been crazy busy with planning for that, and I have a 3 year old niece who follows me around like a puppy. I have to put up with hearing her cute little voice say "Adrin are you ready to get up yet?" Alll the time, it's sad and heartbreaking :-( but I'm off it whenever possible.
I do have trouble remembering to do pressure reliefs :-( I have a complete injury, so no sensation at all, which makes it soo hard to remember.
Any suggestions?

Hello Adrin,

There is a product that is excellent for healing pressure sores. You can read about it at www.oculusis.com I have used it on several pressure ulcers and it does an outstanding job. Your doctor can prescribe it for you and your insurance will pay.

Good luck.

[Gr8t3ful]

My sore is on my coccyx.. my mom, who changes my dressing, said it's starting to look healthier, after using the honey and getting off my butt at least twice a day for 2+ hours, for the past two days. Hopefully it just keeps getting better.

[Tetracyclone]

Adrin,

Get a kitchen timer you can wear or keep in your pocket. Set it on vibrate if you don't want to bother others. THEN DO YOUR PRESSURE RELEASE. Not doing is denial of reality. never practice denial. Very bad habit. i know.

[airart1]

i got just a 30 buck ironman watch at walmart and set the timer for continuous and attached to my cushion, u can set it to go off at any interval, works great and lasts forever or u can actually use the watch, i don't use it as a watch because i got a kinetic watch that i have to wear to keep it charged and not ruin the capacitors is the only reason i dont.......

[Simba]

Sound advice. Prevention is the best approach with pressure sores. Relieving the pressure at regular intervals is essential...if you can lift yourself a tiny bit up at regular intervals. My husband also changes positions using spacicity in his legs during night time when he sleeps to avoid getting pressure sores - he is a qud tho so don't know if it's necessary for para's?

Hope recovery goes well that vacuum thing does not sound pleasant!

[airart1]

its necessary for anyone in a chair to do reliefs at least every 15 minutes............

[Apparelyzed]

I know it's a pain, but it's amazing how a week in bed can help a pressure sore heal.

The best way to heal a pressure sore, unfortunately, is to stay off it.

I'm currently healing a stage 1 pressure sore, which is at the induration stage, and have been in bed for 10 days now. The sore is nearly healed.

If I had not endured the bordom of bedrest, it would be very easy for the stage 1 sore to break down into a more serious stage.

The skin is very resilient, and as a result, the damage to tissue below it can go unnoticed, until the visible signs show, by which time, the damage has been done.

Try to stay off it for longer, get your wheelchair cusion checked that it's suitable for your needs, and don't be tempted to go on your back when in bed!

Good luck

Simon

[airart1]

if she doesn't get off of it and it gets out of control, it will change her life forever, and regret will be part of the rest of her life........

[Shan]

All I know is don't stop using that Medihoney! That product is the best! I had a wound on my right ankle bone and I had it for over a year. I started using that honey and it healed it no time! The nuclear bones scan that I had showed an infection but the honey help draw out infection. Just a little info about honey, the egyptians used honey for their wounds and also our fore father when they had wounds from battling.

[Gr8t3ful]

airart1, on 25 March 2011 - 05:40 AM, said:

its necessary for anyone in a chair to do reliefs at least every 15 minutes............

I know this. I've only been in my chair for a year in April... It's hard to remember, but I'm sure I'll catch on.....

airart1, on 25 March 2011 - 12:29 PM, said:

if she doesn't get off of it and it gets out of control, it will change her life forever, and regret will be part of the rest of her life........

I did say that it's not getting worse.... It's been at a standstill for awhile now. I think the amount of time that I am off of it, is working in my favor, not letting it get worse. Regret is not in my life. All the experiences I face make me stronger. I don't regret things, I learn from them.


Thanks for all the replies!!

The problem with me getting in bed more is that I'm sooooo busy. I have appts all the time, doctors, couselors from OVR and TRCIL, research study appts, appts for school..

I'm still in highschool. I take online classes. My accident interrupted me, I got behind. I need need need to finish highschool asap.. I'll be 20 in May, my teacher has really been pushing me to work, work, work, so I'm not in highschool for "forever".

I'm also haveing a benefit dinner/concert to help raise money for me a new bed. Planning, planning, planning! It's going to be a great benefit (I hope), but there's a lot of planning that needs to be done in order for it to be a great success. My mom is mainly in charge, but I definitely have my hands in everything as well.

And in order to shower, I have to go to my grandparents house because I can't fit into my bathroom. So showering isn't as quick as it could be.. It's about a 40 minute drive to my grans, plus shower time, time it takes to control the mop on top of my head, visit time, the trip back home, it's 3-4 hour trip..

Ahh I'm trying soo hard, I am. I want it to get better more than anyone else in the entire world! haha I hate having all these sores all over my body.. It's cuts my self-confidence like in half, maybe more..

I'm gonna set a bunch of alarms on my phone to remind me to do my pressure reliefs. I'm still pretty new to all of this, bare with me.

[airart1]

i didn't by no means try to demean u in any way, i was trying to get thru the necessity of getting it healed so u can go about as normal a life as u can, its a shame to start your life in a chair with a sore, and oh how it does make it difficult to live with one, infection-septis can do so much damage to your body and these things are so life threatening that u really need to focus as much time as possible to get this sore out of your life and get well, because it is so easy to get out of control and then u can be in bed or surgeries that can be years in getting under control, literally years, maybe in the tens of years....i wish u the best, i would say that u really need to look at the cushion u are using also, this maybe part or even most of the problem to start off with, i wish u the best......

[Gr8t3ful]

airart1, on 26 March 2011 - 08:13 PM, said:

i didn't by no means try to demean u in any way, i was trying to get thru the necessity of getting it healed so u can go about as normal a life as u can, its a shame to start your life in a chair with a sore, and oh how it does make it difficult to live with one, infection-septis can do so much damage to your body and these things are so life threatening that u really need to focus as much time as possible to get this sore out of your life and get well, because it is so easy to get out of control and then u can be in bed or surgeries that can be years in getting under control, literally years, maybe in the tens of years....i wish u the best, i would say that u really need to look at the cushion u are using also, this maybe part or even most of the problem to start off with, i wish u the best......

I just felt like you were being.. rude? I can't think of an appropriate word. And I'm not all trying to be rude myself, I'm sorry if I come as so. I might be blonde, but I'm not dumb :-P I know I have to get off of it for it to heal.. And I know the necessity of getting it healed so I can go about my life, those are like common sense things to me.

Maybe I should have clarified certain things better:
My wound doctor alwayss says how clean it is; I have never been anywhere close to infection, my wound is kept very clean, props to my mom. Not saying that it couldn't still happen, but I just find it unlikely.

I guess what I was looking for was any different kind of dressings people have used that have worked better than others.. or other techniques that could help..

I did go to this Centers for Assistive Technology, where they looked at my cushion. I thought more of a gel cushion would be better for me, but the lady said I was on a good cushion.. It's a Varilite Evolution.. just air-based I guess.

I think my bed has a lot to do with it too.. It's just a crappy hospital bed, with this gel pad on top. I sleep on my belly every night, but the time I'm in bed leading up until I go to sleep, I'm on my butt. It's not for too long.. and I change my position around so I'm not in the same spot the whole time, and I'm usually just getting off of my belly, so this gives my arms/shoulders a break..

Again, thanks for the advice I know I need to pressure relieve, pressure relieve, pressure relieve!!
I hope it heals quickly.. blah.

[airart1]

i was just stating facts......... this comes from experience..........

Edited by airart1, 04 April 2011 - 12:47 AM.

[LaurenP]

Please, Know that we all wish you the best..GR...just please understand that we who have been through it know what is needed to minumize the chance of problems developing.... your overall health has to be your first concern...Heed all signs of infection including the fact that healing isn't coming easily...if need be you must curtail your activities...otherwise the results could be irrelevant.

[mellowgator]

airart1, on 25 March 2011 - 05:40 AM, said:

its necessary for anyone in a chair to do reliefs at least every 15 minutes............

that seems pretty excessive. i was taught in rehab to do pressure reliefs evey 30 minutes. i haven't had a breakdown yet and it's been 25 years.

[a la carte]

Gr8t3ful, on 03 April 2011 - 04:27 PM, said:

the lady said I was on a good cushion.. It's a Varilite Evolution.. just air-based I guess.

I've been using the same cushion since 2005 - I think they're fantastic compared to the different types of Rohos and gel cushions I tried for 13 years before that.

They are a sort of hybrid technology gleaned from their foam and air camping mattresses. It was a natural progression to apply the technology to wheelchair cushions. And there are different foam densities built in, as well. They've done their homework!

BUT, you should still get someone to do a pressure map. With my current chair, it showed that a foam wedge across the front distributed some of the pressure off my "critical area" to my thighs. Even better!

Good luck!

[kiwiquad]

"Again, thanks for the advice I know I need to pressure relieve, pressure relieve, pressure relieve!!
I hope it heals quickly.. blah."

You're just not getting it...
Stay off it, or you will regard it as a regret if you don'f take the good advise from those of us who have 'been there, done that'!
Pressure relief is irrelevant until it is gone, then the 'getting up for short stints process' begins. You have a lot to learn & are ignoring the best advise which again is to stay off it.
Read read & read more from this forum, & grow up, fast.

[airart1]

i've been told every 15 minutes for 21 years, by every doctor i've ever seen, assume every doctor has his own opinions......

[Gr8t3ful]

I can't just stay off of it all the time!! Ahh!! I have so much shit going on in my life right now, like you guys don't understand. I shouldn't have even have posted anything about this!

I am being pulled in so many damn directions and I am so ready to say f*** everything!

My doctors say this, my mom says that, my ovr counselor says this, my teachers say that.

Kiwiquad, don't tell me to grow up, fast. You do not know me. I am so mature for my age it's ridiculous. I did grow up thanks, I had to when my dad committed suicide and my mom started to go to the bar every night, bringing home random guys. I was 12. And I had to take care of myself. I grew up then, when I had no one to take care of me, but myself.

[greybeard]

In your list of people who are pulling you "in so many damn directions", you missed out all the people from this site who tried to tell you (from their own experience) how to cure a pressure sore, and the consequences of failing to take the necessary action.

We all understand that you are driving yourself hard to achieve your goals, but it is clear that by ignoring those who really know what it's like to live with a sore that's got worse, you may be doing the one thing that could stop you reaching your goals PERMANENTLY. i.e. your sore could end up killing you.

Please take the advice that's being offered. It really is in your own best interests.

[mellowgator]

i agree that grateful needs to stay off the wound until it's healed. simon just spent 10 days in bed healing a stage one wound. these things can be stubborn and can get bad quickly. please be careful with your skin. i've heard of people who use a roho actually tying off cells so there isn't any pressure on the wound.

btw, the weight shift interval is only for when your skin is healthy.

[Edinburgh Colin]

I am also going to tell you something you don't want to hear.

You have to keep all pressure off it no mater what until it is all completely healed up

I completely agree with Grey Beard. If it does not heal now you could be in for a lot more trouble than you could imagine, I will e-mail you some pictures of how bad it can get and then you may realize what we are talking about (if I can, do you have an e-mail address on your contact page? if not PM me one and I'll send them to you). I'm not posting them here as they are not very pretty and it's not fair to make others look at them.

This could really kill you or ruin your life for good (which may be a lot shorter if you don't get healed fast. Surely you can get some of your studies to do at home considering, also home visits from the medics, don't go for the 5 hour trek for a sower because you are putting pressure on it again, have a bed bath, wash with wipes or wet towels. Do what ever you can to make things come to you instead of putting yourself at risk.

We are all being like this to help you and I hope you realize it.

Good luck,

EC.

Edit.

Just looked and you cannot send pictures to your e-mail shown on you profile, so if you reply to me then I can send it by e-mail outside of the site. It's a good idea to keep inappropriate e-mail form being sent I guess.

Edited by Edinburgh Colin, 04 April 2011 - 05:36 PM.

[Gr8t3ful]

It doesn't even matter. All my hard work and persistance with my wound care center paid off, I got into the hyperbaric oxygen chambers. Ovr is paying for it, and I can't wait.

I understand that I need to stay off of it for it to heal.

[Edinburgh Colin]

Gr8t3ful, on 04 April 2011 - 06:19 PM, said:

It doesn't even matter. All my hard work and persistance with my wound care center paid off, I got into the hyperbaric oxygen chambers. Ovr is paying for it, and I can't wait.

I understand that I need to stay off of it for it to heal.

OK good news I hope it works well for you and that this is the last you sore you need to deal with.

[qbounce]

Gr8t3ful,
I had a pressure sore on the first year of my SCI as well. I got it in the hospital, probably while they had me stabilized just after my injury. I know what it's like to have so much going on directly after, and the worry of trying to heal a level 4 pressure sore on top of everything.

I was told by my in home therapists that I could no longer do any therapy until my sore was healed. At the time, I was having difficulty doing anything on my own, so I felt it was imperative that I continue my therapy for the good of my body and my sole. So, I got the okay from my wound doctor to go to outpatient therapy at the hospital, which was ten times more therapeutic than the in home therapy I'd been receiving earlier.

While my mind and body were getting the right kind of treatment, I actually felt like my life was moving forward in the right direction. Meanwhile, during my first year post SCI, the only thing that wasn't properly healing was the pressure sore on my coccyx. I made the executive decision after that year passed to eventually have a flap surgery done on it. I haven't had any issues with it since.

I've heard others mention that the wound vac can even be used while you're up in the chair. I never had the opportunity to use the vac, but my understanding is that when properly used, it really does work wonders. Good luck to you.

[Gr8t3ful]

I really do appreciate all the responses, I do. I know it may not seem as so.

The time I like freaked out, I was having a terrrrible day as it is, and then I came here for support and I just felt like I was being attacked by everyone that responded saying I need to get off of it, or I'm goind to regret it forever and it's going to kill me and my life. I just didn't expect that, and because I was having suchh a bad day anyways, I hope you can see how I felt this way.

I do know that the pressure needs to be off of it for it to heal, that was one thing that was definitly reiterated to me while I was in rehab. I had a bad pressure sore that I got from a dirty hospital I was in prior to going to a different hospital for rehab. It was from my catheter tube, my nurses didn't turn me like ever, so I had one a couple inches long on the back of my leg/cheek..

Maybe you guys could just be a little softer when you reply to things like this.. it's easy to hurt people's feelings with such a blunt approach.. I know that's not what's intended, but it's easy to mistake your good intentions when you feel attacked.

After this one, it will not happen again! I think what really got me was not sleeping on my belly more to begin with. I never slept on my belly. I only ever slept in the same position, on my left side. It's all I knew I guess, and I thought that sleeping on my side took all the pressure off of my butt, but now I don't think it does. As soon as I started to sleep on my belly there was improvement like immediately. Something I will pass on if I'm ever there for someone just starting their new lives as a paraplegic

Edited by Gr8t3ful, 07 April 2011 - 01:04 AM.

[Tetracyclone]

Gr83ful.

You are surprisingly mature and diplomatic, and young at that. I foresee gr8 things in your future and am very glad you came here. I hope you stick around as I think you have a lot to give.

[LaurenP]

Gr8t3ful, on 07 April 2011 - 12:55 AM, said:

I really do appreciate all the responses, I do. I know it may not seem as so.

The time I like freaked out, I was having a terrrrible day as it is, and then I came here for support and I just felt like I was being attacked by everyone that responded saying I need to get off of it, or I'm goind to regret it forever and it's going to kill me and my life. I just didn't expect that, and because I was having suchh a bad day anyways, I hope you can see how I felt this way.

I do know that the pressure needs to be off of it for it to heal, that was one thing that was definitly reiterated to me while I was in rehab. I had a bad pressure sore that I got from a dirty hospital I was in prior to going to a different hospital for rehab. It was from my catheter tube, my nurses didn't turn me like ever, so I had one a couple inches long on the back of my leg/cheek..

Maybe you guys could just be a little softer when you reply to things like this.. it's easy to hurt people's feelings with such a blunt approach.. I know that's not what's intended, but it's easy to mistake your good intentions when you feel attacked.

After this one, it will not happen again! I think what really got me was not sleeping on my belly more to begin with. I never slept on my belly. I only ever slept in the same position, on my left side. It's all I knew I guess, and I thought that sleeping on my side took all the pressure off of my butt, but now I don't think it does. As soon as I started to sleep on my belly there was improvement like immediately. Something I will pass on if I'm ever there for someone just starting their new lives as a paraplegic

I just read your post and thought to myself "wow" how maturely you handled the comments to you. Some obviously were a bit too straight forward, my opinion, but all were meant to help and advise you to the seriousness of your pressure sore. Everyone wants the best for you. I know you are very young but I'm sure that all of us would love to see you continue to post and keep us updated as to how you are doing.