20 replies to this topic

[Zammo]

Crap! Noticed this morning that I've developed a small pressure sore on my ass/arse. Right on the boney part too.

I think I did it a couple of days ago, but I can't be sure when or how it happened. I'm not that careful with pressure relief, but until now I've been OK with my bum (apart from that time I sat on a button all day).

I know I'll be told to keep completely off it, but I'm afraid that just isn't realistic for me. I've got a kid to look after and a job to go to. I'm just going to have to try and keep off of it as much as possible and hope that it heals up quickly.

I'm not looking for any answers on here folks, but I'm so pissed off just wanted to vent somewhere. Thanks for 'listening'.

[twisted_ophelia]

Honestly, do what the doctors tell you. Skin issues can get really bad if you let them and then it can put you on weeks, or months, of total bed rest. Do your best to stay off it as much as you can.

Edited by twisted_ophelia, 29 April 2009 - 03:53 PM.

[Wheelz 16]

Zammo, on Apr 29 2009, 11:52 AM, said:

Crap! Noticed this morning that I've developed a small pressure sore on my ass/arse. Right on the boney part too.

I think I did it a couple of days ago, but I can't be sure when or how it happened. I'm not that careful with pressure relief, but until now I've been OK with my bum (apart from that time I sat on a button all day).

I know I'll be told to keep completely off it, but I'm afraid that just isn't realistic for me. I've got a kid to look after and a job to go to. I'm just going to have to try and keep off of it as much as possible and hope that it heals up quickly.

I'm not looking for any answers on here folks, but I'm so pissed off just wanted to vent somewhere. Thanks for 'listening'.

Get a hgh profile Roho Quadtro cushion if you can acquire one.

[twisted_ophelia]

Wheelz 16, on Apr 29 2009, 11:31 AM, said:

Zammo, on Apr 29 2009, 11:52 AM, said:

Crap! Noticed this morning that I've developed a small pressure sore on my ass/arse. Right on the boney part too.

I think I did it a couple of days ago, but I can't be sure when or how it happened. I'm not that careful with pressure relief, but until now I've been OK with my bum (apart from that time I sat on a button all day).

I know I'll be told to keep completely off it, but I'm afraid that just isn't realistic for me. I've got a kid to look after and a job to go to. I'm just going to have to try and keep off of it as much as possible and hope that it heals up quickly.

I'm not looking for any answers on here folks, but I'm so pissed off just wanted to vent somewhere. Thanks for 'listening'.

Get a hgh profile Roho Quadtro cushion if you can acquire one.

I've known of more than one person who's had horrific pressure sore issues even while sitting on a Roho Quattro. Ultimately, whatever cushion you have, it doesn't make a difference if you are not doing weight shifts properly, especially when you are at a higher risk from a bony bum.

Edited by twisted_ophelia, 29 April 2009 - 03:52 PM.

[edlee]

I've mentioned this before, about the subject of "staying off of it",,, that is,, I wish I could. I've found that the second best thing,, and obviously a lap or more back,, is to use the roho.

Any kind will do, but the tall one would, I think, be a better option. But not just using it, but modifying it slightly.

What I have done, successfully, is to locate the cells directly below the problem spot, then defate them by pushing out the air, and keep them deflated with the use of rubber bands or tape. You will only need to do this to one or two cells to get what you want,,, may not be perfect,,, but better than a sharp stick in the eye...

This removes the possibility of pressure without the need to lie in bed, or in my case,, to remember to do my weight shifts when I should.

Hope this helps.
ed

[Illinois Boy]

edlee, on Apr 29 2009, 11:25 AM, said:

I've mentioned this before, about the subject of "staying off of it",,, that is,, I wish I could. I've found that the second best thing,, and obviously a lap or more back,, is to use the roho.

Any kind will do, but the tall one would, I think, be a better option. But not just using it, but modifying it slightly.

What I have done, successfully, is to locate the cells directly below the problem spot, then defate them by pushing out the air, and keep them deflated with the use of rubber bands or tape. You will only need to do this to one or two cells to get what you want,,, may not be perfect,,, but better than a sharp stick in the eye...

This removes the possibility of pressure without the need to lie in bed, or in my case,, to remember to do my weight shifts when I should.

Hope this helps.
ed

I agree totally.........

Jim

[a la carte]

Illinois Boy, on Apr 29 2009, 09:55 AM, said:

edlee, on Apr 29 2009, 11:25 AM, said:

I've mentioned this before, about the subject of "staying off of it",,, that is,, I wish I could. I've found that the second best thing,, and obviously a lap or more back,, is to use the roho.

Any kind will do, but the tall one would, I think, be a better option. But not just using it, but modifying it slightly.

What I have done, successfully, is to locate the cells directly below the problem spot, then defate them by pushing out the air, and keep them deflated with the use of rubber bands or tape. You will only need to do this to one or two cells to get what you want,,, may not be perfect,,, but better than a sharp stick in the eye...

This removes the possibility of pressure without the need to lie in bed, or in my case,, to remember to do my weight shifts when I should.

Hope this helps.
ed

I agree totally.........

Jim

I had a sore and got a Varilite cushion immediately before a 15 hour flight to South Africa... I swear that when I got back from the trip, the sore was almost completely healed. And I was "on my butt" 15-18 hours per day.

The Varilite Evolution does what you guys are recommending with the Roho (which I have had two of, including the high one, that didn't work at all for me). ONLY BETTER.

The Evolution is a foam (with partial cutout in the ischial area) cushion that combines adjustable air pressure, with a relief valve that is very user friendly. NO PUMP.

When I got back from the trip, I went in and they did some pressure mapping. I found that it even looked better with a foam wedge placed in the front part of the cushion, under my thighs, to take even more weight off my butt... (I have an almost flat seat, with almost no "dump.")

Just can't recommend this cushion enough. I've been using it since that trip in 2004 and have not had a single sore ever since. And I've dealt with severe sores since 1982.

Contact Cascade Designs in Seattle, WA. http://www.varilite....l.aspx?prodID=3 You'll be glad you did.

Edited by a la carte, 30 April 2009 - 01:41 AM.

[Zammo]

Saw the nurse today, picked up some dressings. Also agreed with work, to work from home for a bit. Hopefully I can carry on working from bed/sofa . Got a long weekend coming up, so I'm hoping I'll see some improvement.

[Zammo]

OK so the pressure has more or less healed up now. I'm pretty pleased about that obviously. Taken about 1 month altogether.

However

I've been neglecting my other side and that has developed two sores over the last few days. Groan!!
One is pretty small is not much more than a simple graze. The second is larger but to be honest doesn't look too deep. Once again I'm feeling pretty hacked off about it, but hopefully they'll heal as easily as the other one did. This time though I've got to make sure I look after both sides of my arse!

[a la carte]

Awesome, Z!

I've been working from home since 2003 and find it MUCH healthier and better in so many ways.

Fortunately, I get to travel and communicate with people a lot, so it's not lonely isolation.

[Zammo]

Yeah I work from home from time to time. The company I work for are very relaxed and I can basically call up and let them know that I'm not heading in that day. As long as my calendar is up to date so they know where I am they don't mind too much. It's much easier taking breaks at home. I can spread out on the sofa, can't really do that at work.

But my remote access has been really slow lately, and combined with some graphics work I was doing it was making it really hard to be genuinely productive from home. I really needed to be at my desk, so I'm back in the office, taking as much pressure relief as I can.

[Ratticis]

When I was in ICU (Ignored care unit) I developed a massive crater on my back side. At one point it was so bad that you could literally see bone through a thin layer of flesh. Took over a year to heal completly. And i still have pressure sores on my heels (nearly healed up now) from the same time. Needless to say, we are filing a lawsuit against the hospital.

[Aka]

Zammo, on Apr 30 2009, 01:13 PM, said:

Saw the nurse today, picked up some dressings. Also agreed with work, to work from home for a bit. Hopefully I can carry on working from bed/sofa . Got a long weekend coming up, so I'm hoping I'll see some improvement.

Oky, so I am not alone in this business of presure sores.
I equaly have presure sores, and I am about to start work which will requare me sitting for about 7 to 8hrs a day and 6day a week.
I am wondering the best way for my presure sore as I rely need to work for my living and for the eduction of my baby brother.

Any greaty ways of handly work/long hours sitting and presure sore!!!!!!!!!

[T0P]

Aka, on Jul 1 2009, 10:43 AM, said:

Oky, so I am not alone in this business of presure sores.
I equaly have presure sores, and I am about to start work which will requare me sitting for about 7 to 8hrs a day and 6day a week.
I am wondering the best way for my presure sore as I rely need to work for my living and for the eduction of my baby brother.

Any greaty ways of handly work/long hours sitting and presure sore!!!!!!!!!

I used to get pressure sores all the time... Not any more
I now sit in my chair for many hours at a time and very rarely do I actually do a weight shift.
I use what is called the "Ride" cushion.
http://www.ridedesig...m/cushions.html

No more sweaty butts, no more sores, no more stinky cushions.

I use a VA SCI hospital and this is what most everyone is switching to. I used to use the gel cushion, then the honeycomb cushion, then a thin roho and then a thick roho. Since I have changed over to this Ride cushion I have never even so much as had a red spot on my ish or tail bone.
When they mapped me on this cushion there was Zero (0) hot spots.

You will need a trained specialist to set it up for you, you can't just get one and use it without first testing for hot spots and then adjusting it to fit your bum.

You do sit higher in this cushion so you will not be able to roll under a standard desk, you will need to raise the desk about 2-4 inches.

I made the mistake of just letting my legs hang off the end of my chair so I could fit under the desk... Not a good idea with this cushion. I then developed a sore on my thigh... it was minor and I caught it soon enough.

Hope this helps!
T.

[Aka]

hey T, the cushon seem to be great but the y is no supplier in my country how can I get access.

[T0P]

Aka, on Jul 2 2009, 05:36 AM, said:

hey T, the cushon seem to be great but the y is no supplier in my country how can I get access.

I noticed after I had posted where you were located. It appears that they currently have suppliers in the USA and Canada. I am located in the USA and use the Veteran Administration Hospital (VA Hospital) for all my SCI needs and this is how I was able to get mine.

I did a bit of research on the Ride site and best I can say is maybe contact them:
http://www.ridedesig...om/contact.html

You can use the link I posted and fill in your information and see what they can tell you.
If they get your chair dimensions and necessary information they may be able to give you detailed instructions on how to set it up and how to check for hot spots. They may even be able to work with the SCI unit in your country on how to set it up and check for pressure spots. You will more than likely need assistance in doing the initial check.

I was lucky in that for my chair I did not need any adjustment on mine. they put this little pad between the cushion and the cover, they then lifted me up and set me down in the chair. (They do this because they do not want a false reading if you slide into the seat). There was no dents in the little pad so they then mapped me using the pad that shows on a computer screen where the hot spots are and there were no hot spots (Hot spots meaning pressure points).

Try that link and contact them, see what they say.

I hope you can work it out with them because the cushion is great.. like I stated in my previous post... most everyone at the VA that I know who are in a wheelchair is changing over to the Ride cushion and it is what the VA now recommends we use.

I wish you the Best!
T.

[Aka]

T0P, on Jul 3 2009, 12:24 AM, said:

Aka, on Jul 2 2009, 05:36 AM, said:

hey T, the cushon seem to be great but the y is no supplier in my country how can I get access.

I noticed after I had posted where you were located. It appears that they currently have suppliers in the USA and Canada. I am located in the USA and use the Veteran Administration Hospital (VA Hospital) for all my SCI needs and this is how I was able to get mine.

I did a bit of research on the Ride site and best I can say is maybe contact them:
http://www.ridedesig...om/contact.html

You can use the link I posted and fill in your information and see what they can tell you.
If they get your chair dimensions and necessary information they may be able to give you detailed instructions on how to set it up and how to check for hot spots. They may even be able to work with the SCI unit in your country on how to set it up and check for pressure spots. You will more than likely need assistance in doing the initial check.

I was lucky in that for my chair I did not need any adjustment on mine. they put this little pad between the cushion and the cover, they then lifted me up and set me down in the chair. (They do this because they do not want a false reading if you slide into the seat). There was no dents in the little pad so they then mapped me using the pad that shows on a computer screen where the hot spots are and there were no hot spots (Hot spots meaning pressure points).

Try that link and contact them, see what they say.

I hope you can work it out with them because the cushion is great.. like I stated in my previous post... most everyone at the VA that I know who are in a wheelchair is changing over to the Ride cushion and it is what the VA now recommends we use.

I wish you the Best!
T.

I contacted them and this what there had to say "Hello, Unfortunately, Ride Designs ships only to the US and Canada at this time. I will keep your information on hand should things change. Sandy Sandy Huntley Customer Care "
I guess I not lucky, anyway I am always hoping for the best. Thankyou Top.

[T0P]

I'm sorry to hear that Aka.
I was hoping that they would work something out for you.

Keep weight shifting..!! That's the most important thing we can do.

I know we sometimes get carried away and forget, for me it's especially so when I get on the computer.
Have you tried a high profile roho?
Like Wheelz says:
"Get a high profile Roho Quadtro cushion if you can acquire one." and give it a try.

edlee gives some good advice here as well:

edlee, on Apr 29 2009, 11:25 AM, said:

I've mentioned this before, about the subject of "staying off of it",,, that is,, I wish I could. I've found that the second best thing,, and obviously a lap or more back,, is to use the roho.

Any kind will do, but the tall one would, I think, be a better option. But not just using it, but modifying it slightly.

What I have done, successfully, is to locate the cells directly below the problem spot, then defate them by pushing out the air, and keep them deflated with the use of rubber bands or tape. You will only need to do this to one or two cells to get what you want,,, may not be perfect,,, but better than a sharp stick in the eye...

This removes the possibility of pressure without the need to lie in bed, or in my case,, to remember to do my weight shifts when I should.

Hope this helps.
ed

Same advice a friend of mine who has been in the chair since 1983 has given to me in the past. He swears by the roho. The key to the roho is proper inflation. If it is over or under inflated it is going to give you sores too.

In my van I use a low profile roho on the seat when I drive and so far have not had any problems.

I hope and pray that you will be able to work something out that works best for you. I wish you the best my friend. I know what pressure sores are like as I have been laid up with them before. Not to mention that if un-cared for can be very dangerous...

If we do get a sore... we need to Stay off it till it is healed.

T.

[Nginoe]

I'm friends with a wonderful woman who has been a C7 para for over 40 years now. She wrote an article in New Mobility magazine in 2005 about her journey with pressure sores. She works hard now to help people who are dealing with pressure sores and chronic wounds and letting them know what worked for her.

http://www.newmobili.....20Cord Injury

Admin Note: This has been edited due to concerns by members about advertising/spam.

[Zammo]

Bump!

Not really updated this thread for ages because my pressures sores got really bad and I was quite down about it.

I even started giving this entire forum a wide berth because if I contemplated coming here it immediately made me think about my sores and put me in a bad mood.

Anyway, I started this thread in April 2009. So now in July 2010 my pressure sores are almost healed. That's 15 months!
Though to be fair, most of that time my sores where not healing but were actually getting worse. In fact so bad that at one point the bone in my arse was almost exposed.

Managed a break through though when I was able to get a roho cushion. This seemed to make a massive difference. Also went to using Promogran Prisma to dress the wounds too. This all happened around March, so the last three months or so have seen a huge turn around for me.

In all that time I continued with my usual daily life (work, kids, etc). Just taking an extended period of time off to heal wasn't going to work. Thankfully (in the end) I managed to heal around my regular life.

Anyway, off to Centre Parcs next week, and trip to Amsterdam with they boys later in the year.

[airart1]

roho will actually make u a cushion anyway u want it, i got 3 in cells where i've had my surgeries and 4 in cells everywhere else and by keeping the 4 in cells a little over inflated over the 3 in cells i get absolutly no pressure where my surgeries were, so far so good, i dont get any red spots, i do use a cheap ironman timex and set the timer to beep at me every 15 minutes so i know to do a pressure relief........makes a big difference also, roho has a form on there site that lets u color code what cells u want to do what with, i just made my own with software and keep it on file and VA orders them anyway i want them, plus pressure map it every year to make sure nothing has changed......