Re: [QUAD-L] suprapubic and sling
I was up to oxybutin 3 times a day and no good. I was intermit cathing when I was first paralyzed but because my bladder wasn't holding any fluid and the drugs weren't working, I went to an indwelling. The sling can be artificial or they use your own tissue and put a sling under your bladder somehow. I did read on it but not good at explaining it. What I didn't find was information on how it does with people paralyzed. All the info I found was on stress incontinence so why I am turning to you all. I have a choice of a sling or them closing off my urethra and not quite sure which way to go. I'm just really paranoid about leaking and also paranoid about them closing off my urethra although i would rather that than be wet. Stacy From: LJT To: Quad-list@eskimo.com; Stacy Harim Sent: Mon, February 1, 2010 9:26:53 PM Subject: Re: [QUAD-L] suprapubic and sling Stacy, I want to be sure I understand your situation correctly. Do you currently use an indwelling catheter and want to switch to a super pubic catheter? And what is this sling that you speak of? I have a super pubic catheter, and while I'm pretty new to the game (to being a quad) I'd like to help shed some light if I can. I've been very happy with mine. Also when they talk about your urethra are they talking about closing it off completely to eliminate its leaking entirely? Personally, and this is my own deal, I think I'd be a little scared to have them close it off entirely. I take detrol LA to control bladder spasms and therefore leaking. Please contact me if you have any questions. But again like I say I'm pretty new to this, so I don't know how much help I can be. Lucinda C-4,5 complete July 31, '05 Mpls., MN --- On Mon, 2/1/10, Stacy Harim wrote: >From: Stacy Harim >Subject: Re: [QUAD-L] suprapubic and sling >To: wheelch...@aol.com, Quad-list@eskimo.com >Date: Monday, February 1, 2010, 4:07 PM > > >We increased the size but > can't only do that so many times. I just would like to be informed with info > from people that live with it day to day than just from a doctor. I trust > him but would like to know if anyone with a sling and a flaccid bladder have > any troubles with leaking or whatever may be a problem. I feel it's > important to be informed. > >Stacy > > > > From: "wheelch...@aol.com" >To: imwheelin1...@yahoo.com; > Quad-list@eskimo.com >Sent: Mon, February 1, 2010 7:28:28 AM >Subject: Re: [QUAD-L] suprapubic and sling > >Increasing the size of the cath might be the answer. Of course, there >could be a half dozen other tangible reasons too. You and your doctor have >access to your medical records, we don't. Offering suggestions without >this valuable information is too risky at best. >It can be even more critical when you don't trust your medical >doctor. >Best Wishes > >In a message dated 1/31/2010 10:27:04 P.M. Central Standard Time, >imwheelin1...@yahoo.com writes: >Hey all, >> >>I've been away for a while but need some advice. >> Not that I don't trust my doctor's advice but also would like to get the >> facts >> from people that live with it day to day. >> >>I've been having issues with >> leaking around my cath and instead of continuing to go up sizes, I've >> decided >> to go with the supra pubic until I drop some weight in my belly and get the >> stoma redone so I can cath through my abdomen. >> >>Anyhow here is >> the deal. My bladder doesn't hold urine at all and the doctor suggested >> a sling but I am really worried it won't work and then I'm back in surgery >> to >> get my urethra tied off. What if any advice do you all have that have a >> supra pubic and how did you handle what to do about your urethra so it >> wouldn't leak urine? >> >>Thanks in advance, >>Stacy >> >> >
Re: [QUAD-L] suprapubic and sling
Stacy, I want to be sure I understand your situation correctly. Do you currently use an indwelling catheter and want to switch to a super pubic catheter? And what is this sling that you speak of? I have a super pubic catheter, and while I'm pretty new to the game (to being a quad) I'd like to help shed some light if I can. I've been very happy with mine. Also when they talk about your urethra are they talking about closing it off completely to eliminate its leaking entirely? Personally, and this is my own deal, I think I'd be a little scared to have them close it off entirely. I take detrol LA to control bladder spasms and therefore leaking. Please contact me if you have any questions. But again like I say I'm pretty new to this, so I don't know how much help I can be. Lucinda C-4,5 complete July 31, '05 Mpls., MN --- On Mon, 2/1/10, Stacy Harim wrote: >From: Stacy Harim >Subject: Re: [QUAD-L] suprapubic and sling >To: wheelch...@aol.com, Quad-list@eskimo.com >Date: Monday, February 1, 2010, 4:07 PM > > >We increased the size but > can't only do that so many times. I just would like to be informed with info > from people that live with it day to day than just from a doctor. I trust > him but would like to know if anyone with a sling and a flaccid bladder have > any troubles with leaking or whatever may be a problem. I feel it's > important to be informed. > >Stacy > > > > From: "wheelch...@aol.com" >To: imwheelin1...@yahoo.com; > Quad-list@eskimo.com >Sent: Mon, February 1, 2010 7:28:28 AM >Subject: Re: [QUAD-L] suprapubic and sling > >Increasing the size of the cath might be the answer. Of course, there >could be a half dozen other tangible reasons too. You and your doctor have >access to your medical records, we don't. Offering suggestions without >this valuable information is too risky at best. >It can be even more critical when you don't trust your medical >doctor. >Best Wishes > >In a message dated 1/31/2010 10:27:04 P.M. Central Standard Time, >imwheelin1...@yahoo.com writes: >Hey all, >> >>I've been away for a while but need some advice. >> Not that I don't trust my doctor's advice but also would like to get the >> facts >> from people that live with it day to day. >> >>I've been having issues with >> leaking around my cath and instead of continuing to go up sizes, I've >> decided >> to go with the supra pubic until I drop some weight in my belly and get the >> stoma redone so I can cath through my abdomen. >> >>Anyhow here is >> the deal. My bladder doesn't hold urine at all and the doctor suggested >> a sling but I am really worried it won't work and then I'm back in surgery >> to >> get my urethra tied off. What if any advice do you all have that have a >> supra pubic and how did you handle what to do about your urethra so it >> wouldn't leak urine? >> >>Thanks in advance, >>Stacy >> >> >
Re: [QUAD-L] supplements
hi Nancy, supplements to help with sleep I would suggest Valerian, and to help with bone density I would suggest calcium probably Caltrate with vitamin D. However, I would always check with the doctor first before starting any supplements as I'm sure most people will tell you to be sure that they will not react with your meds negatively. Lucinda C-4,5 complete July 31, '05 Mpls., MN From: Nancy Pritchard To: quad-list@eskimo.com Sent: Sat, January 30, 2010 6:48:58 AM Subject: [QUAD-L] supplements You have all probably heard all this time and time again but sometimes it clicks and sometimes it goes in one ear and out the other... Any suggestions for supplements for : spasms bladder control issues sleep bone density etc peace be with you nancy
RE: [QUAD-L] Asking strangers for help
I have been using a chin controller since 1990. They tried me first on a sip n puff-not for me. The chin controller gives me ultimate control. I just designed a new chin controller collar and I absolutely love it. Instead of going around my neck and connecting, which means the entire weight-about 1 pound-hangs on my neck, it goes over my shoulders and the two pieces in back are connected by a short curved part. This means that most of the weight is distributed over my shoulders and has really made a difference in my neck pain. The other big advantage is the flexibility of placement because the small piece moves up and down depending on what I am wearing. And I do not have to wear a shirt with a collar or a turtleneck to protect my neck from the control collar. We also made me 2 new mouthsticks-one for the computer and one for reading. Hey guys, I’m a new person. J Joan C4 1990
Re: [QUAD-L] suprapubic and sling
We increased the size but can't only do that so many times. I just would like to be informed with info from people that live with it day to day than just from a doctor. I trust him but would like to know if anyone with a sling and a flaccid bladder have any troubles with leaking or whatever may be a problem. I feel it's important to be informed. Stacy From: "wheelch...@aol.com" To: imwheelin1...@yahoo.com; Quad-list@eskimo.com Sent: Mon, February 1, 2010 7:28:28 AM Subject: Re: [QUAD-L] suprapubic and sling Increasing the size of the cath might be the answer. Of course, there could be a half dozen other tangible reasons too. You and your doctor have access to your medical records, we don't. Offering suggestions without this valuable information is too risky at best. It can be even more critical when you don't trust your medical doctor. Best Wishes In a message dated 1/31/2010 10:27:04 P.M. Central Standard Time, imwheelin1...@yahoo.com writes: Hey all, > >I've been away for a while but need some advice. > Not that I don't trust my doctor's advice but also would like to get the > facts > from people that live with it day to day. > >I've been having issues with > leaking around my cath and instead of continuing to go up sizes, I've > decided > to go with the supra pubic until I drop some weight in my belly and get the > stoma redone so I can cath through my abdomen. > >Anyhow here is > the deal. My bladder doesn't hold urine at all and the doctor suggested > a sling but I am really worried it won't work and then I'm back in surgery > to > get my urethra tied off. What if any advice do you all have that have a > supra pubic and how did you handle what to do about your urethra so it > wouldn't leak urine? > >Thanks in advance, >Stacy > >
Re: [QUAD-L] power/manual/emotion
Mine is a Permobil C300, and I have aC4-5 injury.
Lucinda
C-4,5 complete
July 31, '05 Mpls., MN
--- On Sun, 1/31/10, linda...@comcast.net wrote:
From: linda...@comcast.net
Subject: Re: [QUAD-L] power/manual/emotion
To: Quad-list@eskimo.com
Date: Sunday, January 31, 2010, 3:45 PM
#yiv168938529 p {margin:0;}I have a power chair QuickieP320, Chindrive & it's
been a really good chair. I just ordered a Quantum4000 with a chindrive.
Lindaf
Re: [QUAD-L] Fw: media inquiry
Don't forget to tell the folks about New Mobility- March 2010 TRICK DOWN-RIPOFF, stories of the van conversion industry. If anyone has a story they wish to share with New Mobility Magazine, write to Ben. Best Wishes In a message dated 2/1/2010 2:48:07 P.M. Central Standard Time, bmatt...@earthlink.net writes: Greg, Because of your extensive experience with a variety of state-of-the-art chairs, I'm hoping you'll be willing to help with an article I'm writing for the New Mobility magazine Web-site. The article is about the newest innovations in pressure relief & redistribution. It's not about ointments, nutrition or cushions. It's about technology--the latest cool gear. I'm looking for people who have experienced pressure problems and are familiar with the latest in wheelchair tilt, recline and standing features. I want to know: What works and what doesn't? What do you think of the newest high-tech products and capabilities? What other solutions have you tried for pressure relief? Interviews can be done by phone or e-mail, and will take no more than 15 minutes. My deadline is next Mon., Feb. 8. Please feel free to pass this along to anyone you think might be a good source. Thanks very much, in advance, for your help and cooperation. Best, Ben Mattlin NewMobility.com bmatt...@earthlink.net - Original Message - From: _Greg_ (mailto:g...@eskimo.com) To: _quad-l...@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Monday, February 01, 2010 11:56 AM Subject: RE: [QUAD-L] power/manual/emotion I think the Permobil is the most comfortable chair I’ve had, plus I think they are the best looking chairs. (Though my TDX5 does look a lot like it, especially since I changed to a single post legrest. And the new back on my TDX is much nicer now than the first one.) I just wish they both were faster. I’m told front/mid wheel chairs will fishtail if they go any faster than 7.5. I LOVE the Permoil X850 Corpus. Looks like a dune buggy. It’s got a roll bar and the front wheels extend out for outdoor use. It’s got cool little mirrors on the front fenders. It just looks fast sitting there, but it only goes up to 9 mph. So I’d like to get the 21st Century Bounder _http://www.wheelchairs.com/_ (http://www.wheelchairs.com/) it’s not great looking, but looks better in person. I think I could make some changes to make it look better, single post legrest, a seat system like a Permobil, then get something to cover the electronics. My TDX5 has a nice seating system now. I think it’s an after market seat not usually on a TDX. It’s a hard back, tilt, recline, raises, the top corners are cut off to make it more comfortable on the shoulders, padded real well. The 21st Century chair still uses belt drive. But it goes 11.5 mph. It does look better than the old version, but still needs help. SPEED SPEED SPEED THAT’S WHAT I WANT. Greg permobil chairman 2s _http://www.usatechguide.org/itemreview.php?itemid=169_ (http://www.usatechguide.org/itemreview.php?itemid=169) leaning towards _http://www.permobil.com/USA/Products/Rehab/C500-Corpus/_ (http://www.permobil.com/USA/Products/Rehab/C500-Corpus/) next chair 8009772060
[QUAD-L] Fw: media inquiry
Greg, Because of your extensive experience with a variety of state-of-the-art chairs, I'm hoping you'll be willing to help with an article I'm writing for the New Mobility magazine Web-site. The article is about the newest innovations in pressure relief & redistribution. It's not about ointments, nutrition or cushions. It's about technology--the latest cool gear. I'm looking for people who have experienced pressure problems and are familiar with the latest in wheelchair tilt, recline and standing features. I want to know: What works and what doesn't? What do you think of the newest high-tech products and capabilities? What other solutions have you tried for pressure relief? Interviews can be done by phone or e-mail, and will take no more than 15 minutes. My deadline is next Mon., Feb. 8. Please feel free to pass this along to anyone you think might be a good source. Thanks very much, in advance, for your help and cooperation. Best, Ben Mattlin NewMobility.com bmatt...@earthlink.net - Original Message - From: Greg To: quad-list@eskimo.com Sent: Monday, February 01, 2010 11:56 AM Subject: RE: [QUAD-L] power/manual/emotion I think the Permobil is the most comfortable chair I've had, plus I think they are the best looking chairs. (Though my TDX5 does look a lot like it, especially since I changed to a single post legrest. And the new back on my TDX is much nicer now than the first one.) I just wish they both were faster. I'm told front/mid wheel chairs will fishtail if they go any faster than 7.5. I LOVE the Permoil X850 Corpus. Looks like a dune buggy. It's got a roll bar and the front wheels extend out for outdoor use. It's got cool little mirrors on the front fenders. It just looks fast sitting there, but it only goes up to 9 mph. So I'd like to get the 21st Century Bounder http://www.wheelchairs.com/ it's not great looking, but looks better in person. I think I could make some changes to make it look better, single post legrest, a seat system like a Permobil, then get something to cover the electronics. My TDX5 has a nice seating system now. I think it's an after market seat not usually on a TDX. It's a hard back, tilt, recline, raises, the top corners are cut off to make it more comfortable on the shoulders, padded real well. The 21st Century chair still uses belt drive. But it goes 11.5 mph. It does look better than the old version, but still needs help. SPEED SPEED SPEED THAT'S WHAT I WANT. Greg -- permobil chairman 2s http://www.usatechguide.org/itemreview.php?itemid=169 leaning towards http://www.permobil.com/USA/Products/Rehab/C500-Corpus/ next chair 8009772060
RE: [QUAD-L] power/manual/emotion
I think the Permobil is the most comfortable chair I've had, plus I think they are the best looking chairs. (Though my TDX5 does look a lot like it, especially since I changed to a single post legrest. And the new back on my TDX is much nicer now than the first one.) I just wish they both were faster. I'm told front/mid wheel chairs will fishtail if they go any faster than 7.5. I LOVE the Permoil X850 Corpus. Looks like a dune buggy. It's got a roll bar and the front wheels extend out for outdoor use. It's got cool little mirrors on the front fenders. It just looks fast sitting there, but it only goes up to 9 mph. So I'd like to get the 21st Century Bounder http://www.wheelchairs.com/ it's not great looking, but looks better in person. I think I could make some changes to make it look better, single post legrest, a seat system like a Permobil, then get something to cover the electronics. My TDX5 has a nice seating system now. I think it's an after market seat not usually on a TDX. It's a hard back, tilt, recline, raises, the top corners are cut off to make it more comfortable on the shoulders, padded real well. The 21st Century chair still uses belt drive. But it goes 11.5 mph. It does look better than the old version, but still needs help. SPEED SPEED SPEED THAT'S WHAT I WANT. Greg _ permobil chairman 2s http://www.usatechguide.org/itemreview.php?itemid=169 leaning towards http://www.permobil.com/USA/Products/Rehab/C500-Corpus/ next chair 8009772060
Re: [QUAD-L] Asking strangers for help
LindaF, and then there was the Star-Tek, head control, like Karen Vaughn has. Best Wishes In a message dated 2/1/2010 1:31:29 P.M. Central Standard Time, linda...@comcast.net writes: I am a living with a C4-5 injury 1987 & didn't have a power chair for 10yrs. I have tried sip & puff & hated it, I liked the head array but couldn't get good control in close quarters. I just about ramed my mouthstick down my throat pulling under my desk. I couldn't get in my van so I am going to stick with the chin drive. Yes my mouth & neck hurts bad all the time but ya have to suck it up & do it. When I get in bed at night I have my CNA microwave my neck warmer. Plus it's the best sleeping pill in the world!!! I remember the E&J's, I used a sip & puff one in rehab. Lindaf - Original Message - From: daa...@aol.com To: linda...@comcast.net Sent: Monday, February 1, 2010 3:34:00 AM GMT -06:00 US/Canada Central Subject: Re: [QUAD-L] Asking strangers for help That is so true ? What caused you to get a chin control? What level are you? I've always had a right side control. Is it hard to your chin to do all the functions. I can't reached the switches only the joystick. it would be better if joystick could be closer it is hard to reach a lot of times. they changed the design of the switches. I could reach them in my old chair. They don't make a lot of flexibility in placement which is not good. it is a lot better than my first year 35 years ago and so much more comfortable. I have of Permobile my second one, before that I always had E &J. You may not even remember that chair. Dana
Re: [QUAD-L] Asking strangers for help
I am a living with a C4-5 injury 1987 & didn't have a power chair for 10yrs. I have tried sip & puff & hated it, I liked the head array but couldn't get good control in close quarters. I just about ramed my mouthstick down my throat pulling under my desk. I couldn't get in my van so I am going to stick with the chin drive. Yes my mouth & neck hurts bad all the time but ya have to suck it up & do it. When I get in bed at night I have my CNA microwave my neck warmer. Plus it's the best sleeping pill in the world!!! I remember the E&J's, I used a sip & puff one in rehab. Lindaf - Original Message - From: daa...@aol.com To: linda...@comcast.net Sent: Monday, February 1, 2010 3:34:00 AM GMT -06:00 US/Canada Central Subject: Re: [QUAD-L] Asking strangers for help That is so true ? What caused you to get a chin control? What level are you? I've always had a right side control. Is it hard to your chin to do all the functions. I can't reached the switches only the joystick. it would be better if joystick could be closer it is hard to reach a lot of times. they changed the design of the switches. I could reach them in my old chair. They don't make a lot of flexibility in placement which is not good. it is a lot better than my first year 35 years ago and so much more comfortable. I have of Permobile my second one, before that I always had E &J. You may not even remember that chair. Dana
RE: [QUAD-L] sleep number beds
I've been sleeping on a regular hospital bed for over 3 years now, my mattress is an intelli-gel and I absolutely love it, it's s comfy, and I've never had a bed sore or any skin issues and I stay in the same position for quite long, sometimes all night even. Lissette Whitehead www.lissettesgoaltowalk.synthasite.com www.lwgripgloves.com Date: Thu, 28 Jan 2010 15:23:23 -0800 From: ddh...@sbcglobal.net To: quad-list@eskimo.com Subject: [QUAD-L] sleep number beds Hi all-- I was wanting to know if any of you had a sleep number bed ?? If so do you like it ? I have had rotton luck with some regular inner spring mattresses--the simmons I have now was very expensive and like sleeping on a sack of rocks lol--it had springs sticking out and was sunk in after only 2 years on a 10 year warranty---they replaced the mattress with another simmons but it is even worse and hard as concrete.(well almost ) lol So anyway i'm going to buy a new bed and many think the sleep number may be good for a quad--the sales lady thinks I should get the adjustable sleep number, that raises up head or foot---she has one and loves hers..I may try that because Then I could sit up if needed, and I have only had flat regular beds. If you have one and like them OR not, please let me know what you guys think on this subject? thanks in advance to everyone ! Dan H.** _ Hotmail: Free, trusted and rich email service. http://clk.atdmt.com/GBL/go/201469228/direct/01/
Re: [QUAD-L] suprapubic and sling
Increasing the size of the cath might be the answer. Of course, there could be a half dozen other tangible reasons too. You and your doctor have access to your medical records, we don't. Offering suggestions without this valuable information is too risky at best. It can be even more critical when you don't trust your medical doctor. Best Wishes In a message dated 1/31/2010 10:27:04 P.M. Central Standard Time, imwheelin1...@yahoo.com writes: Hey all, I've been away for a while but need some advice. Not that I don't trust my doctor's advice but also would like to get the facts from people that live with it day to day. I've been having issues with leaking around my cath and instead of continuing to go up sizes, I've decided to go with the supra pubic until I drop some weight in my belly and get the stoma redone so I can cath through my abdomen. Anyhow here is the deal. My bladder doesn't hold urine at all and the doctor suggested a sling but I am really worried it won't work and then I'm back in surgery to get my urethra tied off. What if any advice do you all have that have a supra pubic and how did you handle what to do about your urethra so it wouldn't leak urine? Thanks in advance, Stacy
