I also have the same problems you did. My switch to peristeen ( I participated in one of their early trials for SCI candidates) has been a complete game changer.
much quicker system-- approximately one hour much less pain and discomfort much less incontinence-- I went from an accident every few weeks to maybe once every three or four months almost never any problems with constipation the price of the system is a little steep... but with all of these advantages, and being able to travel, and getting so much time back, I couldn't imagine doing it any other way. if it ever goes off the market I'm in trouble. Ed On Tue, Nov 10, 2020 at 4:53 PM Tod Santee <[email protected]> wrote: > Hi Carla, > I'm not sure what kind of doc(s) you're seeing, but in my 37 yrs I've > found many doctors will quickly dismiss quad's complaints as just something > to get used to unless they are pretty well versed in spinal cord injuries > and the unusual complications we face. Almost any such doc would know that > sweating of any significant amount by a quad is very, very rarely "nothing > worth looking into." The differences in times, types and amounts of > sweating you describe with no outwardly obvious reasons would make me want > to seek info from a neurologist with experience with quads. My first > suggestion would be to try to keep a daily journal to include when the > sweating starts and what you were doing and even something as simple as > what position you were in just before it started (i.e. were you sitting > still, reaching, transferring, doing a bowel routine or exercise, etc.) and > is any of it accompanied by pain in the shoulder, neck, or even a side of > your ribs or abdomen. > My first guess would be a syrinx... it's likely been mentioned here > before but if you haven't heard of it, it's a stretch or longitudinal > (lenghtwise) opening between fibers of the spinal cord that fills with > cerebrospinal fluid. It can cause all manner of weird symptoms from pain > to sweating to occasional or continuing weakness. To the best of my > knowledge, the only definitive way to diagnose a syrinx with certainty is > with an MRI. > One thing I might suggest is to look into Craig Rehab Hospital's > website (they're in Denver) and see when their next online Q&A with a > nurse is. Craig specializes in SCI and their free online Q&A sessions can > be super helpful. When I was 13 yrs post-injury, I had what is called a > tethered cord... a situation where the spinal cord attaches to the dura (or > duramatter, the very tough surrounding tissue enclosing the brain and > spinal cord) and causes a strain or pull on that section as you move > around. My symptoms were similar but maybe not as severe as what you > described. Plus i had a lot of pain in one shoulder. (But again, it's > different for all of us.) There wasn't much of a public internet to speak > of at the time I had it but they pretty much diagnosed me over the phone, > asking for an MRI just to verify their suspicions. The tether caused a > syrinx enough that even I could see it on the films without medical > knowledge. > I went for a surgery that detached the cord from the dura and they > added tissue to make the area around the cord a bit larger. It was INSTANT > relief of pain & sweating when I woke from surgery!! > I hope that helps some. I could be 100% wrong, too, but it wouldn't > be a bad idea to look into it if you haven't already. I've heard these > similar symptoms from several quads. > > Best wishes & good luck, > --Tod > > > On Sunday, November 8, 2020, Carla Aarssen <[email protected]> wrote: > >> I am a C5 quad 18yrs now and for the last 10 or so have on and off issues >> with profuse sweating that lasts from minutes to weeks. Sometimes it is >> entire upper body sometimes it is only one side (not always same side) >> Sometimes I am cold well sweating sometimes I am hot. No doctor seems to >> think it is "worth" looking into but I know it is uncomfortable, >> embarrassing and greatly affects my daily living. My bowels move daily but >> not always much? My roho cushion is checked regularly. I have no skin >> issues. I drink plenty of juice and water...Any thoughts, ideas and/or >> suggestions? Thanks in advance. Enjoy your day đ >> >> Get Outlook for Android <https://aka.ms/ghei36> >> >> ------------------------------ >> *From:* Tod Santee <[email protected]> >> *Sent:* Saturday, November 7, 2020 3:23:41 PM >> *To:* Robert Vogel <[email protected]>; quad-list <[email protected]> >> *Subject:* [QUAD-L] Re: Intro/Hi Again and P.I.E. Bowel Care >> >> Hi Robert, >> Thanks for the very detailed info about this Peristeen / Coloplast >> system! I had never heard of it until you and another person here >> mentioned it. >> I'm glad to hear how well it works for you and especially happy to >> hear it from a fellow diver! Given its easy-sounding portability I'll be >> looking at this one a bit closer now, too. (Hopefully having more than one >> option doesn't complicate things! LOL!!) >> >> Best wishes, >> --Tod >> >> >> On Friday, November 6, 2020, Robert Vogel <[email protected]> wrote: >> >> Hi Todd, >> >> From my âsurvey of oneâ first look into âtrans anal irrigationâ as in the >> Peristeen system by Coloplast. It is >> similar (and different) than the PIE system. It is small (fits into a >> shaving kit size bag), light and portable. >> It consists of a clear plastic (soft) container that can hold up to >> 1500cc of tap water, tubing, a small hand-squeeze >> pump, a controller, and the keyâa disposal rectal foley catheter. You >> fill up the Peristeen bag with luke warm tap >> waterâhowever much works for youâeverybody is different, the average >> amount is around 500-600cc of water. >> Next insert the rectal foley into your rectumânext there is a simple >> plastic âdialâ controller, you turn the dial to >> inflate, squeeze the rubber-ball like pump once or twiceâthis inflates >> the foley balloon which holds the catheter >> into your rectum and prevents any water from coming out. Next you turn >> the dial to âwaterâ and start squeezing >> the ball to fill up your large intestine with water, which generally goes >> about 1/2 way into your large intestine, thatâs >> about 2 1/2 feet. Then turn the dial to âdeflateâ remove the rectal foley >> and wait. The tap water does two things, it >> softens and lubricates stool in your colon, and it acts as a mild >> stimulate which causes the colon to contract. >> >> In my experience the entire process takes about 40 minutes and empties me >> out like nothing Iâve tried in 35-years. >> CT scans with contrast show that Peristeen empties out 2 1/2 feet of >> colonâthe average bowel program and/or >> the average non-disabled person having a bowel movement only empties >> about 6-8 inches of colon. It empties >> me out so much that I only have to go every other day and I havenât had >> an accident in the 8-years since Iâve >> been using it. >> >> I find it is great for use at home, even better when travel, especially >> on dive trips when I want to be extra cleaned >> out. >> >> Caveat, you need a prescription from your doctor and need to be trained >> by a Peristeen trainer, which can be >> arranged through Coloplast but takes time. And insurance coverage is >> spotty at best. >> >> Here is the link: >> https://products.coloplast.us/coloplast/continence-care/peristeen/peristeen-tai/peristeen-balloon-catheter/peristeen-anal-irrigation-system/ >> >> I hope this helps. >> Bob Vogel >> >> On Nov 6, 2020, at 3:31 PM, Tod Santee <[email protected]> wrote: >> >> Hi Everybody! >> Some of you might remember me. I'm a moldy, oldie at the Q-List >> since the mid-90s maybe, but since I haven't checked in for a long time I >> guess I'm a bit of a newbie to many here, too. I'm a male C5-6 Quad, 37 >> yrs post injury from a fall from a tree. >> So first off... "Hi!" to all my old friends & acquaintances here. >> And, looking forward to meeting those who are "new" since I stopped posting >> and following closely. >> My MAIN reason for writing, tho, is this: For many years... almost >> since the beginning of this "new normal" life... my bowel routine would >> take 3-4 hrs from suppository (or whatever other kind of bowel stimulant) >> to finish with a whole lot of digital stimulation along the way. It's >> always been (pardon the pun) a pain in the ass! I'm sure I'm alone on that >> last bit!! LOL! >> Problem is, lately I've been waiting just as long but now sweating >> like crazy throughout the majority of that time. A colonoscopy shows no >> irregularities other than some minor exterior hemorrhoids that I've had for >> at least 30yrs... i.e. no change there. >> So I'm looking for a change in process and I've been encouraged to >> look into the P.I.E. system (P.I.E. = something like "Pulsed Irrigated >> Evacuation.") that uses a catheter to fill the bowel with water and let it >> empty into a container (lather, rinse, repeat until done). I looked it up >> online & it has a pretty decent animated video of how it works. BUT, it's >> big & I'd guess expensive if insurance doesn't cover it. >> I figured I'd turn to the experts here to see if anybody has tried >> this, how well it worked --our not-- and how you'd deal with things if/when >> traveling. My wife and I enjoy world travel to not-so-accessible locations >> for scuba diving trips... at least up until a year ago. >> Any ideas or opinions on this P.I.E. system from anybody familiar >> with it would be SUPER appreciated!!! >> >> Thanks All, >> --Tod >> >> >> -- Edward Tessier Vice President 191 W 4th Street Pomona, CA 91766 M (909) 994-5900
