[QUAD-L] http://spinalcordinjured.net help!
I need your help with the http://spinalcordinjured.net http://spinalcordinjured.net/ ! I need help adding content to the website. Anyone that's interested can just register on the site and submit stories, news, or links to websites for various information! Thanks in advance! Danny Espinoza 26/m/California Occupation before accident Network engineer / SR. Network security engineer What happened: Broke c2,c6,c7 with doner bone at c2 Traumatic brain injury from blood going to central cortex from spinal cord not vent dependendent anymore. :] My myspace address - http://www.myspace.com/dannylnx My spinal cord injury support website - http://spinalcordinjured.net/
Re: [QUAD-L] TRAINED BLADDER- Thumping
Back in ’88 they were teaching the tap and credae method; and it was not working for me, until I started drinking beer on home visits. After several tall cans of barley-pop; I felt this strange sensation near my anus, the flood gates opened and the urine process was so forceful it blew my condom cath clean off of me. When I returned to the hospital I told my rehab doc about the beer making me void on my own; and he prescribed me 3 beers a day (my rehab doc was a marathon running non-drinker), now I just have a couple of beers every other day. I have been cathed about 5 or 6 times in over 20 years (due to a full bowel and the few bladder infections I have had), I’ve only had about three bladder infections. I void about 300 to 500 cc’s each time I void and always have residual; but I’ve been told that my mass amounts of water that I drink doesn’t give bacteria a chance to grow. I recently had an abdominal/pelvic CT w/contrast done, and it showed that my kidneys and everything looked good, my BUN and Creatinine levels have always been good as well. This way of voiding may not be for everyone; but any invasive anything puts you at risk for infection. Nearly 21 years later I still void on my own (I use the Freedom Active condom cath and a leg bag) if I am going in somewhere for a long period of time, I will tap whatever I can out. Tim c5-c6, 20 yrs. post www.geocities.com/onemofortom WhoopieKat.com --- On Thu, 4/9/09, wheelch...@aol.com wheelch...@aol.com wrote: From: wheelch...@aol.com wheelch...@aol.com Subject: Re: [QUAD-L] TRAINED BLADDER- Thumping To: alcibiat...@yahoo.com, QUAD-LIST@eskimo.com Date: Thursday, April 9, 2009, 4:07 PM Bladder Thumping, must be a guy thang, lol. I've never known a woman to try it. Rare is thumping advised because it does not completely empty the bladder, but does well it voiding a full bladder. So you are always voiding about 80% of your bladder and allowing the rest of the urine to populate bacteria. Urologist like when the bladder is completely emptied. I know of some old men who are walking with impaired bladders that don't empty with each void. They too are prone to bladder infections and UTIs. Remember that at no time should you void more then 800 cc or urine without stopping for 3-10 minutes, to allow the bladder to contract and prevent a possible stroke. But John, I'm sure that you heard that too. Best Wishes W In a message dated 4/9/2009 3:27:12 P.M. Central Daylight Time, alcibiat...@yahoo.com writes: For the last 12 years, I've only been catheterized to see what residual is left in my bladder. I'm usually between 30 to 50 CC's. My bladder control is based on me stimulating my bladder by a series of taps on my abdomen. If I lay in bed, an external catherter is a must, it seems to flow in 250CC increments. after about 5 hours in the chair, I can use a urinal and get about 500CC's. Very few, (actually none)have mentioned this method. Is it no longer in vogue at rehab centers? I realize it takes 3 to 6 months to train the bladder, but is it even attempted? I remember several people in the 80's using electrodes to train their bladder to empty fully. I haven't heard any of the younger quads that have any idea what I'm talking about. It seems like everyone goes right to an SP. then they experience chronic infections that diminish the efficasy of anti-biotics when they get other infections. The other thing I've noticed is so many take anti-biotics and I'm hoping they are replacing the good bacteria. A lot of the side effects of anti-biotics do not occur if you replace the good bacteria that was just wiped by the medicine. In studies, a healthy colony of good bacteria keep the bad bacteria in check by consuming the food supply the pseudomonas and staph bacteria need to grow. This includes MRSA. There is nothing new about fighting bad bacteria with benificial bacteria, and it is even being sold as a daily health drink. A lot of health food stores have much more potent forms to take for chronic infections. Best Wishes, john Yeah, the guy with a runaway skin infection from a frickin' spider bite. I haven't had this much medicine since I had pneumonia in '94. New Deals on Dell Netbooks - Now starting at $299
[QUAD-L] strange pains
HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
Re: [QUAD-L] strange pains
I would cautiously suggest that you notify your primary doctor and tell him what you are doing with the meds. Taking such powerful drugs to mask the pain may not be the best thing. Call your doctor first. Best Wishes In a message dated 4/16/2009 11:12:13 A.M. Central Daylight Time, ddh...@sbcglobal.net writes: HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA. **Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown0003)
RE: [QUAD-L] strange pains
Danny, I have experienced nearly the exact same pains you described in the same locations 24/7/365 for 20 years. The affected areas also feel like they are immersed in buckets of ice water. I've tried pain meds, anti-seizure meds, anti-depressants, biofeedback, acupuncture and hypnosis. Sadly, nothing has worked. I hope you find a solution. Steve - C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 12:11 PM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
FW: [QUAD-L] strange pains
If your bladder is cultivating bugs your pain as described will increase as will spasms. There are ways to lower the bug count in the bladder other than anti-biotics. I went from two infections every three months to one in a year or two by getting a supra-pubic. The sympathetic nerve pain you described in arms is horrendous but drugs do help me also. I am having an undiagnosed problem going on which I believe to be urinary related. _ From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Thursday, April 16, 2009 9:15 AM To: ddh...@sbcglobal.net; quad-list@eskimo.com Subject: Re: [QUAD-L] strange pains I would cautiously suggest that you notify your primary doctor and tell him what you are doing with the meds. Taking such powerful drugs to mask the pain may not be the best thing. Call your doctor first. Best Wishes In a message dated 4/16/2009 11:12:13 A.M. Central Daylight Time, ddh...@sbcglobal.net writes: HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA. _ Access 350+ FREE radio stations anytime from anywhere on the web. Get http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown0003 the Radio Toolbar!
Re: FW: [QUAD-L] strange pains
thanks- Merrill, do you have any idea's on lowering bladder bug count? i know drinking lots of fluids and water help...I may have my wife flush my bladder soon also, as that seem's to help some. i'm like you and have a supra-pubic. Dan H. --- On Thu, 4/16/09, Merrill merril...@cox.net wrote: From: Merrill merril...@cox.net Subject: FW: [QUAD-L] strange pains To: quad-list@eskimo.com Date: Thursday, April 16, 2009, 11:33 AM If your bladder is cultivating bugs your pain as described will increase as will spasms. There are ways to lower the bug count in the bladder other than anti-biotics. I went from two infections every three months to one in a year or two by getting a supra-pubic. The sympathetic nerve pain you described in arms is horrendous but drugs do help me also. I am having an undiagnosed problem going on which I believe to be urinary related. From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Thursday, April 16, 2009 9:15 AM To: ddh...@sbcglobal.net; quad-list@eskimo.com Subject: Re: [QUAD-L] strange pains I would cautiously suggest that you notify your primary doctor and tell him what you are doing with the meds. Taking such powerful drugs to mask the pain may not be the best thing. Call your doctor first. Best Wishes In a message dated 4/16/2009 11:12:13 A.M. Central Daylight Time, ddh...@sbcglobal.net writes: HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS , MO. AREA. Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!
RE: [QUAD-L] strange pains
thanks for your input on this Steve, do you just live with it as best you can or do you still try pain meds? Dan H. --- On Thu, 4/16/09, Steve Oldaker steve.olda...@comcast.net wrote: From: Steve Oldaker steve.olda...@comcast.net Subject: RE: [QUAD-L] strange pains To: ddh...@sbcglobal.net, 'quad-list' quad-list@eskimo.com Date: Thursday, April 16, 2009, 11:29 AM Danny, I have experienced nearly the exact same pains you described in the same locations 24/7/365 for 20 years. The affected areas also feel like they are immersed in buckets of ice water. I’ve tried pain meds, anti-seizure meds, anti-depressants, biofeedback, acupuncture and hypnosis. Sadly, nothing has worked. I hope you find a solution. Steve – C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 12:11 PM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
RE: [QUAD-L] strange pains
I live with it the best I can. Keeping very busy has been my long term therapy. It gives me something else to think about. Idle time is not good for me. I do take 1.5 tabs of Hydrocodone in the evening. Doesn’t help a lot with the actual pain, but it helps me not obsess on it. If a doctor or scientist came to me and said I could now have a choice between having voluntary movement again but all the same pain, or no pain but still no voluntary movement, it might be a hard choice. Steve – C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 1:18 PM To: 'quad-list'; Steve Oldaker Subject: RE: [QUAD-L] strange pains thanks for your input on this Steve, do you just live with it as best you can or do you still try pain meds?Dan H. --- On Thu, 4/16/09, Steve Oldaker steve.olda...@comcast.net wrote: From: Steve Oldaker steve.olda...@comcast.net Subject: RE: [QUAD-L] strange pains To: ddh...@sbcglobal.net, 'quad-list' quad-list@eskimo.com Date: Thursday, April 16, 2009, 11:29 AM Danny, I have experienced nearly the exact same pains you described in the same locations 24/7/365 for 20 years. The affected areas also feel like they are immersed in buckets of ice water. I’ve tried pain meds, anti-seizure meds, anti-depressants, biofeedback, acupuncture and hypnosis. Sadly, nothing has worked. I hope you find a solution. Steve – C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 12:11 PM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
RE: [QUAD-L] TRAINED BLADDER- Thumping
Interesting.. I personally don't like most beers, but I will have to keep that in mind and maybe try it one day Danny Espinoza 26/m/California Occupation before accident Network engineer / SR. Network security engineer What happened: Broke c2,c6,c7 with doner bone at c2 Traumatic brain injury from blood going to central cortex from spinal cord not vent dependendent anymore. :] My myspace address - http://www.myspace.com/dannylnx http://www.myspace.com/dannylnx My spinal cord injury support website - http://spinalcordinjured.net/ http://spinalcordinjured.net/ From: t crook [mailto:onemofor...@yahoo.com] Sent: Thursday, April 16, 2009 8:51 AM To: alcibiat...@yahoo.com; QUAD-LIST@eskimo.com; wheelch...@aol.com Subject: Re: [QUAD-L] TRAINED BLADDER- Thumping Back in ’88 they were teaching the tap and credae method; and it was not working for me, until I started drinking beer on home visits. After several tall cans of barley-pop; I felt this strange sensation near my anus, the flood gates opened and the urine process was so forceful it blew my condom cath clean off of me. When I returned to the hospital I told my rehab doc about the beer making me void on my own; and he prescribed me 3 beers a day (my rehab doc was a marathon running non-drinker), now I just have a couple of beers every other day. I have been cathed about 5 or 6 times in over 20 years (due to a full bowel and the few bladder infections I have had), I’ve only had about three bladder infections. I void about 300 to 500 cc’s each time I void and always have residual; but I’ve been told that my mass amounts of water that I drink doesn’t give bacteria a chance to grow. I recently had an abdominal/pelvic CT w/contrast done, and it showed that my kidneys and everything looked good, my BUN and Creatinine levels have always been good as well. This way of voiding may not be for everyone; but any invasive anything puts you at risk for infection. Nearly 21 years later I still void on my own (I use the Freedom Active condom cath and a leg bag) if I am going in somewhere for a long period of time, I will tap whatever I can out. Tim c5-c6, 20 yrs. post www.geocities.com/onemofortom WhoopieKat.com http://www.whoopiekat.com/ --- On Thu, 4/9/09, wheelch...@aol.com wheelch...@aol.com wrote: From: wheelch...@aol.com wheelch...@aol.com Subject: Re: [QUAD-L] TRAINED BLADDER- Thumping To: alcibiat...@yahoo.com, QUAD-LIST@eskimo.com Date: Thursday, April 9, 2009, 4:07 PM Bladder Thumping, must be a guy thang, lol. I've never known a woman to try it. Rare is thumping advised because it does not completely empty the bladder, but does well it voiding a full bladder. So you are always voiding about 80% of your bladder and allowing the rest of the urine to populate bacteria. Urologist like when the bladder is completely emptied. I know of some old men who are walking with impaired bladders that don't empty with each void. They too are prone to bladder infections and UTIs. Remember that at no time should you void more then 800 cc or urine without stopping for 3-10 minutes, to allow the bladder to contract and prevent a possible stroke. But John, I'm sure that you heard that too. Best Wishes W In a message dated 4/9/2009 3:27:12 P.M. Central Daylight Time, alcibiat...@yahoo.com writes: For the last 12 years, I've only been catheterized to see what residual is left in my bladder. I'm usually between 30 to 50 CC's. My bladder control is based on me stimulating my bladder by a series of taps on my abdomen. If I lay in bed, an external catherter is a must, it seems to flow in 250CC increments. after about 5 hours in the chair, I can use a urinal and get about 500CC's. Very few, (actually none)have mentioned this method. Is it no longer in vogue at rehab centers? I realize it takes 3 to 6 months to train the bladder, but is it even attempted? I remember several people in the 80's using electrodes to train their bladder to empty fully. I haven't heard any of the younger quads that have any idea what I'm talking about. It seems like everyone goes right to an SP. then they experience chronic infections that diminish the efficasy of anti-biotics when they get other infections. The other thing I've noticed is so many take anti-biotics and I'm hoping they are replacing the good bacteria. A lot of the side effects of anti-biotics do not occur if you replace the good bacteria that was just wiped by the medicine. In studies, a healthy colony of good bacteria keep the bad bacteria in check by consuming the food supply the pseudomonas and staph bacteria need to grow. This includes MRSA. There is nothing new about fighting bad bacteria with benificial bacteria, and it is even being sold as a daily health drink. A lot of health food stores have much more potent forms to take for chronic infections. Best Wishes, john Yeah, the guy with a runaway skin infection from a
RE: [QUAD-L] strange pains
No unfortunately. I don't want to give you false hope but what you're describing is what they told me at Craig hospital as the first stage of return. Normally it happens within the first three or four years. seeing as you're more than 11 1/2 years post I'm not sure what that means. That happens to me also but only when someone squeezes or touches a certain area of my legs when they let go it stops. Where was your injury? that would help to know. Danny Espinoza 26/m/California Occupation before accident Network engineer / SR. Network security engineer What happened: Broke c2,c6,c7 with doner bone at c2 Traumatic brain injury from blood going to central cortex from spinal cord not vent dependendent anymore. :] My myspace address - http://www.myspace.com/dannylnx My spinal cord injury support website - http://spinalcordinjured.net/ From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 9:11 AM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
FW: FW: [QUAD-L] strange pains
A product I found on the internet with google is UTI Clear. It is a little pricy but personally I like it. 1000mg of vitamin C daily along with Methalemine Mandelate an acidifier helps lower bugs. Get checked for kidney stones annually. _ From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 10:16 AM To: quad-list@eskimo.com; Merrill Subject: Re: FW: [QUAD-L] strange pains thanks- Merrill, do you have any idea's on lowering bladder bug count? i know drinking lots of fluids and water help...I may have my wife flush my bladder soon also, as that seem's to help some. i'm like you and have a supra-pubic. Dan H. --- On Thu, 4/16/09, Merrill merril...@cox.net wrote: From: Merrill merril...@cox.net Subject: FW: [QUAD-L] strange pains To: quad-list@eskimo.com Date: Thursday, April 16, 2009, 11:33 AM If your bladder is cultivating bugs your pain as described will increase as will spasms. There are ways to lower the bug count in the bladder other than anti-biotics. I went from two infections every three months to one in a year or two by getting a supra-pubic. The sympathetic nerve pain you described in arms is horrendous but drugs do help me also. I am having an undiagnosed problem going on which I believe to be urinary related. _ From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Thursday, April 16, 2009 9:15 AM To: ddh...@sbcglobal.net; quad-list@eskimo.com Subject: Re: [QUAD-L] strange pains I would cautiously suggest that you notify your primary doctor and tell him what you are doing with the meds. Taking such powerful drugs to mask the pain may not be the best thing. Call your doctor first. Best Wishes In a message dated 4/16/2009 11:12:13 A.M. Central Daylight Time, ddh...@sbcglobal.net writes: HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS , MO. AREA. _ Access 350+ FREE radio stations anytime from anywhere on the web. http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown0003 Get the Radio Toolbar!
RE: [QUAD-L] strange pains
Like you, Steve, I have learned to live with it. As long as I can keep busy, stay interested in different projects-our horses, gardening, grandkids, my volunteer work, and the Internet, it is a big nuisance but not overwhelming. We all have different levels of pain, and I have been fortunate to have a high threshold for pain, both before and after my accident. I take Tylenol for neck and shoulder pain when it becomes too demanding for me to ignore. After 18 years I am still getting return in different areas, but unfortunately it is only to the touch return. No matter how hard I exercise (I have a sling that we suspend my arms in and I exercise the little bicep muscle that I have by moving my shoulder and then trying to stop the sling motion to build up my muscles J) it doesn’t seem to do anything, but it makes me feel I am trying the best I can. My neck and shoulder muscles are exceedingly strong and I have never used a headrest after leaving rehab, so I can relax by tilting my chair way back and then dropping my head back and letting my neck stretch out. It really helps. Joan
Re: [QUAD-L] strange pains
Like Steve and Joan have said, I also have the similar type pain Dan mentioned he's dealing with. Mine is also with the severe ice burning pain in my abdomen and back and the hot burning pain in my butt and legs with the needles and feeling like they are asleep. I have been dealing with it for about 15 1/2 years. My pain started about 3 months after my injury and has only increased. I also have a syrinx and have had the shunt surgery to see if it would decrease the pain, but it did nothing. Like Steve mentioned, I have tried pretty much everything out there to reduce the pain and even got a baclofen pump to add anesthesia type medication to relieve the nerve pain, but nothing has helped. I also tried about 5-6 months ago a new pain medication in my pump, called prialt, which is an ocean poisonous snail venom turned into chronic pain medication. I couldn't get past the severe side effects for me of constipation. It wasn't a typical side effect, but nonetheless, I could not deal with the constipation and added pain to get to the therapeutic dosage to continue. So like Steve and Joan mentioned, I have just used staying busy with distraction to cope with my pain. I've spent nearly 16 years going to school, getting my BA and Masters degree, then working as a Marriage Family Therapist Intern and recently becoming licensed, and also adopting two children over the past two years... so focusing on my goals and dreams has really helped me cope with my pain the best. It also has helped having a supportive family, having my dream of having children come true, and getting into a career I love. I do take an antidepressant medication (doxepin) and Klonopin at night to help me sleep and cope with the pain, but nothing gets rid of the pain. I hope they continue on the path of trying to find a cure for neuropathic pain as well as for spinal cord injuries. Corie, C 4-5, incomplete - Original Message - From: Steve Oldaker To: ddh...@sbcglobal.net ; 'quad-list' Sent: Thursday, April 16, 2009 9:29 AM Subject: RE: [QUAD-L] strange pains Danny, I have experienced nearly the exact same pains you described in the same locations 24/7/365 for 20 years. The affected areas also feel like they are immersed in buckets of ice water. I've tried pain meds, anti-seizure meds, anti-depressants, biofeedback, acupuncture and hypnosis. Sadly, nothing has worked. I hope you find a solution. Steve - C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 12:11 PM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
Re: [QUAD-L] strange pains
Steve said... If a doctor or scientist came to me and said I could now have a choice between having voluntary movement again but all the same pain, or no pain but still no voluntary movement, it might be a hard choice. Same here! I tell people all the time that the chronic nerve pain is much worse than the paralysis. My ideal choice would probably be, no pain, and enough return to be a para... of course I want to walk again, but having use of my hand to have independence back and no pain would be great! Corie - Original Message - From: Steve Oldaker To: ddh...@sbcglobal.net ; 'quad-list' Sent: Thursday, April 16, 2009 10:45 AM Subject: RE: [QUAD-L] strange pains I live with it the best I can. Keeping very busy has been my long term therapy. It gives me something else to think about. Idle time is not good for me. I do take 1.5 tabs of Hydrocodone in the evening. Doesn’t help a lot with the actual pain, but it helps me not obsess on it. If a doctor or scientist came to me and said I could now have a choice between having voluntary movement again but all the same pain, or no pain but still no voluntary movement, it might be a hard choice. Steve – C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 1:18 PM To: 'quad-list'; Steve Oldaker Subject: RE: [QUAD-L] strange pains thanks for your input on this Steve, do you just live with it as best you can or do you still try pain meds?Dan H. --- On Thu, 4/16/09, Steve Oldaker steve.olda...@comcast.net wrote: From: Steve Oldaker steve.olda...@comcast.net Subject: RE: [QUAD-L] strange pains To: ddh...@sbcglobal.net, 'quad-list' quad-list@eskimo.com Date: Thursday, April 16, 2009, 11:29 AM Danny, I have experienced nearly the exact same pains you described in the same locations 24/7/365 for 20 years. The affected areas also feel like they are immersed in buckets of ice water. I’ve tried pain meds, anti-seizure meds, anti-depressants, biofeedback, acupuncture and hypnosis. Sadly, nothing has worked. I hope you find a solution. Steve – C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 12:11 PM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR--- TO DESCRIBE IT IS LIKE THIS..MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS..IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
