I have had bladder spasms for a couple of years and
nothing seems to work. The VA wants to shoot BOTOX
into my bladder to paralyze it, thus making it unable
to spasm. Anyone heard of this, or am I again being the
governments GINIPIG!
0
27yrs And Getting Botox
Started by
*jlo*
, Apr 30 2008 01:02 PM
9 replies to this topic
#1 *jlo*
*jlo*
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Posted 30 April 2008 - 01:02 PM
So I have to question anything the VA wants to try.
I have had bladder spasms for a couple of years and
nothing seems to work. The VA wants to shoot BOTOX
into my bladder to paralyze it, thus making it unable
to spasm. Anyone heard of this, or am I again being the
governments GINIPIG!
I have had bladder spasms for a couple of years and
nothing seems to work. The VA wants to shoot BOTOX
into my bladder to paralyze it, thus making it unable
to spasm. Anyone heard of this, or am I again being the
governments GINIPIG!
Top#2
GettingTired2
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Posted 30 April 2008 - 01:31 PM
Hi there,
I was curious about this, so I've done some checking, and found a few sites that actually say it's helpful... Botox shows potential for bladder spasms and leakages. http://www.news-medical.net/?id=33254
I'd be interested to know if it actually works. Take care.
Tammy
P.S. It seems clinical studies just started in Dec 07.
“Damaged nerves may send signals to the bladder at the wrong time, causing its muscles to squeeze without warning,” said Dr. Lemack. “The Botox prevents the bladder muscles from having these spasms that lead to urinary frequency and urgency. The treatment will vastly improve bladder function in the majority of patients for a period of six to nine months.”
http://www.scienceda...71205095354.htm
Hope this helps.
I was curious about this, so I've done some checking, and found a few sites that actually say it's helpful... Botox shows potential for bladder spasms and leakages. http://www.news-medical.net/?id=33254
I'd be interested to know if it actually works. Take care.
Tammy
P.S. It seems clinical studies just started in Dec 07.
“Damaged nerves may send signals to the bladder at the wrong time, causing its muscles to squeeze without warning,” said Dr. Lemack. “The Botox prevents the bladder muscles from having these spasms that lead to urinary frequency and urgency. The treatment will vastly improve bladder function in the majority of patients for a period of six to nine months.”
http://www.scienceda...71205095354.htm
Hope this helps.
Edited by GettingTired2, 30 April 2008 - 01:36 PM.
#3
Yong
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Posted 30 April 2008 - 02:06 PM
I was signed up for this study down here at Shepherd Center in Atlanta, Georgia. My doctor (who is a T1) told me that he had gotten this botox injection and suffered severe AD the first couple nights but was okay afterwards. He advised me to get the injection (i also have MASSIVE bladder spasms) especially if the research center was going to pay for it.
The problem with botox is that you would have to get injections every so often just like any botox injection. As of now, I don't think insurance will cover the cost.
Right now, I've decided against the botox injection because I've heard of a new PERMANENT way to solve incontinence.
It's a new procedure called bladder augmentation where they go in and biopsy a piece of your own bladder. They grow it in a lab for 3 months and add it back to your own bladder, thus increasing the volume. They've done it in the past with your bowel, but that caused more infections. Taking your own bladder, growing it, and adding it back on would cause little to no infections or rejection by the body.
I had urodynamics done just a couple days ago and was told that my bladder would only contain 130 mL before refluxing. The pressure of the reflux was 120mmHg, which is 80 above normal. The doctors were very surprised that I didn't have any backflow into my kidneys.
The operation would increase my bladder capacity by 450mL, making it about 550mL. It won't solve the problem of my bladder squeezing..but I will be able to retain more urine between ICs.
Ask about the bladder augmentation procedure to your urologist.
The problem with botox is that you would have to get injections every so often just like any botox injection. As of now, I don't think insurance will cover the cost.
Right now, I've decided against the botox injection because I've heard of a new PERMANENT way to solve incontinence.
It's a new procedure called bladder augmentation where they go in and biopsy a piece of your own bladder. They grow it in a lab for 3 months and add it back to your own bladder, thus increasing the volume. They've done it in the past with your bowel, but that caused more infections. Taking your own bladder, growing it, and adding it back on would cause little to no infections or rejection by the body.
I had urodynamics done just a couple days ago and was told that my bladder would only contain 130 mL before refluxing. The pressure of the reflux was 120mmHg, which is 80 above normal. The doctors were very surprised that I didn't have any backflow into my kidneys.
The operation would increase my bladder capacity by 450mL, making it about 550mL. It won't solve the problem of my bladder squeezing..but I will be able to retain more urine between ICs.
Ask about the bladder augmentation procedure to your urologist.
#4 *jlo*
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Posted 30 April 2008 - 02:21 PM
Yong, on Apr 30 2008, 08:06 AM, said:
I was signed up for this study down here at Shepherd Center in Atlanta, Georgia. My doctor (who is a T1) told me that he had gotten this botox injection and suffered severe AD the first couple nights but was okay afterwards. He advised me to get the injection (i also have MASSIVE bladder spasms) especially if the research center was going to pay for it.
The problem with botox is that you would have to get injections every so often just like any botox injection. As of now, I don't think insurance will cover the cost.
Right now, I've decided against the botox injection because I've heard of a new PERMANENT way to solve incontinence.
It's a new procedure called bladder augmentation where they go in and biopsy a piece of your own bladder. They grow it in a lab for 3 months and add it back to your own bladder, thus increasing the volume. They've done it in the past with your bowel, but that caused more infections. Taking your own bladder, growing it, and adding it back on would cause little to no infections or rejection by the body.
I had urodynamics done just a couple days ago and was told that my bladder would only contain 130 mL before refluxing. The pressure of the reflux was 120mmHg, which is 80 above normal. The doctors were very surprised that I didn't have any backflow into my kidneys.
The operation would increase my bladder capacity by 450mL, making it about 550mL. It won't solve the problem of my bladder squeezing..but I will be able to retain more urine between ICs.
Ask about the bladder augmentation procedure to your urologist.
The problem with botox is that you would have to get injections every so often just like any botox injection. As of now, I don't think insurance will cover the cost.
Right now, I've decided against the botox injection because I've heard of a new PERMANENT way to solve incontinence.
It's a new procedure called bladder augmentation where they go in and biopsy a piece of your own bladder. They grow it in a lab for 3 months and add it back to your own bladder, thus increasing the volume. They've done it in the past with your bowel, but that caused more infections. Taking your own bladder, growing it, and adding it back on would cause little to no infections or rejection by the body.
I had urodynamics done just a couple days ago and was told that my bladder would only contain 130 mL before refluxing. The pressure of the reflux was 120mmHg, which is 80 above normal. The doctors were very surprised that I didn't have any backflow into my kidneys.
The operation would increase my bladder capacity by 450mL, making it about 550mL. It won't solve the problem of my bladder squeezing..but I will be able to retain more urine between ICs.
Ask about the bladder augmentation procedure to your urologist.
Thank you for all the great info. Why doesn't the VA give me all the options. Kinda makes me mad.
Very helpful thank you!
GettingTired2, on Apr 30 2008, 07:31 AM, said:
Hi there,
I was curious about this, so I've done some checking, and found a few sites that actually say it's helpful... Botox shows potential for bladder spasms and leakages. http://www.news-medical.net/?id=33254
I'd be interested to know if it actually works. Take care.
Tammy
P.S. It seems clinical studies just started in Dec 07.
“Damaged nerves may send signals to the bladder at the wrong time, causing its muscles to squeeze without warning,” said Dr. Lemack. “The Botox prevents the bladder muscles from having these spasms that lead to urinary frequency and urgency. The treatment will vastly improve bladder function in the majority of patients for a period of six to nine months.”
http://www.scienceda...71205095354.htm
Hope this helps.
I was curious about this, so I've done some checking, and found a few sites that actually say it's helpful... Botox shows potential for bladder spasms and leakages. http://www.news-medical.net/?id=33254
I'd be interested to know if it actually works. Take care.
Tammy
P.S. It seems clinical studies just started in Dec 07.
“Damaged nerves may send signals to the bladder at the wrong time, causing its muscles to squeeze without warning,” said Dr. Lemack. “The Botox prevents the bladder muscles from having these spasms that lead to urinary frequency and urgency. The treatment will vastly improve bladder function in the majority of patients for a period of six to nine months.”
http://www.scienceda...71205095354.htm
Hope this helps.
Thanks makes me feel more confident about it. I guess it will last for three months or so. If
it doesn't do the trick its not permanent!
#5
Tired of hurting
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Posted 30 April 2008 - 03:28 PM
I've had bladder spasms for 3 1/2 yrs. In the am I take vesicare 10mg, at night kolonpin It's the only thing that has helped me. I can hold 900cc now thats a spasm. My Dr. ordered Botox but insurance won't pay for it. I'm afraid it would make me leak which isn't a problem now. I really don't need anymore problems. Keep me posted on how it goes, or PM to talk. No one realizes how uncomfortable bladder spasms are, until you have them. Good Luck..
#6
Motor
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Posted 01 May 2008 - 04:03 AM
Tired of hurting, on Apr 30 2008, 11:28 AM, said:
I've had bladder spasms for 3 1/2 yrs. In the am I take vesicare 10mg, at night kolonpin It's the only thing that has helped me. I can hold 900cc now thats a spasm. My Dr. ordered Botox but insurance won't pay for it. I'm afraid it would make me leak which isn't a problem now. I really don't need anymore problems. Keep me posted on how it goes, or PM to talk. No one realizes how uncomfortable bladder spasms are, until you have them. Good Luck..
Good Luck
Richie aka Motor
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"CHEAP WOMAN AREN'T GOOD AND GOOD WOMAN AREN'T CHEAP"
"NEVER 4GET 9/11/01 THEY ARE GONE BUT NOT 4GOTTEN"
"I MUST CRAWL BEFORE I WALK (AGAIN)"
"LIVE EACH DAY LIKE ITS YOUR LAST"
"RIDE IT LIKE U STOLE IT"
Richie aka MOTOR :-)
"NEVER 4GET 9/11/01 THEY ARE GONE BUT NOT 4GOTTEN"
"I MUST CRAWL BEFORE I WALK (AGAIN)"
"LIVE EACH DAY LIKE ITS YOUR LAST"
"RIDE IT LIKE U STOLE IT"
Richie aka MOTOR :-)
#8
Yong
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Posted 01 May 2008 - 07:05 PM
jlo, on May 1 2008, 02:25 PM, said:
Well guys I'm all set up to get it done
the end of this month. I will let you all know how
it goes. I can't wait to get rid of the catheter and
bag. I know it will boost my confidence a ton.
Thanks to everyone that responded.
Joe
the end of this month. I will let you all know how
it goes. I can't wait to get rid of the catheter and
bag. I know it will boost my confidence a ton.
Thanks to everyone that responded.
Joe
Best of luck to you Joe!
Oh man...I can feel you on the condom cath and leg bag sh*t. I went out today to play tennis in shorts and had to have the leg bag dangling from my leg...not a very pretty sight... especially with urine in it. Haha. Best of luck to you again..and i pray you won't have any AD.
James
#9
qbounce
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Posted 01 May 2008 - 08:47 PM
Hey guys,
I tried Vesicare, didn't do me any good. Then Detrol, again, still had spazms and leakage issues. then, FINALLY I was perscribed OXYBUTYNIN, 5 mg's 3 times a day and, BINGO!! I haven't had any problems with bladder spasms since.
Long story short, try different med's/ methods until you find the one that works for you. Everyone's different, and I'd rather take med's first than go under the knife or get injections from doctors, but that's just me.
To each his own. . . whatever it takes to get us back out among the living!
I tried Vesicare, didn't do me any good. Then Detrol, again, still had spazms and leakage issues. then, FINALLY I was perscribed OXYBUTYNIN, 5 mg's 3 times a day and, BINGO!! I haven't had any problems with bladder spasms since.
Long story short, try different med's/ methods until you find the one that works for you. Everyone's different, and I'd rather take med's first than go under the knife or get injections from doctors, but that's just me.
To each his own. . . whatever it takes to get us back out among the living!
When we remember we are all mad, the mysteries disappear and life stands explained. - Mark Twain
#10
macsmaker
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Posted 05 August 2008 - 10:12 AM
I don't have an SCI, so my posting here may be inappropriate. If so, I apologize.
I have had botox injections three times over the last year or so for urge incontinence cause by some surgery. All three times it has been successful at controlling my spasms for at least 5-6 months.
For those of you without access to insurance coverage for Botox, the makers of one strain of Botox, Allergan, will under certain circumstances, donate the botox itself. They won't pay for the procedure.
I usually have to self-cath for short period of time (several weeks) afterwards, but that is small price to pay for months of being dry. Other than that I have had no problems with it.
Just thought I would pass this along.
I have had botox injections three times over the last year or so for urge incontinence cause by some surgery. All three times it has been successful at controlling my spasms for at least 5-6 months.
For those of you without access to insurance coverage for Botox, the makers of one strain of Botox, Allergan, will under certain circumstances, donate the botox itself. They won't pay for the procedure.
I usually have to self-cath for short period of time (several weeks) afterwards, but that is small price to pay for months of being dry. Other than that I have had no problems with it.
Just thought I would pass this along.
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