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Old 06-19-2010, 05:23 PM   #1
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Julie45209 HB User
Unhappy Spina Bifida/Bladder Incontinence

Hello-

This is my first post here on this site, so if this is not the correct board, let me know. My boyfriend, 43, has spina bifida. He has always leaked urine, but since he had a cystoscopy 1 month ago it has become much worse. During this procedure, the MD discovered he has a narrow urerthra and decided to "open" it up. He goes through about 4-6 pads per day.

During his last visit to the uro 9 days ago, he told him of his increased leakage. He was put on Vesicare 5mg 1x/day. It's not working. He did mention the possibility of surgery for a sacral stimulator if the Vesicare doesnt help.

He has looked into catheterization but its too painful for him.

Does anyone know if there are any other options/treatments/meds?

Thank you for your time.

 
Old 06-21-2010, 09:06 PM   #2
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KellyCz HB User
Re: Spina Bifida/Bladder Incontinence

Hi there,
I am 27, and have cerebral palsy and a neurogenic bladder. I leak urine quite often, multiple times throughout the day. I have to wear a full adult diaper all the time.

There are many medications available for urinary incontinence...There is of course vesicare, Detrol LA is another one, which I took for 7 years or more off and on, There's Ditropan, Enablex, Toviaz, and I am sure I am missing a few.

I ran into a lady in a pharmacy who saw that I was buying diapers who has the interstim implant (the "stimulator" I think you are referring to) and said she is now diaper free. I am not a candidate for the stimulator that I know of (I have gotten literature on it, but my urologist doesn't think it will work for me.) However, this lady I ran into says it has changed her life.

One thing my urologist has talked of trying in the past is botox injections into my bladder, as well. Good luck!
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Old 06-22-2010, 02:44 PM   #3
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Julie45209 HB User
Re: Spina Bifida/Bladder Incontinence

Quote:
Originally Posted by KellyCz View Post
Hi there,
I am 27, and have cerebral palsy and a neurogenic bladder. I leak urine quite often, multiple times throughout the day. I have to wear a full adult diaper all the time.

There are many medications available for urinary incontinence...There is of course vesicare, Detrol LA is another one, which I took for 7 years or more off and on, There's Ditropan, Enablex, Toviaz, and I am sure I am missing a few.

I ran into a lady in a pharmacy who saw that I was buying diapers who has the interstim implant (the "stimulator" I think you are referring to) and said she is now diaper free. I am not a candidate for the stimulator that I know of (I have gotten literature on it, but my urologist doesn't think it will work for me.) However, this lady I ran into says it has changed her life.

One thing my urologist has talked of trying in the past is botox injections into my bladder, as well. Good luck!

Hi Kelly-

Thank you so much for your response. He is going back to the uro on Thursday to discuss other options since the Vesicare isnt working.

My daughter who passed away last year (from kidney failure) also had cerebral palsy and she too had neurogenic bladder. She had to be cath'd a few times a day. You mentioned the Botox injections for bladder. I didnt know that was another treatment. She got Botox injections too, but it was for the spasticity in her legs and arms.

Thank you again for responding. I will have him mention the other meds you suggested.

Hope you are well.

 
Old 06-23-2010, 11:19 AM   #4
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KellyCz HB User
Re: Spina Bifida/Bladder Incontinence

Quote:
Originally Posted by Julie45209 View Post
Hi Kelly-

Thank you so much for your response. He is going back to the uro on Thursday to discuss other options since the Vesicare isnt working.

My daughter who passed away last year (from kidney failure) also had cerebral palsy and she too had neurogenic bladder. She had to be cath'd a few times a day. You mentioned the Botox injections for bladder. I didnt know that was another treatment. She got Botox injections too, but it was for the spasticity in her legs and arms.

Thank you again for responding. I will have him mention the other meds you suggested.

Hope you are well.
Julie,
Not a problem, glad I could help. Trying OAB meds is really trial and error. There are so many other options in that class of medications, that just because the first one did not work does not mean that another won't.

The botox to the bladder is still considered experimental. I am on monthly social security and therefore have medicare. So, medicare would not pay at the time she wanted to try it. But, you can also get botox as a treatment for migraines...which I would pay for out of pocket too. (I also suffer from debilitating migraine headaches.) Botox can be used to treat more than spasticity of the limbs. But, I may send you a private message about the botox for spasticity as I am considering it as a treatment for mine.
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Old 06-23-2010, 03:07 PM   #5
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Julie45209 HB User
Re: Spina Bifida/Bladder Incontinence

ok, thats fine. My daughter had to get hers about every 6 months.

 
Old 07-06-2010, 07:48 PM   #6
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Dolphin43 HB User
Re: Spina Bifida/Bladder Incontinence

[QUOTE=Julie45209;4272178]ok, thats fine. My daughter had to get hers about every 6 months.[/QUOTE]

hi julie

I have neurogenic bladder and o.a.b. also I have had Botox
today for second time which lasted ten weeks hope it lasts
longer this time as it really helps me cope with the above
why dud u say that incontinence is spina bifida is it cus of
nerve problem ect I read of it being called that before but
don't know it's correct. Sorry to hear about your daughter
do u mind me asking what the circumstances were for her
condition.

all the best.

dolphin43.

 
Old 07-11-2010, 06:59 AM   #7
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Julie45209 HB User
Re: Spina Bifida/Bladder Incontinence

Quote:
Originally Posted by Dolphin43 View Post
[QUOTE=Julie45209;4272178]ok, thats fine. My daughter had to get hers about every 6 months.
hi julie

I have neurogenic bladder and o.a.b. also I have had Botox
today for second time which lasted ten weeks hope it lasts
longer this time as it really helps me cope with the above
why dud u say that incontinence is spina bifida is it cus of
nerve problem ect I read of it being called that before but
don't know it's correct. Sorry to hear about your daughter
do u mind me asking what the circumstances were for her
condition.

all the best.

dolphin43.[/QUOTE]

Hi Dolphin43-

My boyfriends is from neurogenic bladder, which I believe is from the spina bifida. He has tried cath'ing which is very painful. The Vesicare didnt do anything for him. He is looking into the sacral nerve stimulator but so far insurance isnt approving it.

My daughter had cerebral palsy, kidney and liver failure all as a result of a difficult birth with hypoxia. She was on Hospice as a newborn and survived. She wasnt expected to live longer than a year, but she lived to be 12! She was also on Hospice when she was 10, but came out of that too. Her death was expected but was still sudden. She wasnt a candidate for transplant or dialysis since infection risk was too great. She was a happy beautiful girl. She never spoke a word (due to the CP) but taught me and others so much.

 
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