I had the mitrafanoff with my appendix but that doesn't change my issue with
my bladder. I have not had augmentation done. luckily but the botox
treatment I had has helped my spasms for more than a year eventhough they
commented that it would only last 6 months.



The doctors didn't want me to have a hysterectomy due to the risk of hitting
anything to do with the mitrofanoff. They felt the oblation would be less
risky. If it works then such invasive surgery would be needed. There have
been significant improvements. I have had a little spotting but it is so
much easier.



Have a great day!

Monica

----------------------------------------
Be the change you want to see in the world. -- Mahatma Gandhi

_____

From: womenwithsci@yahoogroups.com [mailto:womenwithsci@yahoogroups.com] On
Behalf Of mary cooper
Sent: Thursday, September 04, 2008 2:41 PM
To: womenwithsci@yahoogroups.com
Subject: Re: [Women with SCI] woman issues



Hi,
thanks for the info. I have also had bladder augmentation surgery. I have
spoken to my urologist about a botox injction. He said that because they
attached my appendix to my bladder, in the augmentation surgery, Botox will
not have any effect on it. So, it will not help my spasms. Do you have
either part of you intestine or appendex attached to your bladder (from that
surgey)?
My gyn suggested the oblation procedure. This is an option I will be
looking into.
Why having the mitroff surgery are you not able to have the hysterectomy?
Just wondering about that. Have not heard of this as a contraindication
before.

Thanks
mary

----- Original Message ----
From: Monica KamalRossa <xena-rolls@charter.
<mailto:xena-rolls%40charter.net> net>
To: womenwithsci@ <mailto:womenwithsci%40yahoogroups.com> yahoogroups.com
Cc: Dziegler222@ <mailto:Dziegler222%40aol.com> aol.com; Sandy Young
<youngsandradee63@ <mailto:youngsandradee63%40yahoo.com> yahoo.com>
Sent: Thursday, September 4, 2008 10:24:51 AM
Subject: RE: [Women with SCI] woman issues

Hi Mary,

I had been having horrible bleeding. I was wearing thick pads for months
and bleeding through. It was embarrassing. I was seeing different docs to
determine what to do. Hysterectomy or there were 2 other procedures? I
finally had the uterine oblation procedure. This has decreased my bleeding
significantly as they did not want to do a hysterectomy for a variety of
reasons:

1. they thought it was too risky as I have had the mitrofanoff (ability to
cath via my belly button)

2. they thought I was premenapausal due to my age and didn't want me on
hormones.

Additionally, your bladder spasms could possibly be helped with botox. I had
a botox treatment on my uterine wall and it decreased by spasms
significantly.

Recently there was an article in the following online web site:
www.peopleonwheels. com <http://www.peopleon wheels.com/>

This is part of the article-

Urologists inject Botox in the bladder, relaxing the bladder muscle which
relieves leakage and back up of urine into the kidneys and can replace the
need for oral medications that lead to dry mouth and other reactions. Many
who have used it say the results are unbelievable.
Allergan, the developer of Botox, is now setting up study sites to prove to
the insurance companies how well it works.
According to Steve Winter, an activist attorney who fought and won the
'single use catheter' fight with Medicare, any spinal cord injured patient
or MS patient who uses a catheter and passes a screening test can get the
Botox FREE along with all the tests paid for as well and money for their
time. Call this toll free number( 1-888- 617-8839) and check out this site:
www.dignitytoos
<http://rs6.net/ tn.jsp?e= 001hJjGfxS_ -YTyi2tWkZaJdU1c qVStjnjbir_
3LGbOMmqBIdQa
QKg2fdj-RtuqxFB1nbi wit1M9DlraF9foLD sKO7NDvJ3xSIif5o l0FlbVWfjYJNLImb
WAQ==>
tudy.com to see if you can take part in the study.
This use of Botox is called a "chemical sphincterotomy" . It essentially
relaxes the urinary sphincter for six to nine months, allowing men to switch
from intermittent cathing to an external catheter that empties into a
legbag.
This might be preferred because it would 1) reduce UTIs and the long-term
damage they cause, 2) address chronic leaking between intermittent cathing,
3) protect your kidneys by reducing reflux and 4) allow you to ditch your
anti-cholinergic meds and the nasty side effects (including dry mouth,
blurred vision, constipation, thermoregulation problems, and confusion) that
go with them.
For others, it may be more about time management or addressing hygiene
issues in difficult environments.
For quads, it's an alternative that may make more sense than having a
caregiver perform intermittent catheterization or than living with an
indwelling catheter, whether it's urethral or suprapubic.
Check out the Bladder Matters conversation with Bob Vogel at the New
Mobility Web site for more!

<http://rs6.net/ tn.jsp?e= 001hJjGfxS_ -YS89G1IZq59jbVo jgVrvaxGvMwn-
XyYhZlvgpj1
NwCskpYpumLLQOGaYt5 kmXPaYrpba47AZmG K0iWRYwRWXU6HWp3 M2m3XX6AXdlH_
z8gHMpNGyizQ
9TU2NK5FI6X_ XnilO40MllFIQAcS W9aeGv18> Read More!

You may want to do both.

Have a great day!

Monica
<http://www.rossadig italdesign. com/> www.RossaDigitalDes ign.com
Madison's Spinal Cord Injury Group Coordinator
<http://www.SCI- Madison.org> www.SCI-Madison. org
------------ --------- --------- --------- -
Be the change you want to see in the world. -- Mahatma Gandhi

_____

From: womenwithsci@ yahoogroups. com [mailto:womenwithsci@ yahoogroups. com]
On
Behalf Of mmchmc1
Sent: Wednesday, September 03, 2008 11:57 AM
To: womenwithsci@ yahoogroups. com
Subject: [Women with SCI] woman issues

Hi,
I'm a T-10 complete. I am almost 8 years post injury. I am looking
for women who are having GYN problems. Being complete, I can not tell
when my period (the curse) is coming. I am not regular. However my
bladdre spasms and I become incontinent. My urologist recommends a
hysterectomy. My GYN does not. Really tired of having a period and
would not mind not having one. They say that I am several years away
from menopause. Psychologically I can not deal with the incontinence.
Any one else with this problem, suggestions or anything?
mary

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