Re: Need advice on bladder operation

From: Wally (
Thu Feb 22 15:56:06 2001


I hope that your surgery goes well, and that yes, your quality of life could improve. I had a dreadful night last night, got very little sleep at all. I've had a very big week working in my business, and now I pay the price......but I don't give up, I work around it. Being my own boss gives me some flexibilty, so I know if I have a few "busy" days in the office or with clients, that the next two or three days are just blocked out in my diary.

I haven't ruled out surgery either, and continue to read, seek & ask! :-)

Warm hugs to all of you with surgery on your agenda in the coming months, and of-course to you Karla,

Best wishes, Wally

At Thu, 22 Feb 2001, Karla wrote: >
>I totally agree with your message "Seek, read, ask .......Karla make an
>INFORMED decision before you have surgery." Everyone needs to heed this
>message. I had complete faith in my doctors....only to learn that they had
>made mistake after mistake. Unfortunately, I have to have the surgeries
>that I am about to undergo. The reality of the situation is that without
>the surgery I will die.....and at the same time the surgery could very well
>kill me. This is a decision that I made very easily.....knowing that I
>could not continue to live my life as it is now. I would rather take the
>chance at putting some quality back into my life then sitting here in the
>pain and humility that I am in.
>In my case, I tried seeking out the doctors that I sought were the best. I
>have been to Boston, Johns Hopkins in Baltimore, the University of
>Wisconsin, Mayo Clinic, and back again to the doctors that had become the
>butchers. Not one of them was willing to do anything. It was a desperate,
>last ditch effort to contact a doctor that had treated me early on that led
>me to find Dr. Zachary at the University of Chicago. I consider it to have
>been a miracle. Dr. Zachary is well known for his microsurgery and his
>skills with his hands. However, somewhere around 1995 he was involved in a
>serious car accident and suffered from a severe brain injury. Miraculously
>he still maintained all the skills necessary to perform the most complex of
>surgeries. While he has difficulty communicating with his patients he does
>find a way to get his point across. It was he that said that "I made him
>shit in his pants" (his exact words) when I suffered the respiratory and
>cardiac arrest prior to being anesthetized in July. While I have found the
>wait to attempt the surgery most untolerable, I know that this doctor has
>only my best interests at heart. He has sent me to see any and every doctor
>that could possibly be involved. He has established a team of 10 doctors
>that will be involved in my surgeries. These physicians meet once a month
>to prepare for the upcoming surgery. I know that they will be prepared for
>anything. While you can never be assured that something will not happen, I
>rest easy now....knowing that they are working for me.
>To everyone getting ready for surgery......please research your
>options.....for those of us that need adhesiolysis going to doctors that do
>not have the proper skills only adds to our problems. Seek out a doctor
>that can get it done in 1 most 2. Realistically we will
>probably never be "pain free". But, it is possible to improve the quality
>of our lives.

>>----- Original Message -----
>From: "Wally" <>
>To: "Multiple recipients of list ADHESIONS" <>
>Sent: Thursday, February 22, 2001 4:30 AM
>Subject: Re: Need advice on bladder operation
>> Hi Karla,
>> I agree about looking for alternatives before surgery. One of my
>> specialists had me on Ditropan, horrible horrible stuff, it absolutley
>> screwed my concentration. I actually totally lost the plot during an
>> important business presentation!!! Needless to say, I do without
>> ditropan. Since starting on the herbals (read previous messages this
>> month for more info), my bladder problems have been improved. I suffer
>> from a lot of pain, diminished capacity, self catherterisation (LOL
>> sorry I hate spelling medical stuff!). It does't hurt as much to empty
>> my bladder now, and the massage tecnique for my kidneys has made a
>> difference there.
>> It is still early days for this treatment, but as I keep saying I'm
>> going to give it a bloody good go!! (sorry I'm an Aussie.....swearing
>> just adds weight to my conviction...)
>> Seek, read, ask .......Karla make an INFORMED decision before you have
>> surgery.
>> Best Wishes,
>> Wally
>> At Thu, 22 Feb 2001, Helen Gibson wrote:
>> >
>> >Dear Karla,
>> >
>> >Thanks for reply to my posting, I really don't know what to do after
>reading your story.
>> >My last op they did remove adhesions from around the bladder, also my
>intestines and ovaries were stuck to it too.
>> >My urologist does'nt seem to think it's adhesions causing the urge
>incontince, he thinks that I have nerve damage and he said that my bladder
>has shrunk.
>> >
>> >I really think that my options are limited to what can be done for my
>> >I can not have this op and pray that my kidneys won't pack it in, I can
>stay on the medicaiton (ditropan) which has really bad side effects for me
>and I still have leakage, or I can have the operation and pray to gad that
>it will work and not cause more problems than what I started with.
>> >I only have 13 days until my surgery is scheduled and the decision just
>seems to be getting harder to make.
>> >anyway thanks for everything.
>> >
>> >Love
>> >
>> >Helen G

>>> > ----- Original Message -----
>> > From: Karla
>> > To: Multiple recipients of list ADHESIONS
>> > Sent: Sunday, February 18, 2001 8:50 AM
>> > Subject: Re: Need advice on bladder operation
>> >
>> > Helen,
>> >
>> > I just got the opportunity to read this message. I have had tremendous
>problems with my bladder due to ARD. While I have not had the particular
>surgery you are discussing I would strongly suggest that you NOT proceed
>with the surgery until you investigate it further. I myself went through
>the bladder augmentation procedures twice. Knowing what I know now....if
>they had taken care of the adhesions instead of messing with the bladder I
>might still have a bladder. I might have not undergone 26 laparotomies
>since 1991 and I might not need the two major surgical procedures that I
>need soon. I also might not have come so extremely close to dying this past
>> >
>> > Doctors will tell you anything other than the fact that adhesions can
>and do regularly cause bladder problems and that by taking care of the
>adhesions you can eliminate the need to mess with your bladder. They make
>their money by doing these surgeries...heck if I had just had my adhesions
>properly taken care of I wouldn't have paid my surgeon's entire retirement
>> >
>> > Please really consider what you are about to do. Feel free to contact
>> >
>> > Karla

>>> > ----- Original Message -----
>> > From: Helen Gibson
>> > To: Multiple recipients of list ADHESIONS
>> > Sent: Saturday, February 10, 2001 2:11 AM
>> > Subject: Need advice on bladder operation
>> >
>> > Hi to everyone,
>> >
>> > I just wanted to ask if anyone has had major bladder problems with
>> >
>> > I have been suffering from urge incontience/unstable bladder and now
>my Urologist says that my final option is to have a operaiton called a
>Bladder Auto-Augmentation/ Detrusor Myectomy.
>> > The process is they go vaginally and slice the detrusor muscle to
>stop the bladder from contracting so much, thats the basics of it anyway.
>This operation is not to be confused with the larger op of bladder
>augmentation, where they removal part of the intestines to build a new
>portion of the bladder, but that my be what they will have to do if this op
>does'nt work, apparently the op that I am having onlly has a 50/50 chance of
>working or stoping the bladder contractions.
>> > Anyway I was wondering if anybody out there has had the op that I'm
>going to have or knows of anybody that has had this operation.
>> > The benefits of this operation is that they don't have to open you up
>and my adhesions won't be affected ( I hope!).
>> > My operation is booked in for the 6th march and I am trying to find
>out as much about it as possible. I've read a fair bit on the net about it,
>but there are varying opinons about it's success rate for unstable bladders
>like mine.
>> >
>> > On a different note, Toni I know what you mean about your husband
>switching off, When I told my husband, Mark that I would have to go in for
>bladder surgery he went really quiet and did'nt know what to say. He hates
>to see me the way I am and does'nt know how to deal with it anymore, He's a
>great guy and we love each other deeply, he just feels really useless with
>the way my health is. I know he cares, it's just his way of dealing with it.
>> >
>> > Love
>> >
>> > Helen G
>> --
>> You will never never know.......if you don't give it a go :)

You will never never know.......if you don't give it a go :)

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