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 procedure....at most 2. Realistically we will probably never be "pain free". But, it is possible to improve the quality of our lives.
-- Karla
>----- Original Message ----- From: "Wally" <wallamara@hotmail.com> To: "Multiple recipients of list ADHESIONS" <adhesions@forum.obgyn.net> 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 situation. > >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 July. > > > > 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 plan! > > > > Please really consider what you are about to do. Feel free to contact me. > > > > 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 ARD. > > > > 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 :) >