Quote from: Flan on February 10, 2014, 12:24:03 AM
So nothing has happened in the months since you first posted here? No consults with other doctors, no corrective surgery, just blame somebody? The problem is a fistula could happen to any surgeon and it's happened to Dr Bowers on a patient and the result was the same as here: Bowers couldn't correct it herself; that's where the team is to help their patients. http://www.thescavenger.net/queer/when-sex-realignment-surgery-goes-wrong-93746.html
Between the hospital Reed has privileges in (Mount Sinai Medical Center) and University Miami hospital there has to be a place that can treat the problem.
First of all, I would like to state that for the first time this is the actual daughter of the woman (my Mom) who started posting on this site, for my sake when I was too far gone in my despair, to search for answers, seek justice, and protect those like myself. The unfortunately small and outcast group of beautiful human beings who for some unknown reason were subjected to a life of hardship and pain for just being who they were meant to be. My name is Evee (short for Evangeline, off subject but I let my Mom rename me at 18, just to show you how much we love each other), and let me first be very clear to avoid some confusion people are having. I am not writing this out of misplaced rage at a doctor for a recognized surgical risk and I am not writing this to slander his name without probable cause. I write this so that person, so full of hope in a new life like I was, will not make the same mistakes, miss the obvious signs, and trust the wrong people. I wouldn't wish my outcome in this life on my worst enemy, and that is why I hope that person who is ready to take the next step in the transition journey does their research, questions these doctors, and seeks the very best no matter the wait or cost. I wish I would have. Secondly, to address the admin Flan's question, much has happened in the way of surgeries, misdiagnosis, and failures being that my Mom stated 5 surgeries total in her first post on July 25th, 2013 and now the total is 8. I'm sorry this is so long, but to clarify I think I need to start from the beginning. I had my SRS surgery at age 19 in 2009 with Dr. Reed. He created a fistula at that time. Due to the fistula, he said to stay on a liquid diet for two weeks, and that would heal it as he claimed it was extremely small. I was given normal dilation instructions, despite the fistula. However, I started experiencing symptoms such as gas and feces out the vagina, so I was too afraid to dilate more than the just the tip. My next follow up visit with him (at 4 weeks) I expressed to him my symptoms. He did a physical exam of the vagina and rectum and said there was no fistula and dissmissed me despite my concerns (I know now that small to pinhole size fistulae cannot be detected with just a physical exam). My symptoms still remained and I was so young and scared at the time that I stopped trying to dilate out of fear. Eventually, the vagina closed down and the symptoms went away (along with my vaginal depth). After three years, I got the courage to go back to him to see if the depth could be restored. This was very difficult because I was so traumatized by my first experience. Unfortunately money and location (I live in Florida) are the reasons I went back to Dr. Reed (which I now know were not worth the consequences). I was terrified of getting another fistula, so after several discussions in his office of the possibility of a fistula, he assured me that because of the time that had passed since the initial SRS (he said now that I had a vagina for some time that the rectum would be lower or more seperate than before), my height (I'm 5' 10" and he claimed that was excellent because he would have more ample room for greater depth creation), and because someday I would meet "Mr. Right" and would want to be a complete woman (his words, not mine), he told me not to be concerned about a fistula, that the biggest risk was bleeding out on the table. Long story short, another fistula. This time, three fingers wide (didn't find that out until I was in the hospital and getting fitted with a colostomy bag). My mom later told me she was terrified because he called her into his office after the surgery and he told her he "nicked" me. My mom said "I'm scared" and he told her "you should be!" (He has great bed side manner, btw.) Liquid diet again, of course. On the 7 day follow-up visit, he took the packing out and said it looked fine. The NEXT day, I had profuse and uncontrollable diarrhea out my vagina everywhere I went (i.e. in bed, walking around, in the shower, I essentially had absolutely no control over my bowels). We drove back to Dr. Reed, and he said we needed to be checked into the hospital (Mt. Sinai) and have a temporary diverting colostomy put it. I spent three days in a hospital bed and I had diarrhea coming out so often that my inner thighs were actually burned and peeling. Finally they (the vascular surgeon that Dr. Reed referred me to) put in the colostomy. After 6 days in the hospital, I went home on a bag attached to a huge hole in my abdomen. At this point, Dr. Reed instructed me to continue the dilatation despite the fistula (another stupid mistake I now know). Dr. Reed told me I would be on the colostomy for only three months max (using the example of another paitient he had done this to in the past fyi), and that it was imperative to continue dilation. Per his instructions, I followed up with him every few weeks (physically saw him and was examined by him) to make sure I was strictly adhering to his advice and that the dilation was being done correctly, as I trusted him. He assured me it was. After three months, full of happy expectation that all was well (since I still had my vaginal depth) trying to convince myself that this was only a minor set back, he told me that the fistula was not healed at all. Dr. Reed then instructed me that the best course of action was to have the same vascular surgeon (who would from this point on actually become my treating doctor) perform a fistula repair surgery. He also wanted me to go up in dilator size every week to the largest one so the vagina would be as big as possible so that after the fistula repair surgery I now needed, the vagina would not close down. This was when I finally questioned whether this was smart, as I knew it would stretch the fistula as well and I didnt want to make it bigger and in turn make an already hard to close hole become a hole so big a permenant colostomy would be required (when I asked Dr. Reed of this he of course wouldnt commit to an answer). I decided against this, thankfully. I think if I had done that, I might still be on the colostomy, possibly forever. When we told Dr. Reed we did not want to follow that course of action, he basically dropped out of the picture, despite the surgeon's updates to Dr. Reed regarding my case e-mails sent to him went unanswered. This was the start of five skin flap advancement surgeries (October 2012 to July 2013) that succeded in making the fistula a little smaller each painful time. In July, 2013, the surgeon finally told me it was closed and assured me that during the colostomy reversal surgery there were full proof dye tests to be sure it was closed. Unfortunately, although the surgeon assured us all was well I knew it was not after my first meal in the hospital post-op. I was in the hospital three days that time, but knew it had failed because gas passed uncontrollably through the vagina. I had yet another surgery last week, February 3rd, that I fear is already failing. Btw, we also consulted with a UM doctor, Dr. Sands, a colo-rectal surgeon in the middle of these five procedures, as we began to lose faith with the vascular surgeon Dr. Reed referred me to. However. Dr. Sands suggested the gracilis muscle flap surgery (research it, it's terrifying) and he openly said he was not familiar with TG anatomy so he wasn't confident in doing any procedure on me, where as my surgeon had fixed at least three (that he told me of) of Dr. Reed's fistulas successfully before so we went back to the original surgeon. The bottom line is that Dr. Reed washed his hands of me and has no understanding of the damage he has done to my life. He has made no attempts to contact me in over a year, he never even offered to refund the cost of the destructive surgery that has ruined me not only physically, but financially as well. Dr. Reed makes you sign many papers to protect himself legally obviously, so you dont have a leg to stand on legally. Which is all too common and unfair in our risky procedures, unfortunately. Of course, with all the flap advancement surgeries, I have totally lost vaginal depth. At this point, I just want the fistula closed so I can live as normal a life as possible. I offer my story as a warning to those seeking surgery options. Obviously, some of his surgeries are successful. But, even on this site, you can read stories where they were not. Frankly, Teela, I'm quite shocked that you would defend a doctor with a $5,000 arbitration clause for you to sign (to scare you from suing) and no malpractice insurance over a fellow TG person trying to get a small scrap of justice and keep others from making the same mistakes.
