From: Chuck Butman (
Wed May 24 20:34:40 2000

I can't believe it! I have been serching for so long to find another person with a neuroma! It is the absolute worst thing on earth. I have had 2 surgries now to get it out. I was absolutely disfunctional for 5 months following my vaginal hysterectomy. I couldn't find anyone with experience with this thing. They tried to lie to me and tell me that it is all in my head. Nothing worked at all. Finally, I had a doctor go in with a scope to remove it and he totally messed up. He found millions of adhesions and tubes were left behind and stuck everywhere. So he removed the tubes, adhesions, and took a mass off the top of the vaginal wall where the nerve was stuck. After that I hemmorrhaged and had to have a laparotomy to stop the bleeding. Six weeks later the nerve pain came back, but this time it was tolerable with high doses of meds. I tried to sue but a neuroma is a risk of surgery and I could not find an expert witness. I lived on Methadone and Neurontin( a life saver) for 2 years until my trip to Germany in March. It has been about 11 weeks now and the nerve is back again but only about a third of what it was. The adhesion are finally gone with the Intergel but the nerve pain is still there. I feel like a new person now as I can do so much more now. I hope that someday, I will become completely free of it. I will not be ready for any more surgeries for a few years. Please let me know what they are doing for you. Maybe you will get better care than I did. It is also called scar tissue. Keep in touch. Joanne

>----- Original Message -----
From: Vivien siviter <> To: Multiple recipients of list ADHESIONS <> Sent: Monday, May 22, 2000 12:21 PM Subject: Update:Waiting for a diagnosis

> Thought I would update you on my latest hospital visit. I have had
> another suggestion from the surgeon. A nerve had been sewn into my
> hysterecty scar!!!!!! (It was over 4 months after the operation that I
> started getting the problems)Thats another new one on me. The
> consultant will not now discuss the possibility of adhesions although my
> GP and Occupational Health doctor thought that adhesions was the prime
> candidate. The consultant will not do a laparoscopy to have a look and
> he wants me to go to a pain consultant for freezing of the nerve and
> there is a 4 1/2 month waiting list.
> I have asked to see him again as there are more questions that I want to
> ask and he hasn't convinced me that this is the total answer I see him
> again on the 2nd June (just another few weeks). At this speed I will
> have lost my job before they finally decide what is wrong. I have lost
> any faith I had in the NHS and am sick to death of them messing me
> about. I am seriously considering a formal complaint now.
> Thanks to those of you who responded to my message
> Viv Siviter
> --
> Viv

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