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Hernia with stoma?

12 years 3 months ago #6201 by Cynthia

Elsie,

Isn't this just the most fun you can have without shooting yourself? I have been in a situation where the doctors did not always serve me as much as the brotherhood personally. So I can understand your fustration. Wendy wrote and asked me if I still had a list of Uro. surgeons she had sent me some time ago but I can not find it. But off the top of my head here goes. I would personally highly recommend any of the following the first two saw me knowing I had been with another Uro surgeon and were willing to except me as a patiant. If this does not fill your need email me directly at This email address is being protected from spambots. You need JavaScript enabled to view it. and I will send out some emails for you and see what we can do.

Gary D. Steinberg, M.D., F.A.C.S.
http://siss10.bsd.uchicago.edu/common/bio.cfm?staffid=gsteinbe

This is the surgeon I used for my RC, he specializes in salvage RC following radiation amoung other things. Give him a problems and he is happy. He and I get along very well he will answer questions by email and really cares. I have heard people say he has no bedside manner but I adore him. He does three to five RCs a week and knows his buisness.

Mark Schoenberg, M.D.
http://pathology2.jhu.edu/bladder_cancer/doc_profile.CFM?
person=schoenberg&grp=1&ref=study

He is a wonderful human being and one of the top in the country. He will also answer questions by email. He is the author of one of the best books on blc I have ever seen.

Cheryl T. Lee, M.D.
http://www.med.umich.edu/urology/Staff/lee.htm

Dr. Lee is one of the few female Uro surgeons to be found in the US. She is entusiastic knowlegable and careing. She is concerned with the situations woman with blc face. She is considered an up and commer in this field. She was also elected as the Bladder Cancer Advocacy Networks chiarperson of its medical advaisory board.

Good luck and let us know how things go.

Cynthia

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 3 months ago #6200 by elsie2
Thank You for the two tips on doctors. I will try to investigate more and would be grateful for any further ideas.
elsie

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12 years 3 months ago #6197 by wendy
From what I've heard from women who've needed to be re-operated upon or who had tough cases such as previous pelvic radiation, the best uro-surgeons for women are John Stein at USC/Norris and Mark Schoenberg at Johns Hopkins. I will ask for more names, but if you are able to have a consult with either of these experts it would be a good place to try and start.

Best,
Wendy

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12 years 3 months ago #6177 by elsie2
Dear Wendy:
I have been at the Univ. of Michigan...nothing but trouble. I then went to Karamanos and felt confident and cared for ...but when they found the surgery mishap they sent me back to UM where I had 2 stoma revisions.
No one at UM offers me any hope...even though I have not had any cancer re-currences at this time. They seem very embarrassed and attribute my problems to chemo allergy, etc. I think they are afraid I will sue them, and so they say nothing.
I will travel ANYWHERE for someone who can fix my problem. The stoma has not leaked in a while..but the hernia is making it larger which I think will be a serious problem in the future. Only the nurses have helped me and they are the ones who alerted doctors to the various problems, e.g.; leakage, hernia, etc. Any suggestions? Elsie2

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12 years 3 months ago #6163 by wendy
Elsie, where are you located, and will your insurance support your moving to a university hospital, or out of state to an institution of excellence? You need a good surgeon not afraid of the challenge. Maybe we could help with a referral.

Best,
Wendy

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12 years 3 months ago #6130 by Patricia
Elsie....i'm assuming you have an ileal conduit? What part of the country are you in? Unfortunately there are a lot of doctors who don't want to mess with someone elses mishap...i've had it happen to me with a botched mis-carriage. I'm sure we can get you to someone who can figure out this repair......i hope so.......Pat

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