Medical butchery

May 18, 2009 6:11 PM

Need no or low cost reconstructive surgery for friend who had a radical vulvectomy

My friend 43 yrs. old had radiation and a complete removal of all her sex organs. The doctor butchered her, and we cannot find a doctor that will take on any kind of reconstruction for free or reduced price. She has been left with a gaping gash for privates and a tube just hanging out of where her urethra/clitoris was, and a colostomy bag. We thought of her going to see a transsexual specialist but again, she has no medical insurance. Does anyone know of any resources she can utilize for this rare and devistating procedure? We wrote to Dr. Kevin Brenner in LA and he could not do it, yet he repairs female circumcisions all the time, I guess this was too much for too little benefit to his practice.

posted by ~Sushma~ to health & fitness (16 answers total)

Where is your friend located?
posted by scody at 6:18 PM on May 18, 2009

Rural Virginia.
posted by ~Sushma~ at 6:20 PM on May 18, 2009

How about a malpractice lawyer? That might help with affording the reconstruction.
posted by Maias at 6:25 PM on May 18, 2009 [6 favorites]

Can you clarify a few things?

I assume when you say 'colostomy bag' she hasn't actually had a colostomy, but rather this is just to collect urine, right? Cause obviously it makes a difference if she has additional problems.

How much can she afford?

What kind of function/cosmesis is she looking for?
posted by Sova at 6:27 PM on May 18, 2009

In googling, I found Dr. Marci Bowers, who performs gender reassignment surgery in Trinidad, CO, but has also evidently done reconstructive work for women in Africa who have suffered genital mutilation. Perhaps she would work on a sliding fee or would be able to refer you to other surgeons who might.
posted by scody at 6:44 PM on May 18, 2009

How did this happen? Were the organs removed because of cancer or another health condition? If it was a cancer of the female reproductive system, I would contact the Gynecologic Cancer Foundation 1-800-444-4441, or the American Cancer Society 1-800-227-2345. One or both of those groups should be able to let her know if they are aware of any resources that can help her get surgery.
posted by ishotjr at 6:52 PM on May 18, 2009

Just from your description of what the original doctor did, your friend needs to see a malpractice attorney. What he left her with has got to be well below the accepted standard of care for whatever required the surgery/butchering.

IAAL, IANY/YFL.
posted by LOLAttorney2009 at 7:04 PM on May 18, 2009

She had earlier cervical cancer that spread into her bowel, vulva and clitoris. They took everything out, and only left her with two large flaps with a tube hanging down to urinate. They cut from knee to knee to harvest tissue.

The only attorney she could find to assist her had a massive heart attack and she has been unable to find another one that is not afraid of the institution she had the surgery at.

As far as function, she would like to have some nerve regeneration (she has complete numbness and is unable to control her urination) and some kind of function to have sex with her partner, and of course feel halfway feminine.

The worst part is they left her ovaries in and she has a feeling it has invaded them as well. She is pretty much financially tapped out as she still owes the hospital $300,000.
posted by ~Sushma~ at 7:09 PM on May 18, 2009

Wow, that is horrendous. Can someone pay for an initial consult with a top surgeon doctor? That would only be a few hundred dollars and Medicare might cover some of it. At least then she might know what her options were. It would likely really help with getting a lawyer too.
posted by fshgrl at 8:02 PM on May 18, 2009

This is a small town, where every doctor and every lawyer have silent agreements. We have written to Dr. Phil, Tyra Banks, and other public venues and nothing. The lawyers around here will not take on her case. Also, there is culpability on her part as she waited a year before getting treatment because of money issues. She is not eligible for health care or Medicare/Medicade.
posted by ~Sushma~ at 3:31 AM on May 19, 2009

We have written to Dr. Phil, Tyra Banks, and other public venues and nothing.

I'm not sure why you'd think Dr. Phil would see this as relevant to him or his show. Oprah, maybe, but this sounds so horrific that public figures may be at a loss for how to even talk about it publicly.

This is a small town, where every doctor and every lawyer have silent agreements.

The only attorney she could find to assist her had a massive heart attack and she has been unable to find another one that is not afraid of the institution she had the surgery at.

Well then, you need to get her the heck out of her small town long enough and far enough to talk to someone who has nothing to do with the institution that everyone's so scared of. There's no place in Virginia that isn't within a day's drive of multiple major medical centers. Make an appointment and get her to one of them. It probably won't be free, but it will be a drop in the bucket compared to what's already been invested in her.

I would concentrate on learning what's medically possible and appropriate before seeking out a lawyer. "They mangled me and I want someone to fix it" is an understandable emotional response, but it's not going to get anything done. Start lining up your ducks.
posted by jon1270 at 4:18 AM on May 19, 2009

If your friend is 300,000 dollars in debt because of this, it is possible her best option is to declare bankruptcy and if at all possible become eligible for Medicaid. If that can be done, there are a number of academic medical centers in VA that would be likely to accept her as a patient and give her access to top surgeons.

As horrific as her outcome sounds, I have seen enough radical cancer surgeries to know that although butchery is an accurate way to describe it, it is also the best or only option sometimes. Severe infections can have the same results. We have a girl at our hospital who is in a similar situation but fortunately we are able to provide the reconstructive surgery she will need; it will be long and difficult, though. There is no easy solution for this I am afraid.
posted by TedW at 4:51 AM on May 19, 2009

Drive her to the nearest big city for a consult with a doctor and a lawyer. As others have said, this may have been a reasonable outcome for the surgery she had. The doctor who performed it may not have been qualified to do reconstruction. (Or he just may not have been able to do it b/c she couldn't pay for it.) I don't know how likely Medicaid is to pay for reconstruction, but her debt sounds unmanageable, so she may want to look into bankruptcy. (I believe I've read that medical debt is the most common reason people declare bankruptcy.)
posted by Mavri at 6:03 AM on May 19, 2009

You might want to try contacting the Bar Association: http://www.abanet.org/legalservices/findlegalhelp/freehelp.cfm?id=VA

At the very least, they might be able to advise you in finding a lawyer.
posted by parakeetdog at 9:56 AM on May 19, 2009

I would concentrate on learning what's medically possible and appropriate before seeking out a lawyer. "They mangled me and I want someone to fix it" is an understandable emotional response, but it's not going to get anything done.

I agree with this. You need to break down the problem into manageable steps in order to find a solution.

1. Get an expert consultation with an OB/GYN surgeon outside your town. (TedW's suggestion to seek out one of the academic medical centers in Virginia is a good one.) It probably won't be free, but it will be a drop in the bucket, comparatively. Find out:
- exactly how bad her condition is
- whether it is a normal outcome, or whether your friend should have received a different outcome
- what kind of reconstructive surgery (or other treatment) your friend could reasonably expect
- whether this doctor would perform the surgery, or if not, who he/she would recommend

2. If, based on this outside consultation, it appears that there was indeed malpractice involved, find an attorney -- again, someone outside your small town. The suggestion to consult the bar association is a good place to start.

3. Look into financial options. Declaring bankruptcy and qualifying for Medicaid is one possibility.
posted by scody at 11:04 AM on May 19, 2009

There is a lawyer out there someplace, you need to call some smaller injury firms (2-6) people in the closest major city to your area.

Lots of lawyers are hurting for work right now and someone will take your case if your local attorneys are afraid, a relative outsider could be ready to risk it.

Start with this directory:

http://www.martindale.com/

If the first couple lawyers don't want the case, ask for referrals. A younger attorney just out of law school probably needs the money and experience.
posted by T.D. Strange at 8:27 PM on June 3, 2009