Saturday, January 01, 2005

Operative uncertainties: why did I come out of the OR with a different diagnosis/surgery from the one I went in with?

I read many comments from women who are surprised to wake up from surgery without their ovaries when they thought they were only having their uterus removed, or who find that they have a whole new shopping list of diagnoses that they never expected when they went in. How can this happen? they ask. They told me that these things "might" happen but were not likely.

Doctors really get in a bind between trying to prepare you for all the eventualities and to steer you so that you're not totally overwhelmed with fear of things that just aren't likely at all. It's a hard call, and it's made vastly more difficult because the diagnostic tools we have just aren't that accurate.

That's right: for all the ultrasounds and MRIs and CAT scans and all those advanced tests, there's just nothing that is anywhere near as accurate as opening us up and looking around. It's a very common thing for women to go into the OR with one diagnosis and come out with either a different one entirely or a whole raft of unexpected discoveries.

For example, endo seems to be a surprise discovery in about half (that's a seat-of-my-pants guesstimate based on what I read online, not a firm statistic) of the women who have a hyst and endo--it's never suspected or diagnosed pre-operatively in a surprising number of cases. Another surprise diagnosis is adenomyosis, which will turn up in a hyst done for fibroids or endo without ever having shown up well in diagnostic imaging. Sometimes extensive scarring or damage from other disorders, as in a case where large fibroids actually damage ovarian circulation, is what makes the deciding difference in the operative plan, and yet scarring is virtually invisible to most diagnostic techniques. Women who have suffered from pains and miseries all their lives and who were told they simply had to put up with it as their lot in being women often are astounded and validated when they return from the OR with a whole shopping list of abdominal pathologies that remained elusive until the surgeon actually got a good, personal, eyeballs look.

The fact is, a preoperative diagnosis, while informed by every skill the doctor can bring to bear, remains only an educated guess. I think this is one reason why, unless the diagnosis is very well-defined indeed, women may be well served by having that abdominal incision. I know that I felt that since I was having the surgery one way or another, I wanted to know that as of that date, there were no more lurking surprises that might have been missed by the more limited vag approach (well, that plus the fact that my uterus was roughly the size of a steamer trunk and I strongly suspect they brought in a fork lift after I was anesthetized to get that monster out). I don't think that this is in itself necessarily a compelling enough reason to choose this route, but it is certainly an added peace of mind that helps offset those first few days when the incision is most troubling.

So I would have to say, after the years I've been involved in the hyst community online, that a pre-op diagnosis is only a "best guess" and that a wise woman and her doctor consider it a very open-ended proposition. And because our ovaries are rather fragile organs, I think that however much we may hope to keep them, they have to be considered at high risk for possible removal.

A prudent woman facing surgery should make her feelings known very clearly to her surgeon on what her stance is on ovarian pathology. I think most of us would okay removal immediately if cancer were suspected. Short of that, however, are a lot of grey-area calls. Do you want suspicious ovaries removed "just in case" or do you want them biopsied with the option of later (minor surgery with laparoscope) removal if indicated? Many doctors feel that after age 45 ovaries represent more liability than value (although that may be changing), on the premise that our bodies need hormones for nothing other than fertility. Many women in menopause disagree with this, and it's something that it's best to think out in advance (a brief hormone education that might help you explore this further is here) lest your doctor make a decision for you that you would not have favored had you been a party to it.

At the very least, you can ask your surgeon: under what conditions during the surgery will you remove my ovaries--what are the decision points for you? And if you disagree or think the matter requires evaluation at the time of surgery, you can modify your operative permit to include the specification that if ovarian removal is indicated based upon surgical findings, you only will grant consent for it through [your personal rep named in the permit, whom you have prepped with your views in great detail and whom you trust to carry out your wishes as best they can]. In such a case, the surgeon would have to contact that person (who would obviously be standing by in the waiting room through the surgery), explain the situation, and receive their consent for whatever option is proposed. This is not an unheard-of option, and one that women who have strong feelings about their ovaries have successfully taken.

So while there are unknowns we all face when we go into surgery, good planning and frank "what if" discussions with our doctors can help make sure we're better prepared for those uncertainties. When your doctor runs through that list of "possible but not likely" outcomes, stop him and ask: but what if that does happen? What then? What are my choices? What will those choices mean for my future health? And if you feel you need to, you can add language to your operative permit to specify that in a "what if" situation, the doctor will perform the option you prefer.

We can't eliminate the unknowns--they're part of the package--but we can prepare for them as well as possible so that the fear of them beforehand and the way we deal with them afterwards are at least less stressful for us. And we certainly can use a little stress reduction as we're facing this surgery.