Second Guessing myself

[inkydoo]

I am a 61 yo woman with a prolapsed uterus. I am seeing a urogyn at a teaching hospital. Initially I was signed up for a robotic sacrocolpopexy with mesh but then I heard about all of the mesh problems. I went back and talked again to the surgeon. She has had few problems with the mesh, and seems to favor it, but is willing to do a vaginal hysterectomy and vaginal suspension surgery/no mesh. I know there is a higher failure rate with this and it will also mean removing my cervix rather than leaving it there, which is what she planned to be with the other surgery. I told her I'd prefer to start with the less invasive surgery, i.e. no mesh, first and then if it doesn't work move on to the more complex surgery down the road. She is fine with this. I have done a lot of research and know that many of the mesh problems were for transvaginal placement and were for things other than vaginal vault suspension, but after reading the FDA statement it sounds like they are indicating that there have been problems with mesh in general and that the mesh as well as the transvaginal placement is what is being reconsidered. Do I have this wrong? My urogyn seemed to think it is only the transvaginal placement of mesh and the "kits". Any info is helpful. Thanks so much. What a great resource!

[sherrieP]

Again, unacceptable! This woman clearly has no idea what she should be doing and I'm glad you are going to bring it up to the dr. She should not be allowed to continue to give inaccurate info in ANY form and her calloused comment about wetting your pants is outrageous! Consider taking a piece of paper with all of her errors with you to hand to the dr so nothing gets left out because of time constraints.

Boy I'm doing a burn on this end.....

I'm glad you are handling it with finess though!
Sher

[inkydoo]

Ok....talked to the nurse in my Urogyn's office. I asked her purpose of a suburethral sling....she said "so you don't wet your pants", when I told her that I don't wet my pants now there was silence. She then covered by herself by saying "Well, I just put all of the possible things you might need on that form so that the OR people know what we might need." Since the form she sent me only goes to me (Has dates for preop and post-op visits, etc), I doubt this is the case but.....When she finally got my chart to come up on her computer she read it and said "I'll take that off of your list of procedures". I then asked her about why I now supposedly need an anterior repair when during the time I was scheduled for mesh surgery it was only a posterior repair....she said that it had to do with the procedure and the way they do the support, but you could tell she was winging this. I will be seeing the doctor for a pre-op visit prior to the surgery and she said that I can clarify all of this then. Seems to me that this woman needs a bit of education on how telling people they are scheduled for procedures that the doctor hasn't discussed with them at the initial appt is not a good idea!!! I will mention this to the doctor when I see her pre-op.

Again, thanks for the support Sherrie!

[sherrieP]

I think it's a great idea to have clarified with the dr that you want the urogyn doing the surgery, All too often ob/gyns want to do these surgeries and although I do think they are an intricate piece of the puzzle (I feel all women should be screened for POP-something that is currently not done and I am trying to change!), I feel the procedures themselves should be in the hands of board certified or fellowship trained urogyns/urologists. Ask ALL questions you have-the more we voice our concerns, the more the physicians become aware of the fact that we are active participants in our health care.

Good luck, keep me in the loop!
Sher

And the question s/b where would I be without each and every one of you? If every woman I connect with shares her info with 2 other women, the grassroots shift moves forward and soon all women will know about POP ahead of the curve!
:)

[inkydoo]

Hi Sherrie- Thanks so much. I will check out the links you sent me. I think you are right about talking with the doctor. I'm wondering if it doesn't make sense to have the nurse check out the file for me first to see for sure if the doctor is the one who made the mistake or if she did. I have the same concerns you do about teaching hospitals, unfortunately there are no really topnotch hospitals in my state that aren't teaching hospitals. Those that aren't don't have specialists. I have made it clear that it's fine with me to have a resident or other med student assisting, but that I only want the urogyn to be the one who is actually doing the surgery. Whether that is honored or not I don't know. I agree about the complexity of that area of your body, and that is one of the reasons I went to a specialist, I wanted the best care. My gynecologist was ready to do the sacrocolpopexy but when I researched what was involved I quickly vetoed that idea!
Thanks for all of your feedback on this. I will be sure that everyone on board is clear as to what it is I am agreeing to. I will also make sure she hears me about the mesh.

What would we do without you?
Susan

[sherrieP]

Have a few spare so will address this now-I am on the same page as you, this is NOT acceptable. You have every right to be alarmed and you should be questioning what the plan is. My biggest concerns with medical school procedures is often it is physicians in training who are preforming these procedures. That may be fine for an appencectomy, but it is hugely scary in my book for POP. This region of the body is such a tightly compacted blend of organs, muscles, and structural tissue; these are not simple procedures to pull off. Of course physicians in training need to be able to do these procedures to learn the ins and outs of them or we would not even have urologists and urogyns.

I would suggest you aggressively question the lead physician regarding these paperwork errors, it may be as simple as the nurse who is filling out this paperwork is new or not very good at her job and she messed it up or it could be more complex. Either way you need to know clearly ahead of the curve what the plan is and that you and your physician are on the same page. It is typical for all of us to not question our physicians, we tend to put them up on a pedestal. But the reality is drs put their pants on one leg at a time just like the rest of the world (which I'm sure your husband can attest to!), and they need to recognize that they are actually working for us-we have hired them to perform a service for us. It seems like there is no middle ground on this, the physicians I network with seem to either be incredible women's health advocates or they think they are Gods. Not much in-between unfortunately.

Here's what I suggest you do-
1. Take a copy of both of the messed up pieces of paperwork with you to your dr.
2.Have him clearly spell out to you what he plans to do.
3.Make sure that the procedure you want is what is recorded on paper-physicians work an incredible amount of hours and fatigue can create mistakes-if the paperwork says the wrong procedures, once you are on the table and are more a body for repair than a person talking and looking at the physician eye to eye, it is too easy for an error to occur.
4.When you do go in for surgery, make sure the nurse attending you pre-op tells you what procedures you are supposed to have. If what she  has on her paperwork does not correlate with what you are supposed to have done, tell the nurse AND the dr when he comes in to talk to you b/4 surgery.
5.Make sure to clarify once again that you do NOT want any mesh placed in you the day of your surgery.

I also suggest you check the watchdog sites for your physician. Just because he affliates with a top medical facility does not mean he is top notch. I'll PM you those site names.

Hope this helps!
Sher

[sherrieP]

Just got in from FDA meeting and do want to address this, I can sure understand your concern!! I'll try and get a reply off to you b/4 I head out for a fundraiser tomorrow. Hang in there hon, I'll get back to you as soon as I can-by tomorrow evening at the latest.

Sher

[inkydoo]

hi Sherrie- Glad to hear that your testimony went well and I will be eager to read what you said.
I am really bummed because my doctor's office has made yet another mistake and this has increased my anxiety. Last week I got a form from them giving surgery date, pre and post op visit dates, etc. At the top of the page the nurse wrote what is being done. Well, last week I talked to the doctor and we changed my plans from a daVinci sacrocolpopexy...primarily because I am afraid of mesh....to a TVH with vaginal vault suspension and some mild posterior repair. The form I got last week, which was filled out AFTER the day I saw the doctor, still had the information for the original procedure. I know these things happen so I called the nurse and we got it straightened out. So today I get the "corrected" form and at the top of it the nurse has written that I am having a vaginal hysterectomy with vaginal vault resuspension and a posterior AND anterior repair, and a suburethral sling! My doctor and I never discussed any anterior repair as it is only my uterus that has prolapsed, and I have NO incontinence so don't need a sling of any kind. To make it worse, the only kind of sling this doctor does is with mesh and I originally changed my kind of surgery because I didn't want mesh!!!!
This is an experienced, well trained specialist who is part of the urogyn team at the best hospital in our state, which is part of the Tufts Medical School. I will call the nurse on Monday when she is back in the office, but frankly, I am worried now that they won't do the right thing in the surgery!!! I know that people make mistakes, but this is twice now.
I am not someone who gets easily disturbed by this stuff. My husband is an MD and I am a clinical social worker who has worked for many years in medical settings. This is just not acceptable in my book.

[sherrieP]

There is so much controversy on the mesh front right now, I can sure understand your concerns-let's clarify things a bit. The issue being addressed at the FDA this week will be transvaginal mesh procedures. The FDA has concerns about the rate of complications. What is not being talked about is the reason behind the failure rates.

There have been some complications related to kits, it is always a good idea to hold off when a new "tool" comes out for any surgical procedure as well as to do homework and explore how much research went into how well the new product works. Medical device manufacturing companies continually try to come up with new, less invasive, more beneficial products to treat POP. The pelvic cavity is such a mish-mosh of organs, muscles, and structural tissue that it truly takes an expert to get the surgery right, no matter whether a physician is utilizing a newer kit product or an older tried and true method that it sounds like your urogyn intends to utilize. (This is what my urogyn did as well.)

My opinion is the problems that typically surface are more frequently related to physicians who are not fellowship trained urogyns or urologists are attempting these procedures. It truly takes an expert to get it right-urogyns and urologists go through an extra 2-3 years of training to specialize in the pelvic floor zone-a pivital piece in the successful POP surgery puzzle.

It is truly a personal opinion which step to take with surgery just as it is whether or not to have surgery at all-I always advise women to follow their guts on this. I felt I wanted the repair done in one fell swoop-did not want to go through POP surgery twice; it's a pretty intense heal curve post surgery. But I also understand women who have concerns with mesh. I had 3 of the 5 types of POP and mesh was used to repair 2 of them. I have been very happy with my result-the heal curve was long but I truly feel I made the right choice for me.

If your guts tell you to go mesh free and you are comfortable with the probability of repeat surgery, then I say stick with your comfort zone. I am going to PM (private message) you with a bit more info for backdrop.

Good luck, if you have additional questions as you approach surgery, send them on over and I'll do the best I can to help you!
Sher