Surgery advice

[flybye023]

So it's looking like I'll have to have some surgery this year. I have two options. My question to any of you who have had surgery is how do you research your options without being overwhelmed by the horror stories?

I understand that all surgeries have risks but am having a hard time deciding where to draw the line between positive and negative responses.

[AccountingDrone]

If it isn't prying, what particular operation? Certain things I will never have done, like hip replacement or back fusion unless the bone has pretty much dissolved away into goo, though I have done the whole cancer and chemo twice, gotten a hysterectomy and a few other operations over the years.

Gauging risk depends on the particular operation, hubby was until laid off recently a short term disability case manager for Snoopy Insurance and has a fairly good grip on different operations and their recovery issues. If you let me know which choices you have, I can see if he has any experience managing those kinds of cases.

[MoonCat]

The type of surgery is kinda important here, yeah. I had gallbladder surgery last year. I talked to my regular doctor, talked to the surgeon, and read up on it online (the Mayo Clinic site and a couple other serious sites, not Wikepedia ). Also my sister had it years ago so I kinda knew what to expect.

One thing you have to do is take personal stories with the proverbial grain of salt. If someone wants to tell you a horror story, stop them when they start in on how horrible it was. You don't need to hear that, especially if this is something that's necessary rather than elective.

[flybye023]

No, I don't mind sharing if people think it's necessary. It involves female issues though so consider yourselves warned
















I've been diagnosed with fibroids. One in particular is the problem. Apparently it's growing on a stalk outside the uterus and pushing into the surrounding abdominal muscles so the muscles are pushing back and that's what causes pain for me.

The two main choices I've been given is Uterine Artery Embolization or laparoscopic surgery. UAE would block off the vessels supplying the tumor and hopefully shrink it down but it would still be there. Laparoscopy would remove it entirely. The doctor thinks UAE would be the better option but it's my choice between the two.

The paperwork from the doctor for both was from the Mayo Clinic. I've actually avoided looking anywhere else for the most part, but I still feel like I should look into it a little more but like I said, I'm not sure where to draw the line.

[AccountingDrone]

OK, having done lap a couple times let me tell you my experiences with it.

You go in, get whacked with general anesthetic and off to lala land you go. I have not dreamed on general, YMMV.

They screen off your lower abdomen, scrub it down and make several rather small cuts, 3 to 5 depending on which equipment they use. First thing that happens is they insert the main tool, which they run neutral gas into your abdomen to puff it up to give them working space. Then through the other cuts they insert various tools that they use to work with. They then cut out the fibroids and secure the ends of the various blood vessels with either sutures or cautery. The first couple of laps I had done they just sutured me up with dissolving stitches internally and sutures on the outside that needed to be removed a few weeks later. They sort of itch and I put regular telfa 3x3 pads over them because the sweat pants waistband irritated them. The last time - the hysterectomy they did the suturing, but also finished off by covering up the external sutures with steristrips - sort of a papery adhesive covering that comes off by itself in a couple weeks, but you have to keep them dry.

The cautionary thing about abdominal operations - don't pick up anything that weighs more than about 5 pounds for several weeks. Seriously. Have a pillow to hug against your lower stomach if you need to cough or sneeze for the first week. Colace and lots of water is your friend. Seriously - between painkillers and interrupted diet constipation is a serious threat and it HURTS. Let me repeat that - CONSTIPATION HURTS. Do whatever it takes to keep regular.

To consider when making your choice. The nonsurgical method leaves the fibroid there, and only *may* work. Surgery removes the fibroid, they get to take a look around and see if there is anything else wrong in there and you definitely will NOT have the fibroid any longer. [when I had my hysterectomy, they rummaged around and did effectively a colonoscopy, and told me everything was just ducky so I wouldn't need one for a few years unless some symptoms emerged indicating troubles.] And that reminds me, check for threads on colonoscopy prepping here on the dope. Some people like me have issues with the chemicals they use. You can probably call and talk to one of the nurses about your options there.

[Lyse]

I recommend talking to your nurse, if possible. She can give you the facts about the procedures - including risks - without it becoming a terror story of her sister's cousin's college roommate that ended up dead.

[kpzra]

Surgery tales are like anything, for every bad story you read there are 10 people that don't talk about the good outcome. You have to decide what is best for you what you want. Do you want a bit longer recovery time and the knowledge that it will be gone, shorter recovery time/less invasive but the possibility that they will still have to go in in the future to remove it if it doesn't shrink? I think that is the bottom line, at least in my mind. With any medical procedure there is a risk though.

When I was pregnant I had so many people tell me to avoid the hospital and go with home birth, water birth, midwife, etc and that there is never a need for c-sections as they would cause damage. If I had listened to those people my daughter and I would be dead instead of only almost dieing. So, to each their own.

[Seshat]

One other point: Ask the surgeon who will be doing the operation which one he considers himself more experienced with. That shouldn't be the deciding factor, but it is worth including as one of the things you use to help you decide.


Now as to the main question:

* Do enough reading to find out what could go wrong, and how likely it is.

* Find out from both official and unofficial channels what will happen to you if you are one of the really unlucky ones.

For example, my mother was one of the really unlucky ones with a knee replacement. She's endured pain, additional surgeries, and the risk of above-knee amputation (didn't happen, thank God!). She now has a working knee, but probably won't be able to get a future replacement on that leg if this one ever fails.
However, the hospital and the surgeons and the staff and everyone fell all over themselves trying to put things right.
On the other hand, my best friend's father had a hip replacement get infected, then ... well, it became a long story, and some unhelpful and stupid passing him between osteo-surgery and infectious-diseases specialists.

You want to try to ensure that the hospital and surgical staff will treat you well and respectfully if things do go wrong. And that if you're in a place where you have to pay for medical treatment, it won't be you bearing the fiscal burden if you're the one-in-a-million bad case.


* Can you live with the long term consequences if you're one of the unlucky ones?

For almost all medical misadventures (noone's fault, it just happens) and medical mistakes (yes, someone screwed up); the repair will put things right.

Sometimes, as in my mother's case, the repair puts things right but there are long term consequences anyway.

Sometimes noone can put things right, they can just make it less bad.

Can you live with it?

Also: is the one-in-however-many-million chance of it going wrong enough to put you off the certainty of having to live with what you have now if you don't accept the risk?

[kansasgal]

Lap surgery has been tested and done for a long time, and when it's done, your fibroid will be gone.

The embolism surgery is still fairly new.

I would go with the lap surgery if it were me. When I had my Hysterectomy, it was a full blown scar, and I would have done lap if it was possible, easier recovery (although the Colace advice...TAKE IT!) and you are sure to have the problem taken care of.

[flybye023]

Thanks guys, I really appreciate your input here. I do feel a little better about things now. You've given me some good ideas of which direction to go next.

[Draper Mel]

I would say avoid the message boards and "support" websites for your particular condition. I had spinal surgery a couple years ago. I mentioned to my surgeon the stuff I'd read about degenerative disk disorders. People had surgery in one part of their spine only to have to have surgery in another part a few years later. People were in constant pain or stuck in a wheelchair.

Since what I had was actually a tumor and not a degenerative condition, it was confusing and rather scary. He told me that the people on those message boards were the people who are in bad shape, home on disability and didn't have anything better to do than go online and complain. The people who recover and go on with their lives are too busy to post on message boards.

If you feel you need and/or want a second opinion, get it. Find out how often your surgeon does this procedure. Mine did my particular procedure about once a week, so he felt very comfortable with it, and sounded like he felt comfortable. Don't be embarrassed about feeling scared. Tell them you're nervous. Good practitioners will work with you and not brush off your anxiety.

Like someone else said, people don't remember or report when everything goes right. And despite what the news media would have you believe, things go right the vast majority of the time.

[AccountingDrone]

Actually, for a spectrum of experiences with abdominal procedures you can go to hystersisters.com, they have sections also of just plain assorted advice about how to deal with the pain, or physical issues during recovery, and suggestions for foods. I know it is associated with hysterectomies, but the general advice is also good for any lower abdominal op.

I do also have some food advice, though it comes from the chemo end of things, it is good for anybody who may be recovering from abdominal issues - I found that when I am feeling just plain off, ice cold stuff is easier to eat than warm foods, and if you are trying to cram fiber to push your intestines ice cold fruit is great. Apple slices [dunk them in lemon water to keep them from browning, or just pop whole apples in your bedside cooler and have a paring knife at hand for making slices if you feel daunted by eating a whole apple] melon chunks, seedless grapes, jicama slices dunked in lemon water, baby carrots, celery [love the cold wet crunch] even plain romaine lettuce or napa cabbage leaves. You can get little tupperwaresque containers to hold hummus, salad dressings or other dips to add extra flavor and protein. I had a 1 gallon picnic thermos dispenser set up and if you freeze some of whatever you are drinking in a plastic bowl then drop it into cold beverage, it will stay very cold much longer and not dillute your drink.

[for the first few days you really should not be carrying anything and just getting up for a little gentle walking around and going to the bathroom or moving between bed and couch. Many recovery consultants recommend with lower ab surgery that you spend the first week just mainly vegetating and getting your innards back into behaving. Prepping for surgery is actually very stressful to the poor digestive system. Doubly so if you are on maintenance meds for chronic illnesses and have to step off your meds for surgery.]

I wonder if there would possibly be a market for a small book about surviving recovery ...

[trailerparkmedic]

PLEASE keep in mind that I am NOT a doctor, and I am NOT a nurse who usually handles lady parts.

My hospital's typical fibroid patient is culturally resistant to hysterectomies. Doctors at my hospital generally offer fibroid patients both choices with a recommendation of one or the other. Doctors at my hospital get frustrated because a lot of patients that they think would benefit from a hysterectomy get the UAE and then end up coming back for a hysterectomy. (They aren't mad because the patient chose something different, they're sad that the patient is still in pain and they think it could have been fixed sooner.) I've never heard them get frustrated about patients who they recommend UAEs for, though.

I have heard nothing but awesomeness about hystersisters.

[AccountingDrone]

I have heard nothing but awesomeness about hystersisters.

I found them very pleasant, though for a bit their site was a pain to navigate, but it got better.

I feel depressed that mine went so smoothly, and I was actually ready to get up and go home that evening even though they kept me overnight. [I pop out of anaesthesia ravenously hungry and able to eat and drink immediately, which seems to drive the nurses nuts. I gave up long ago trying to convince them of this and I just have Rob bring me something to eat and drink so I don't have to argue for more than a few crackers and ginger ale. I don't like soda, I prefer a nice iced tea and a chef salad with no cheese and italian dressing. Or the one time he brought a nice pepperoni pizza] Once you can pee, fart and poo on your own after eating and drinking you are pretty much good to go.