My Journal

August 1998

September 1998

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August 1998

I start my online research in earnest. I look for everything I can find on embolization. I encounter the "embo" group and join. Not a lot of websites out there. Only Dr. McLucas and Dr. Kirsch have much information on uterine artery embolization on the web. Dr. McLucas is in LA and I call and ask for information to be mailed to me. When it arrives, I fill out the medical questionnaire and mail it back the very same day.

I don't hear from them again until September when they call and schedule an appointment. They also want to schedule an appointment for the hysteroscopy and laparoscopy. I tell them that I want them scheduled for the same time.

Based on the information I've obtained from ACOG, it doesn't make sense to me that these required procedures be scheduled as 2 separate events.

They argue with me. They are downright belligerent and rude to me. I think I'm about to blow it entirely. I finally give in and let them schedule both of the procedures. I'm determined to discuss it more fully with Dr. McLucas though because I don't think I can handle two separate procedures. I know myself too well. I hate doctors. I hate the thought of surgery. I probably won't return for the second procedure after the first is complete. I would rather die -- my terror of doctors and medical procedures is that great.

September 1998

Thursday, 17 September 1998

To: Bruce McLucas, M.D.
Subject: uae costs

Dr. McLucas,

I recently requested an appointment and additional information from your office and am happy to say that your staff was most helpful in all ways except one: identifying costs associated with this procedure. I received an estimate of the expense of YOUR services for performing the laparoscopy and hysteroscopy but nothing more. The estimate also contained a disclaimer indicating there would be additional charges from the hospital, additional staff services, etc. that were not included. There was no indication, whatsoever, of the expense of the actual UAE procedure.

I'm at a loss on how to proceed. I've spoken to the scheduler a couple of times but have been told that she "simply" doesn't really know. Given that my payout could be anywhere from 10-100% of the total (depending upon what the insurance will/will not cover--the scheduler has indicated that she doesn't verify coverage in advance due to the possibility of "alarming" the insurance company), I'm extremely concerned over being asked to accept a "blank check" type of bill. And, given that your expenses for only the 2 preliminary procedures is over $9K with payment in full due within 90 days of the procedures, I am financially terrified at blindly proceeding without knowledge of what the total bill could become.

Can you help me out here? How can I get this information?

One other question. Why is the UCLA Medical Group the only gynecology/radiology team that requires laparoscopy and hysteroscopy prior to UAE? I can, most assuredly, comprehend the need for appropriate and accurate diagnosis. However, my research of other physician teams offering UAE across the United States do not show the use of both of those procedures prior to UAE. I was wondering what your thoughts on this issue are. And, was hoping for additional information on what, exactly, those procedures offer your team that other teams don't find critically necessary.

Please understand that I'm not trying to be a difficult *potential* patient. My body is in dire need of reparational assistance and the last thing I want to do is alienate another gynecologist. . .especially one that might offer something other than a hysterectomy!

Thank you for your attention to my questions.
Carla Dionne

From: Dr. McLucas
Re: uae costs

Dear Ms Dionne,

Thanks for your e mail. The cash price for embolization, for patients without insurance is about $7,500. We are convinced of the benefits of screening procedures at this point, and our success rates have shown that we have avoided wasting a procedure on patients without other disease.

I would welcome the chance to talk with you further. Please call the scheduling office and ask to speak to me.

Good health,
Bruce McLucas

Friday, 25 September 1998

I begin posting serious questions about UAE to the embo group. Many members are not happy with me. I receive lots of offline email telling me to stop posting. It makes me angry and I continue to post my questions anyways. Dr. Kirsch, an IR in Philadelphia who is a member of the embo group, responds to one of my posts with the following:

>UAE is NOT experimental. This is an expansion of indications for an established procedure that is known to be safe and effective. We have been performing UAE for other indications for over 15 years.

Great. I believe you. But that is NOT what my insurance carrier says. Embolization may not be experimental. . .but UTERINE ARTERY embolization is. . .according to MY insurance carrier (and it's a BIGGIE!) they have no CPT codes for this procedure and MUST have diagnostic proof and a physician statement prior to authorization. Period.

> There is no such thing as an 'experimental' CPT code.

I didn't say there was. I apologize if the wording in my email led you to this conclusion to my statement.

> and UAE is fully described by reimbursable codes. I have done almost 300 cases (largest experience in the world) and am getting paid (at least something) for the procedures on all codes billed. My employer and the hospital would not allow me to do this unless we were getting paid.

So tell me. How do you get patients? Direct from the street? Or, through a gyn? I was under the impression that you work with a gyn who, perhaps, "builds" the case for recommending the procedure. Is this an incorrect assumption???

> The ONLY group performing mandatory hysteroscopy and laparoscopy as part of the pre-UAE screening is Drs. McLucas, Goodwin, and Adler in LA. Most of the UAEs performed world-wide are done after an office consultation with the screening gynecologist, with hysteroscopy or endometrial biopsy as options depending on the patient presentation. This was discussed at the London meeting, which was attended by every person in the world who has done more than 30 cases (with 2 exceptions). So there really is an economic disincentive for a gynecologist to refer patients for UAE rather than to operate on them (at least in the USA).

So tell me. If the UCLA group is the ONLY group performing mandatory pre-screening, what is their motivation? And, what was the outcome of that world-wide discussion on this topic??? Is anyone publishing to medical journals (any time soon) on this issue? If we, as women on the WEST coast, are subjecting ourselves to unnecessary procedures (as you infer), how can we possibly address the issue intelligently when so little is published???? We are, in fact, at the mercy of the physicians we have available to us. In many cases, we are also at the mercy of our insurance carriers. (My husband's HMO won't touch this procedure! -- Luckily, mine will.)

> I do not mean to offend, just inform.

No offense taken. But, I'm not really sure you fully comprehend HOW MANY gyns this pool of women has probably encountered (along with their WIDE range of scare tactics!). Personally, I've been "dealing" with my fibroids for quite a few years now. I could still strangle the first gyn who diagnosed them and then told me that "we" should just take a "wait and see" approach because they were "harmless." Only to follow that up with (several years later) "Okay. Now I think it's time we talk about your hysterectomy."

Oh yeah. And, let's not forget about the cancer scare tactics. And the free videos that proclaim how "easy" it is to get that old, no longer necessary, uterus removed via hysterectomy without really telling you a damn thing about the procedure or the potential outcomes. I did notice an inordinate amount of references to HRT and checked the video box to discover that a certain HRT manufacturer had so "helpfully" put the video together to "reassure" women that a hysterectomy wasn't the "end of the world." Hmmm. I wonder what their "motivation" was. . .

Also, I loved the comic book. I don't know who produced that piece of condescending **** (because I trashed it in a fit of total disgust) but the doctor who gave it to me was "certain" it would help to reassure me and guide me to making the "right" decision. (At the same time--and unbeknownst to me--he went ahead and scheduled the surgery!!! I didn't find out until the hospital called me to ask about insurance info. Gotta love that doctor's chutzpah!)

And then there was the doctor who called me. . .relentlessly. . .to try to convince me to have the hysterectomy. Apparently he was desperate to pay his rent that month. So far, the most informative thing I've seen on this topic was on the Discovery Channel. Yup. I watched the hysterectomy procedure and listened intently at all of the gynecologist's observations and thoughts. Including her dissection of fibroid matter. Gee. Who'd 've thought that a woman might actually want to see the procedure performed. . .??? Duh. How about doing something similar for UAE and giving this procedure more exposure???? Just a thought. . .

In the meanwhile, with statistics like the following (from the UCLA website):

• 20%-40% of women older than 35 have fibroids
• 33% of all hysterectomies are performed to remove enlarging fibroids
• 20%-25% women undergoing myomectomy (surgical removal of fibroids) will ultimately require another surgical procedure to remove new fibroids. Generally, a hysterectomy is the follow up procedure.

I have but one question:

"Why?"

I lied. I have a lot more questions. But they're really angry ones. . .like,

"with numbers like these, why isn't there more research into more appropriate solutions that WOMEN WANT!!!!"

and, my favorite

"if a man had a tumor growing on his penis, would he easily, readily, without a second thought, allow a surgeon to REMOVE HIS PENIS?????"

carla :)

Monday, 28 September 1998

Initial contact. My first appointment with Dr. McLucas.

I arrive 30 minutes early for a noon appointment. Since LA isn't a place I normally drive to, I wasn't sure how long it would take me to arrive at the Medical Plaza. As it turned out, traffic was extremely heavy, stop and go, and I almost missed the Wilshire Boulevard East exit.

I have to go to the bathroom--desperately--but, I don't. The restroom available off to the right of the elevator is locked. Damn. Okay. Now what? Look for another restroom? Nah. I decide to proceed to Dr. M's office...with the definite hope that surely there will be a restroom there...or a key available to the hallway restroom.

"Doctor?" the gal with the headset asks.

"Huh? Oh, McLucas."

"Name?"

"Dionne."

"You're early." She starts flipping through paperwork and talking in her headset.

"Doctor needs to know the name of your regular ob/gyn."

"I don't have one."

She flips through charts. I presume they're mine.

"This Dr. Sawsman...is he your doctor?"

"Salzman. No."

"Don't you go to him? Don't you have his address and phone number?"

"No."

She looks at me funny and then talks some more into the headset.

"You don't have his phone number?"

"In Colorado? No, I don't."

More funny looks.

"I haven't seen Dr. Salzman in over 2 years."

"You don't have a local doctor?"

"No."

How does one even begin to explain, in a few short sentences, what one's medical history has been like over the past few years...one simply doesn't. And, on top of that, experience has taught me that this information is inconsequential to front desk staff personnel. I would be wasting my breath and broadcasting to the waiting room at the same time. Neither thrills me.

"Have a seat. You're early."

I know. But I say nothing. I take a seat. Think it don't speak it. Think it don't speak it. It's a mantra my husband jokingly taught me after too many incidences of foot-in-mouth syndrome. After many fine discussions with my spouse I've finally learned that I don't always pick my battles wisely. Doctors and their "fine" office staff often piss me off and the end results of my mouth opening are rarely good. Think it don't speak it.

Yes. I'm mildly annoyed at the brisk woman barking at me from behind the desk with headsets on and little to no time for my lack of answers. But, I sit down. Geez I have to go to the bathroom. I try to distract myself by opening a book that I brought with me. Two seconds later, or so it seems, a door opens and my name is called. I get up and follow the nurse through the doorway.

"We need to get a urine sample."

I smile.

"No problem."

The nurse turns to look at me (possibly to determine the meaning behind my words) and then catches "it" and smiles back at me. Definite relief ahead.

After I place the cup in the passthrough I come out and am instructed to sit down so the nurse can take blood. She fumbles around for a few minutes--looking for something--then goes away for a few minutes. Returns. Puts everything she had previously laid out for the blood sample away and then tells me to follow her. Okay. No blood afterall, I guess.

"We need to get your weight."

Okay. Just a change in gears I guess. I trot down the hallway following dutifully behind. We enter a patient room and I get on the scales. 194. Oh god. Apparently the height-weight perspective isn't important. No height taken. Weight is weight I guess. Blood pressure is next. 120/70. I'm pronounced "normal" and instructed to return to the waiting room. Okay. I return to the waiting room.

Not 2 minutes later the headset girl is calling my name and telling me that I have to go downstairs for a blood work-up. Huh? Oh. Okay. I get up, go to the window and am handed paperwork and instructed to go downstairs. The paperwork has "embolization panel" circled. I ask what that is.

"CBC and a bunch of other stuff."

"Like what?"

"You'll have to ask the doctor."

Okay. Nevermind that I haven't SEEN the doctor yet. Nonetheless, I once again dutifully follow orders and head for the elevator to have my blood drawn downstairs somewhere.

Downstairs I hand over the paperwork. Apparently my insurance card has been xeroxed and attached. I can "have a seat." I do. Seconds later a woman calls my name and I follow her to have my blood taken. She doesn't like the look of the veins in my right arm and commands to see the left. The left makes her happier and she ties a rubber band around my upper arm and slaps the vein a few times. Seemingly satisfied, she seeks 3 vials and a butterfly needle. She preps the needle only to drop it on the floor as she turns to put it into my arm. We both look down. She picks it up and proceeds to my arm. My forearm folds upward and she stops and looks at me quizzically.

"I'd prefer that you not use a needle that's been dropped on the floor."

"Huh? Oh. Yeah. Sorry."

She throws the needle in the trash and acquires a new one. This time I allow her to proceed.

I return to Dr. M's office and am barked at, once again, by the headset queen. Okay. She's really starting to annoy me now. The same nurse as before peeks her head out and tells me to "come on back" again. I do. She leads me to Dr. M's office and tells me to "have a seat." I do. He's on the telephone.

It's a big office. With windows covering 1 wall and part of a second wall. His desk is L-shaped and there's a computer sitting before him, a stack of mail, and the blinking lights of people on hold waiting to speak to him. There are only 2 chairs that visitors can sit in. Hard back, wooden chairs that are placed flush up against the farthest wall from his desk. A bit of artwork shows that he is "into" Asian culture. Otherwise, his office is sparse. His chair looks comfy and expensive. The chair I'm seated in feels like he really doesn't want me to be here too long. (I discover later just how "on target" that thought is.) His conversation comes to an end.

"Mrs. Dionne, is it?"

"Yes."

"You've come here to ask about uterine artery embolization?"

"Yes."

"Well, in order for me to refer you for uterine artery embolization you must be able to tell me that you have a severe bleeding disorder--that you bleed all of the time. Do you understand Mrs. Dionne?"

"Huh? Well, no I don't really bleed all of the time."

"Mrs. Dionne, in order for me to refer you for this procedure you must indicate that you have a bleeding problem."

He picks up the mail in front of him on his desk and starts sorting through it.

"But I only bleed heavily during my period."

"Mrs. Dionne, an interventional radiologist performs a uterine artery embolization. He stops the blood flow Mrs. Dionne to your uterus. You must have a bleeding problem for me to refer you. Do you understand?"

He fiddles with his computer and seems to be reading something on the screen. He types something in and seems to forget that I'm here.

The lightbulb goes on. We're not even going to get to an exam if I don't answer this man's question correctly.

"Yes. Yes, I do have a bleeding problem. I do pass blood clots during my period each month."

"Good. That will do Mrs. Dionne. Now, do you know about hysterectomy and myomectomy?"

The phone buzzes. It's Christine Lahti on the line. Something about a fundraiser. He ignores me completely and picks up the phone to talk to her. They chat for 5 to 10 minutes and I get the basic gist of the conversation--he's asked her to lend her name or attend a fundraiser he's working on and he's schmoozing with her. Ugh. I'm not impressed.

He finally gets off the phone and pulls down a glossy flip chart. He's a good 5-7 feet away from me at his desk as he starts flipping through a five and dime explanation of hysterectomy and myomectomy and pointing to the glossy flip chart. It barely takes 2 minutes of his time. The phone buzzes again. It's a workman he wants to hire to clean the gutters of his home (or maybe it was windows, I don't remember which) and he takes the call. There's some haggling and he ends the call by giving the guy on the other end his home address. He gets off the phone and buzzes the nurse.

"Can you show Mrs. Dionne into an exam room." It's not a question. It's an order.

We go into an examining room and she instructs me to undress from the waist down and then leaves. I do. Dr. McLucas comes in. He turns on some ultrasound equipment and squeezes goo on my abdomen. He feels inside my vagina and rubs the ultrasound equipment across my abdomen. Whole process couldn't have taken more than 2 or 3 minutes. Probably less. He says nothing to me the entire time. He gets a phone buzz and turns and answers the phone. Another telephone conversation as I'm left laying on the table with my legs up and goo on my gut. He gets off the phone and tells me my fibroids are on the "outer limits" of what can be helped by embolization. "Not an optimal size" I think is what he said. Then he tells me to get dressed and leaves.

I get dressed and return to his office. He wants to schedule the hysteroscopy and laparoscopy. He indicates that he saw my note on insurance payout (I had written to him requesting that he accept the insurance payout for the procedures as payment "in full") and that that would be acceptable to him. I thank him and request that the hysteroscopy and laparoscopy be done at the same time. I tell him that I can't handle having them done separately. He stops and stares at me. I don't know what the hell he's thinking. I'm not sure if I'm going to "win" on this one. It doesn't look like it. I'm a nervous wreck just asking him about it. His staff has already given me a hard time about this and has already scheduled them as separate procedures but I push on.

"Mrs. Dionne, they must be done separately."

"Why? Why do you do them separately?"

"Mrs. Dionne. Occasionally women who have a hysteroscopy present with a malignancy. I do them separately to spare those women from an unnecessary procedure. Because if they show with a malignancy I do not do a laparoscopy. Do you understand, Mrs. Dionne?"

Yep. I understand. Only too well. Again, I push on. My voice quiet and trembling the entire time. I've started shaking a little as the entire appointment has begun to wear on me. I hope he doesn't notice.

"Well, what I know about myself is this. If you do these procedures separately and anything, I mean anything goes wrong or upsets me in the least, I won't return for the laparoscopy. It's better if you do them both at once.

A man of few words. He picks up the phone and cancels my previously scheduled dates.

"How does the 5th of October sound to you Mrs. Dionne?"

"Next Monday? For both procedures at the same time?"

"Yes."

"Sounds fine."

My visit with Dr. M is over. We never discuss the blood or urine samples. In fact, all told, I doubt that Dr. M spoke more than a dozen or so sentences to me. I'm escorted out by the nurse as he moves on to other "fish." As I pass by the headset girl she stops me and asks me to sign a piece of paper. It has a list of "choices" on it for fibroid treatment and, when signed, indicates that Dr. M discussed all of the options listed. He did not. Some of the "choices" I've never heard of before. I make a mental note to find out more about them and sign the piece of paper.

I walk out to the elevator, go down, get disoriented and get off at the wrong floor. Get back on the elevator and go down some more and, with the assistance of other elevator passengers find my way back to the parking lot. I get in my car and just sit there. I start crying and can't stop for what seems like an eternity. Is this the price I have to pay to get a referral for uae? Well, maybe it's just me. Maybe I'm so far "out there" with my fibroids and pain and distress that it's just me and not him at all. I don't know. I just don't know much of anything anymore. It could be me and not him at all. I just don't know.

Tuesday, 29 September 1998

I get referrals from the appointment scheduler in Dr. M's office.

Unbelievable. All seemed to have a pretty negative opinion of him. Nonetheless, they view him (as I do) as the "gatekeeper" and tolerated his behavior until post-procedure and then went back to their own gyns. I talked to no one who had decided to retain Dr. McLucas as their gyn!

I send out email via the embo group with TONS of questions re: UAE and Dr. Kirsch responds again with the following:

> I have gone through this with many insurance companies. Uterine Artery Embolization for fibroids is NOT experimental.

My insurance carrier is not the only source of the term "experimental" in regard to this procedure. The following excerpt is from the article "Treating Fibroids" printed in the April 1998 issue of the Harvard Women's Health Watch newsletter:

"Embolization is an experimental procedure, performed by interventional radiologists, that is designed to reduce fibroids by obstructing the rich blood supply that nourishes them. . . .Because embolization is still in its infancy, there is no established treatment protocol."

The article went on to say that in early studies of approx. 100 patients, the most commonly reported side effect was severe cramping. Also, about 10% of patients required further surgery.

"Although these approaches have been given increasing attention in the popular press, they are by no means well established."

The advisory board to this newsletter includes Dr. Barbara Weissman for Radiology and Dr. Martha K. Richardson and Dr. Isaac Schiff for Gynecology.

For almost 3 years now I have been tracking publications available to the "layperson" on the issue of fibroids. I don't know. I think it was the comic book incident that drove me to the bookstore and forced me to spend a couple of hundred dollars or so on EVERY gynecology book they carried. . .I thought to myself ". . .with over half a million women in the U.S. annually being confronted with this issue, there MUST be better materials written and available at the bookstore. . .".

Extended *LOL* Not bloody likely. (No pun intended.)

I read them all. Some I threw in the fireplace. Others simply made it to the trash. One was shipped to a friend of mine in Oregon who was experiencing severe pain from endometriosis and having a difficult time getting a straight answer from her gyn. In one book, I highlighted passages and shared them with my spouse. For women experiencing sexual dysfunction post-hysterectomy, the recommendation from the doctor who wrote the book was priceless: ". . .dump him." Whoo boy. I laughed. My husband grew concerned. This was the best advice this doctor had to offer???? And, what other kinds of advice are you getting reading these books and talking to doctors? Sorry. I digress. :)

Simply put, "there ain't a whole lot out there, doc." Unless, of course, you enjoy reading about hysterectomy. And, I've read enough to tell me that unless I have cancer, renal failure, etc., from the size of my fibroids, I won't be scheduling a hysterectomy any time soon. :)

> CPT codes do not describe IR procedures by specific name, but by a description of what is done - 36247 and 75736 say that you did a subselective arteriogram in the pelvis, regardless of which vessel you looked at, 37204 and 75894 say that you embolized a vessel outside the central nervous system, but do not specify which vessel you embolized.

Okay. That explains (to me) why some insurance carriers simply pay.

> The two largest series in the USA, mine and UCLA's, were both submitted to the IRB (the hospital committee that oversees experimental procedures) at our respective hospitals. Both IRBs stated that this was NOT an experimental procedure, and refused to monitor or control IRB.

Back up a little for me please. The 2 largest series in the USA were submitted to their IRB before or after the procedures were performed? I'm presuming that if there is a "series" "submitted" that the submission was post-procedure. Is this correct? If so, when you FIRST performed this procedure (UAE), how was permission from the hospital obtained? How would a hospital approach this procedure today if one of their interventional radiologists wanted to perform the "first case" at their particular hospital? There are over 4,000 interventional radiologists is the U.S. Why aren't more of them looking at this procedure? How does their affiliated hospitals play a part in this?

> Everything used during an UAE is used within current FDA labeling guidelines (unlike lots of other procedures that I do, and get paid for with no question at all).

I think you wrote this sentence a little too quickly and mixed your nouns with your verbs :) ("Everything used" and "procedures that I do"). It's important to ensure that women on this list don't mistake this statement to mean that the procedure itself is FDA regulated. Medical procedures are NOT regulated by the FDA. When you write "everything," is it safe to assume that you are referring to the medications and medical devices employed in performing this procedure? Items such as a catheter, the PVA particles, etc.? The FDA does, in fact, regulate the manufacture and distribution of those items along with their PIDS (product insert data sheets) that identify specific information critical to their appropriate use. (While you indicated that you follow the guidelines as presented on the labels for the devices/meds used during an UAE, it's important to note that sometimes physicians do not. Researching the FDA website complaint files will give you ample examples of physicians not following the PIDS.)

Here's another way to look at it: If you've ever bought a bottle of aspirin, you've no doubt read the "label." The information contained on that label is regulated by the FDA. How you choose to follow that "label" information is another matter altogether and clearly not one regulated by the FDA. I bet I'm not the only one who, on a REALLY BAD DAY, has taken 3 or 4 aspirins in a very short time span contrary to the label. . . :) I don't recall the FDA snatching that bottle away from me in a fit of regulatory concern. . . :)

> All of my patients are screened by one of several gynecologists (whether they are first seen by the gynecologist, or approach me first after seeing info here or in an article), but the precertification/insurance approval for UAE is entirely handled by the Angio suite staff. We do need some information from the gynecologist to show that treatment is indicated in the specific patient, but there is no need (usually) to go through any great hassles to 'build' a case.

First and foremost, since you deal in blood and the gyn deals in body parts, I think it's safe to say that many insurance companies are gonna want to know what the fibroid-blood connection is in the patient before they approve of anything. For all of you out there who just got your bleeding "under control" due to a diet change, be prepared to be asked by the gynecologist why you feel this procedure is necessary. (If you want this procedure, simply respond "because of unusually heavy bleeding."!!!) This is how the gynecologist shows that "treatment is indicated", and, more specifically, how they can justify UAE. :) I'm learning.

> I have put myself in an awkward position here.

Yup. :)

> Our group and other groups across the USA and in Europe do not feel that laparoscopy is necessary for pre-screening. My patients are screened by the gynecologist with history and physical, review of records, ultrasound examination, and office hysteroscopy/endometrial biopsy if the gynecologist feels they are necessary for this particular patient.

Okay. I'll buy that. It's not always a simple walk from the gyn to the IR. Diagnostics ARE being performed all over the U.S. Laparoscopy is the only one that's somewhat controversial still?

> Medical publishing takes a LONG time. Too long.

But layperson materials don't!!! We need over-the-counter info placed into all of those procedurally-out-of-date-but-just-edited-for-new-release materials currently available!

> But in this case the major stonewall is your insurance company, which is refusing to provide you with a service which you and physicians you trust feel is safe, effective, and indicated.

Yes and no. I think my insurance will, ultimately, approve this procedure for me. I also think that right now I have no "real" choices. Hysterectomy is major surgery. PVA Particles can cause death if used incorrectly. (Although no cases have been reported with UAE, there are numerous "serious injury" complaints associated with other uses that have been filed with the FDA. It is a product that has been around awhile.) Myomectomy is major surgery possibly requiring transfusion. Wait-and-see can allow fibroid growth that results in renal failure (among other things). ETC., ETC., ETC. It's kind of like being 9-months pregnant for the first time and realizing that you have only one real option: childbirth! And, no matter how much you tell yourself how much you want that child, the reality of labor hits you like a mack truck careening down a rollercoaster! You can't get off. You can't slow it down. You can't jump. You're simply stuck. And, ultimately, only YOU can figure out how you're going to get to the other side of the situation.

> I hope this helps. I acknowledge your frustration and anger, and wish that I could relieve it. But I don't have the magic wand, I just keep on muddling through - like the rest of us.

It does. :) I'm an idiot in interpreting medical mumbo jumbo. . .but, I'm ever willing to learn! Particularly if it helps me to make an informed decision on this issue. It is, afterall, MY body. Just why is it that doctors need so much control? . . . carla :)

Wednesday, 30 September 1998

I receive offline email that asks me to stop asking questions of Dr. Kirsch on the embo list. I respond with the following:

I sense from your email that you perceive that I am "picking" on Dr. Kirsch. . .I do NOT believe that I am. To me, it's important for doctors to understand that what they communicate to patients is taken quite literally. . .therefore, they MUST start choosing their words more carefully! And, preferably, with more intelligent detail. (Such as that provided by Dr. Kirsch. . .) Besides, if you re-read the email progression, he was the one who took exception with MY use of the term "experimental." Not the other way around.

< Carla, maybe it's time we started asking the insurance companies and the people writing the article in the Harvard Women's Health Watch how they define experimental. They're the source, not Dr. Kirsch. Why ask him to explain their choice of terms?

Okay. Now for some ranting. Those who care not can simply hit the told "Delete" key. . . We're not a bunch of morons without voices and it's high time we stood up and actually spoke some of what we think! Now, please understand that I write that in somewhat anonymity and feel quite comfortable doing so. Place me in front of a doctor with my pants and undies in a chair and a paper napkin sitting on my lap and it's awfully hard to muster courage to speak up AND retain personal, physical, dignity at the same time. My brain short circuits and I am useless in my ability to speak coherently.

I've tried to write up notecards with questions to take with me. . .but oftentimes I'm cut off by either the doctor's inability to shut up and listen to a completed question (his/her move to keep control of the relationship and dominate position of authority--I think) OR their total lack of time. A quick look. . .2 statements. . .voila, diagnosis. Take this and go away now. . . Once I showed up with a notecard and started to write down the doctor's response (so that I would remember later) and the doctor got up and left. A nurse came in and told me I had to leave. The next day I received a certified letter stating that the doctor felt I didn't trust her and that, therefore, she must terminate the doctor/patient relationship. HUH??? Okay. I thought I trusted her. . .why else would I have made the appointment in the first place??? BTW, I was six months pregnant and had been seeing her for quite some time. . .

I never asked Dr. Kirsch to explain "their" choice of terms. I did, however, ask him to explain, more fully, how his hospital went from "experimental" to "accepted practice". Without this information can you or I be of any use in assisting this process to move more quickly??? Or, do you want to wait around while the doctors/hospitals/insurance companies "dance their tango" until you don't have a choice at all because the fibroids have done serious damage to internal organs???? . . . carla

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