More on the bad MRI Report

I complained to the site manager at the MRI facility two days ago and she went to see the doctor that reviewed my MRI. He generated a new report but all it says now is that "the patient says that she doesn't have fallopian tubes...endometriosis is probably in the pelvic cavity" or some such variety of that.

No mention that he went back and found my right ovary and...no mention of the 9.4cm cigar-sized-fibroid that allegedly teeters at the top of my uterus.

I'm actually quite stunned that despite my explaining to the site manager the issues with the report that he didn't take time to go back to the MRI and recheck that measurement.

All I can say is that this is horrifically shoddy work. Why this man was allowed to pass through medical school is a mystery to me.

I still have not heard from my RE either. I phoned the clinic twice yesterday and on the 2nd call they went to his office and found that my file was on his desk. So he's "thinking of me". Hmm. He was in surgery all day yesterday and never made it to the clinic. So that explains why I didn't hear from him yesterday but not why 10 days since my MRI I still haven't heard from him.

I dunno what to make of all of this. I can't wait to hear his opinion on the MRI.

Even I Could Have Done a Better MRI Report

I never seem to be disappointed by the drama and senseless crap that arises in the IF world. This week ushered in a new meaning of the word clusterfuck.

The MRI facility (Columbia Circle Imagining in NYC) that did my pelvic scan was instructed to send the report to not only the ordering physician, but to two of my doctors in California: my ob/gyn and the surgeon that is doing my lap. Did they send them? No. Did the ordering doctor get his copy? No. Despite my being told that my doctor would have his copy by Wednesday or Thursday of next week, he only received it yesterday (Monday).

Did the screw ups stop there?

Heh. Not a chance

When I discovered that none of my physicians had the report, I asked that one be sent to me immediately so that I could ensure that my physicians received it in a timely manner.

This is where I discovered how screwed up things really were with this MRI facility.

Okay, imagine these measurements that were in the report.

My uterus measured: 7.8cm in length, 4.5cm in width, and 5.2 cm in transverse dimension.

Really? My uterus is 5.2cm thick? Holy crap. You would think the countless ultrasounds I've had this year would have picked this up. I should be "showing" with a measurement like this!

Now this is damned near hilarious:
"There is a 1.5 x 9.4 x 1.2cm intramural leiomyoma (fibroid) in the anterior uterine fundus."

The fundus is the top curved part of the uterus. Put these two dimensions together and I have a uterus with a 9.4cm cigar on top of it? Who put that there?

WTF? In all seriousness, this is just crap. Shoddy work by the MD that wrote up this report. If I had a NINE POINT FOUR CENTIMETER fibroid transversing the top of my uterus, my multiple REs would have seen it by now. I'm sure he meant to write 0.94cm, not 9.4cm, but why isn't someone doing a sanity check on these things? Am I the only person that proofreads things?

It doesn't end here though.

On page two he writes:

"There is a convoluted tubular structure at the right posterior lateral cul-de-sac that demonstrate increased signal on T1 - weighted imaging and shading on T2-weighted imaging. It measures 3.1 x 1.7cm. This may represent endometriosis possibly within the fallopian tube. A normal appearing right ovary is not seen."

Two problems here.

1. I do not have fallopian tubes. So what he is viewing, I have no idea.
2. I DO have a right ovary. It has a whopper of an endometrioma on it and causes me quite a bit of discomfort.

So, he thinks I have tubes, and I don't....and he can't find my blessed right ovary.

WTF?

More drama ensued from Dr. K at Yale. He got a bee in his bonnet about my age and is not wanting to do my EFT test because he thinks that, at my age, I should be doing donor egg. He seemed fine until he spoke with Dr. Indian at CU. So, something's amiss there.

I phoned Dr. Indian to see if he finally got the MRI report and he hasn't called back. Hmm.

Even more drama. Last week when I actually DID speak to Dr. Indian, he expressed that the clinic where he is at won't freeze my embryos, because of MY AGE. They also won't let me cycle when I turn 46 in November. This is messed up. I have just enough time to do 3 cycles. But I don't want to transfer anything into my uterus unless I am assured that my endometrium is fine. And Dr. K doesn't want to do the EFT test. I haven't yet found a surrogate, but I have a few good leads. And, then if I do the surgery, I'll need to sit out a month or so to heal.

I feel like the clock is ticking louder than it ever has before.

Despite my love for my clinic (CU in NYC), I feel that I have to research clinics and jump ship fast. I just can't cycle right now and put anything inside of me. It's a waste of embryos, time, and money. I need time. I need for someone to stop the clock ticking right now.

I am looking at Cooper in NJ, NYU, and Cornell. I'm also pondering the clinic on the UES called NH. They're out of network but they do 3 mini ivfs for about $8K plus freezing. They don't have FSH or age cutoffs. So these are the best in my local area. Tomorrow afternoon, after the madness of the day's meetings, I plan on finding a conference room at work, locking myself inside, and making the calls as fast as I can.

I have 5 months to have surgery, cycle, freeze everything, unless I can find a clinic that will let me cycle past the age of 45. NH will, but they're a little strange and I wasn't impressed with their facility. I did like the RE but support staff, such as lab, are one of the most crucial elements to a successful IVF.

Any suggestions ladies?

(And please please please, for the love of god, please don't say donor egg or adoption ... it's just not something I can do).

Pelvic MRI

Dr. Indian called today to talk about Dr. K and his test. They both think that at my age I should be considering donor embryo and somewhere in all of this they both seemed to forget that if my endometrium was deemed faulty through the EFT test, that it would still be bad for a donor cycle as well.

So I argued my case to get my lining tested by Dr. K and Dr. Indian agreed to order the biopsy for me. The only problem is that I will need to take another cycle off (and I just finished my period). We canceled my in-person WTF consult for tomorrow since we got it all done during today's call. (Saves me the $35 copay and having to take off from work early too). My other half is also having surgery tomorrow (heart shunt) and I didn't want to take off midday for an appointment when he might still be in the hospital. There's just too much going on.

I also did my pelvic MRI today - they used contrast so they can visualize a bit more of the vasculization of my nether region. I noticed when I went in that my paperwork said that I had fibroids and adenomyosis. Hmm, I've never actually been diagnosed with adenomyosis and I am supposed to be tested for it with today's MRI. That struck me as a bit odd to see on my papers. Almost a bit portentous.

So I'm nearly certain that a lap of some variety will result from this MRI. I already know that I have fibroids, endo, endometriomas...it's just a matter of setting a date to cut it all out. I reckon that taking another cycle off to heal from the surgery might make the timing work out just right, so there's no need for me to freak out over the time.

Save for the fact that my clinic just reminded me that they will only let me cycle with my own eggs up until my 46th birthday (in November) and, get this, they won't freeze any of my embryos at my age. Huh? They have a cutoff at 40 or 42 and I'm well beyond that. Dr. Indian explained that usually women at my age don't have enough embryos to freeze and that they only freeze blasts. OK. But I'm not freezing eggs because I have extras, I'm freezing them because I need to find a surrogate and, failing that, I need to ensure my lining is optimal. No matter: they won't make an exception. I'm starting to dislike my clinic today.

So I can't cycle all I want from now til my 46th birthday and stockpile embryos...I have to do fresh cycles with this clinic and either stick them into myself, or into a surrogate (the latter is what I prefer at this point).

I'm on the fence about this. I think I'll need to have a 2nd clinic on the backburner just in case I can't find a surrogate AND my lining is too bad to transfer into myself. It's always something. I never seem to be able to just cycle and not be trying to do 15 things at the same time. Ugh.

CD1: The Bitch is Back

One day off of the progesterone p-pops and she's back right on time. Egad. No rest for the weary. My poor nether regions are subjected to stress upon stress. My other half looks at the end of a cycle as the restoration of our physical relationship - while I feel like I just want to send my uterus off to Jamaica for a vacation.

Thanks for your comments about this last cycle crashing and burning. I know that with IVF#7 failing, I started to talk in earnest about using a surrogate. Then I didn't go through with it. I got all Pollyanna that I could do it on my own. Silly me. What was I thinking? I know we all want to trust our bodies to do what it's designed to do. I'm no exception to this.

As I mentioned a few days ago, I'm having insurance nightmares. BCBSTX (my cobra plan) said they're in 2nd position and Aetna says they're in first. It's actually true that Aetna is in 1st position, which means that after Aetna gets through paying for this last cycle that I'll have two cycles left.

TWO left. Gulp.

I truly feel my back is against the wall. I can afford to pay for a few cycles cash beyond that: Aetna has a deal with my clinic that they pass onto patients after they've exhausted their benefit: $5000 for a cycle including assisted hatching but, for me, since I'm using donor sperm and the sperm is of "good quality", ICSI is out of pocket. It doesn't matter to them one hoot that I have older eggs with thick zonas, or that nearly every sane IVF clinic out there recommends ICSI to all patients so as to boost fert rates. Imbeciles. So less than $7K for a full cycle including meds (which are covered at $15K/year without limit on years). I've paid much more in the past.

So it's doable to cycle a bit more beyond the two, but really...can I? Should I?

I'll be 46 in November. I have fibroids. Endometriosis. Endometriomas. I clearly have a major implantation issue going on. Julize, thanks for mentioning the EFT and beta-integrin tests. I think that the research is cutting edge. I truly do. I am just not sure that I have the time to do the treatment that they require, and in the case of EFT, I'm not sure what the treatment is as I'll explain in a second.

I've considered EFT and beta-integrin tests in the past but doctors I've chatted with say that the beta-integrin test can vary from month to month, so it's not hugely reliable. If you test in a "good month" you may miss a true underlying problem. I think that the cure for a bad beta-integrin test is lupron (2 months of it). Dr. Nezhat (leading endo surgeon affiliated with Stanford) cautions against the use or lupron for endo patients. So what to do?

Now on the EFT (endometrial function test) test that Dr. Harvey Kliman at Yale is doing - I'm not sure what the "cure" is for a bad EFT test. Yale put out an informative video on their EFT test, but doesn't say what the cure is. They list 5 reasons for an endometrium to have "gone bad":

1. endometriosis (check)
   
2. hydrosapinx (check, tubes were removed)
   
3. over or underweight (check. I could stand to lose a few pounds)
   
4. perimenopause (check, I'm 45 and have one nonfunctioning ovary. I'm near certain that I am in perimenopause)
   
5. stress (check, just had an 8th failure. I may feel calm, but who knows what my body thinks of it all?)

So I have every single one of the redflags for imlantation / endometrium issues that Yale has identified for putting my endometrium at risk for malfunctioning. I've fixed #2 by removing my tubes. I am a typically calm person but it's hard to gauge how my body is really responding to stress. I guess maybe testing cortisol / adrenaline levels might give me an indication if I am under more stress than I realize. I can lose weight and help #3. But #1 and #4 are vast unknowns. What can I do for endometriosis and perimenopause that will definitely change my endometrium?

My pelvic MRI is scheduled for next week. If they do surgery, they might be able to get the endo into a manageable state. The False Unicorn that I am starting to take (tastes horrible!) is supposed to restore balance to the female tract. Maybe I can help #1 and #4 a bit, but do I gamble my embryos on this?

I plan on calling Yale and asking to speak to Dr. Kliman, who is the author on the EFT write-ups, but hopefully he will (1) talk to me, and (2) have advise for what I can actually do.

So maybe there is hope. But still, despite hope, hope doesn't feel like it's enough anymore. I feel that it's a losing battle ladies. I honestly feel it's time for me to pay the piper and hire a surrogate. In the last 24 hours I've asked myself, "If I could just pay the $30K or so and have my own biological child right now would I do it?" The answer is yes. A resounding yes.

What is in my power is to make the best damned eggs my body can possibly make and then put them into a fresh young uterus where they are safe.

=====

Update: I think I've figured out the EFT test and subsequent treatment that Dr. Kliman at Yale is proposing. It's fascinating, it's complex, and it's convoluted. But I honestly think it might work. It makes perfect sense to my science-minded brain. But still, even if I explore this route, I'll be looking for a California-girl surrogate to carry my last embies.