Thursday, March 25, 2010

False Alarm

It's funny, in an ironic kind of way. 

After 2.5 days of anxiety over the thought of a cerebral angiogram, after getting it pre-approved by my insurance, after getting instructions from the hospital about the procedure, and getting registered with the hospital for the procedure (all in separate phone calls), I got a call from my neurosurgeon's assistant saying I needed to call the hospital and get rescheduled because the machine they needed to use wouldn't be available at 8 a.m. as I was scheduled. 

Turns out, what I'm having done on Friday is not a cerebral angiogram. Instead, I'm essentially having a CT version of the MRA I had earlier this month. 

Instead of having to be there two hours before my appointment, I'm supposed to arrive about 10 minutes before it. Instead of a procedure that takes an hour and requires me to lie flat for six to eight hours, it will take about 10 minutes and I can leave as soon as I'm done. 

Apparently, someone at the hospital had sharp eyes and called the neurosurgeon's office to verify that the very invasive cerebral angiogram was the procedure they really wanted me to have. 

No one would tell me whether the error was the neurosurgeon's (maybe checking the wrong box on a form?) or his assistant's. But I'm grateful to whoever it was who questioned the procedure for me!

I was so happy I was giddy with it. 

Mind you, depending on what the CT shows, there's a chance I'll end up needing that cerebral angiogram anyway. 

But not this week. And for now, that's good enough for me!

p.s. Thank you all so much for the warm wishes and good thoughts. I appreciate those more than y'all know.

Wednesday, March 24, 2010

So Much For That Idea

Wasn't it just like a week ago or so when I announced I was tired of all these tests and procedures and doctors?

I was seriously considering giving up, at least for awhile, the search for a diagnosis (and treatment!) for my mystery illness.

But then my internist sent my MRA images and report over to the neurosurgeon that I've consulted in the past about my unrelated back problems. I didn't hear anything for over a week, and I figured that meant he thought it was no big deal. Apparently, I was wrong about that.

On Monday afternoon, I got a call from the neurosurgeon's assistant saying that he wanted me to have a cerebral angiogram and that she had already cleared it with my insurance company and sent the order to the nearby hospital where the procedure would be done. (Note: the link above is from a different local hospital, not where I'm having mine done. But I thought it was very well explained.)

I bumped into my neighbor, Joan, and told her I was feeling a bit panicky about it. Because, y'know, that's my brain we're talking about. They're going to stick something in my femoral artery in my groin and somehow push it all the way up to my brain.

She then listed off all the people she knows whose mothers died of aneurysms, and we both agreed that we did not want to risk adding Ellie to that list.

An hour or so later, I got a call from the hospital scheduler and got fit into somebody's schedule on Friday morning.

Early morning. Day after tomorrow.

I have to be there at 6 a.m., and the procedure is scheduled for 8 a.m. It should only take about an hour, but then I'll have to lie perfectly flat for six to eight hours before I can go home. I'm figuring that after having gotten up so early to be there, I'll probably snooze my way through those hours of lying flat. :-)

I spoke to my internist about this, and my nervousness, last night. While she was a little surprised that the neurosurgeon decided to the angiogram without doing a second MRA first to confirm the existence of the aneurysm, she said she thought I should go ahead and do it because he wouldn't have ordered it without thinking it was necessary.

So if I understand things correctly, and that's a pretty big if, it's pretty much just a look-see on Friday. But if they think the aneurysm is a problem, they can either put a stent in or do a surgical procedure that's more invasive. I'm pretty sure that neither would be done on Friday unless things went horribly awry. (And I've already promised Scott that nothing will go awry.)

I will try to post late Friday or sometime Saturday just to let y'all know everything went fine. But I wouldn't mind folks keeping me in their thoughts and prayers that everything goes as it should.

Thursday, March 18, 2010

And Now For Something Completely Different ...

Some of you may have noticed that I can be pretty opinionated. And I'm only rarely shy about sharing my opinions.

So one of my favorite things to do has been to participate in focus groups. Getting paid to share my opinions -- how can there be a down side? I actually had a blast pre-mystery illness at a focus group for the IRS on how to simplify tax documents. (They clearly did not listen to our input! Or at least haven't implemented it yet... but they paid $125 in cash at the end of the evening!)

These days I can't commit to the two-hour local focus groups, which tend to be held in the evening on the other side of Portland. So I've enjoyed occasionally participating in online versions. Yes, there's usually a small bit of compensation, but it's never been about the money for me.

I started participating sometime last year in a group called WEGO that is aimed at "health activists," people who blog, tweet, Facebook, etc., on heathcare issues. I think it was Jenni of ChronicBabe who tweeted about a survey on WEGO that people who qualified for the full survey would get an Amazon gift certificate, maybe $10? Who wouldn't be up for that? I trusted her that it WEGO was a legitimate group, and I was pleased when I got the email with my Amazon code. (I think the topic was on allergies ... but it's been long enough that I haven't a clue.)

I ended up registering on WEGO, and participated in my first "insight group" a few months back. Essentially, it was a focus group held online. Participants needed to be able to be on a conference call and logged into a website to see the slides, all at the same time.

It's fun, even if it tires me out.

So when I got an email asking for volunteers for another WEGO "insight group" regarding DNA testing that can be done from one's home, I thought it sounded intriguing. Instead of the usual Amazon gift certificate, this time the compensation involves a free DNA test, which they currently list on their website as retailing for $400.

I'm kind of excited about it. I participated the conference call last week, and am now waiting to receive my test kit from Pathway Genomics, which should arrive any day now. It will take four to six weeks for the results.

When I browsed the list of diseases/conditions they will test me for, I already know my results on a number of them, thanks to genetic testing I had done when pregnant with my daughter. (As an Ashkenazi Jew, there's a number of scary things I could have carried genes for. Luckily for Ellie, I didn't.)

But it will be interesting to see what, exactly, comes back on my report, which I will undoubtedly share here on my blog.

One of the more interesting things the company promises to provide is information on my DNA's drug reactions and adverse reactions. In some ways, I think that potentially will be the most valuable information I get out of it.

I'm also looking forward to seeing what the genealogy report comes back looking like.

Wednesday, March 17, 2010

The Official MRI Report

Got this in the mail today. Despite normally being pretty good for a non-science, non-health industry person, there's a number of phrases that just don't parse for me. Good thing I have a followup appointment tomorrow with my internist.

MRI Brain done 3-6-10

Findings: Two punctate foci of abnormal FLAIR signal involves the subcortical right orbital frontal gyrus, unchanged compared with prior examination. There is sparing of the posterior fossa and brainstem. Brain volume, morphology, ventricles, and basal cistern are otherwise normal. No evidence for abnormal gradient echo signal or restricted diffusion. Sagittal midline structures structures appear otherwise normal. Motion artifact is somewhat limiting however on this sequence.

Post contrast sequences demonstrate no evidence for abnormal enhancement.

Impressions: Stable foci of abnormal T2 signal within the right frontal lobe. Differential consderations would include sequelae of migraine headaches, remote trauma, or early microvascular disease changes. These do not have a classic appearance for multiple sclerosis.

MRA Brain

Findings: There are no significant stenoses or vascular malformations. There is a small outpouching inferiorly from the terminal segment of the right internal carotid artery measuring approximately 2mm.

Impression: Possible 2 mm inferiorly projecting aneurysm from the inferior right terminal segment of the internal carotid artery. No other significant stenoses or vascular malformations.

Well, I guess now I understand why my internist had a little trouble on the phone deciphering some parts of the report. :-) Try reading some of the weirder sentences aloud; doesn't it make you wonder how the heck the radiologist was able to spit out those phrases as he dictated it? They're totally tongue twisters!

I'm mostly happy when there's nothing scary in a test result, especially when they're looking at my brain.

But I still feel like the left side of my face, including teeth and part of my tongue have been numbed with novocaine that's only partially worn off. And I'd really love to know why (as long as it comes with a simple treatment plan).

I was watching the TV show Mystery Diagnosis today, and actually felt mildly jealous that those women's mysteries had been solved. (The episode included two different women with different, unrelated medical conditions.)

Not that it worked out so well for them. One woman had to quit her job as a special-ed teacher to keep her condition from flaring and potentially killing her. The other woman had a brain tumor removed, but she still has numbness and prickling on the entire left side of her body due to the nerve damage caused by the tumor.

Monday, March 15, 2010

The More They Test, The Less We Know

I'm starting to think that Doctor D had a point when he wrote that sometimes, when you have a mystery illness, at some point, it's time to stop the testing because you keep turning up red herrings that require yet more tests that risk causing harm all by themselves.

It's been a frustrating week.

The biopsies from my colonoscopy and endoscopy all came back benign, including the polyp. Good news, I know. But no answer on what was causing the pelvic pain and then the bloody diarrhea. My GI doc says that happens sometimes. And if the bleeding recurs, perhaps they'll 'scope me faster in hopes that they can find the cause. I follow up with him on April 14.

I got a call this morning from my internist with the results of my brain MRI and MRA. I do not have a copy of the radiologist's report yet, but she said that other than the two foci that were discovered on last year's brain MRI, there wasn't anything significant. (I guess the report does point out mild to moderate sinus disease, but I already knew about that.)

The MRA, which is essentially an angiogram via MRI, may have shown something. Or maybe not. And even if it did show something, it doesn't have anything to do with the bizarre symptoms I've been having since late February.

My internist says the MRA appears to show an aneurysm in my carotid artery. If it even exists, it's teensy tiny. Literally. The radiologist said it was about 2 millimeters. Seems like it's about as small as it can be and still be visible and measurable.

My internist says she has had other patients who have had what looks like a carotid artery aneurysm on an MRA, and it turned out to be nothing. But, just to be "safe," she's referring me back to the neurosurgeon I've seen previously for back problems.

For such a small aneurysm that isn't causing definite symptoms, it's apparently typical for doctors to order "watchful waiting" and the patient just keeps repeating the test every six months so they can monitor it.

In some cases, the doctor will fix the aneurysm surgically. My internist thinks it's unlikely that mine, if I have one, would require that at this point.

Meanwhile, I'm wondering what, if any, benefit I'm getting from doing these tests, these endless rounds of tests and visits to various specialists. They suck up my time and (limited) energy. They're a huge drain on our finances, even though I'm lucky enough to be fully insured. Meanwhile, who knows how much radiation I've been exposed to these past few years with the various CT scans and x-rays?

As Doctor D says, "Even perfectly correct work-ups carry real risks and harm real people
." He advocates that sometimes "benign neglect" is sometimes the best answer. (I suspect that the more modern term is "watchful waiting." Although then again, the modern watchful waiting involves lots of monitoring tests. So maybe not so much.)

So what would you do? Would you just accept that your illness hasn't yet been discovered and concentrate on improving quality of life? Or would you keep making the rounds of doctors and tests in the hopes of finally attaining an actual diagnosis?

Sunday, March 7, 2010

Wishing For Clear-Cut Answers

Starting a gluten-free trial a month before my colonoscopy and endoscopy probably wasn't the most brilliant of timing.

But the bloody diarrhea was scary, and changing my diet was one of the few things I could control.

I seem to have a knack for making these decisions on the spur of the moment though, and it didn't take much persuasion to decide to do a gluten trial the day after my tests.

In hindsight, it would have been a good idea to wait until my throat wasn't sore from the endoscopy and my bowels had regulated after being purged in preparation for the colonoscopy.

Instead, I had a regular cupcake on Thursday evening with Scott & Ellie, and on Friday I went fully back on gluten.

Now, if I'd had a clear-cut improvement from going gluten-free, I wouldn't have tested adding gluten back into my diet. But it's all so subjective, and my condition can vary so much from day to day and week to week anyway, we really weren't sure. Scott, who had encouraged me to try going gluten-free was very skeptical that I'd had any improvement during the month I tried it.

So I added gluten back in, and then wondered if the killer reflux was so intense because of the gluten, or because my throat was raw and my esophagus had been biopsied and not fully healed yet.

Today, my gut is very unhappy, and I don't know whether it's the gluten or simply a coincidence.

In my case, it's all so subjective in trying to figure out whether gluten is playing a role. I know that's not true for folks with celiac disease and severe sensitivities. But I wonder if I'm just one of those people in the gray area on whether being gluten free is helpful or not.

I've seen some people describe getting accidental gluten via cross contamination or poorly labeled foods, and having very clear-cut reactions to it. But for me, it seems like nothing is ever simple and clear cut.

And yes, I will be going back to a gluten-free diet, at least for awhile longer. I'll probably do another test of gluten at some point in the future, but I'll try not to make that decision on a whim. Hopefully that will make the results more definitive.

Thursday, March 4, 2010

Happy Birthday To Me ...

I spent my 43rd birthday getting 'scoped from both ends, an experience I'm hoping I won't have to repeat for quite awhile.

The most exciting part of the experience was discovering that my gastroenterologist's office has changed its preferred sedation from Versed and Fentanyl to Propofol.

Yep, I had the same drug for sedation that helped kill Michael Jackson. But unlike the King of Pop, I had a nurse-anesthesiologist with a stethoscope on my throat, monitoring my breathing the entire time, as well as a heart monitor and oxygen saturation monitor.

My major disappointment is that my doctor was unable to locate the source of bleeding in my colon. That's not entirely unusual, since it's been a month since the bleeding stopped and mucosal linings tend to heal quickly. But it's disappointing. He did find a single, 7mm polyp, which he removed and will have tested.

I had to laugh when he told me afterwards that it was very unusual for someone my age to have any polyps. Because, of course, the only people having colonoscopies in their early 40s are people who have some symptoms prompting the 'scopes. So how would doctors know that it's unusual to have any polyps before the screenings usually start at age 50? I mean, they know colon cancer is unusual before age 50, but it's not like anyone knows what's going on in the guts of a typical healthy 20-, 30- or 40-year-old because they don't get to look at them.

I think my GI doc was more surprised to find some suspicious redness in the bottom of my stomach. The medical description is "gastric mucosal abnormality characterized by erythema in the pylorus." In English, that just means that the tissue looks red and irritated and possibly inflamed.

In hindsight, I suspect that's somehow related to the scar tissue I have had from a series of peptic ulcers in 2000-04. But I didn't think to ask if it was, and he didn't mention my scar tissue. The photo of that part of my stomach was clearly irritated enough that when he flashed the page of photos, I immediately pointed to it and asked what was wrong with it. I'm hoping it's not a sign of a developing ulcer because my stomach (the actual organ, not my abdomen) has been acting up lately.

The doctor told me he also took a number of biopsies from various places in my esophagus, stomach, duodenum, colon and ileum because, he says, sometimes when an autoimmune disease is involved, the tissue can look fine but still be affected.

Miscellaneous details that may or may not be of interest (and some of which is undoubtedly TMI):
  • No one warned me that toward the end of my bowel prep that it would feel like I was peeing out my butt. Very weird sensation!
  • I didn't take all of the bowel prep stuff, but got completely cleaned out anyway. I drank about 40 of the 64 ounces I was supposed to take, and probably could have taken less.
  • A friend, Jeanne of Chronic Healing, had recommended that I mix the huge dose of MiraLax with the blue Gatorade because it's the least likely to cause nausea. When she forgot to mention was that the Gatorade would come through my body with the color intact. When combined with urine in the toilet, it was a lovely shade of teal.
  • The weirdest thing that happened -- even weirder than looking into a teal toilet bowl -- was when I discovered my morning allergy pill floating in the toilet, having gone through me unabsorbed.
  • Cottonelle flushable wet wipes are a godsend.
  • Propofol left me way less loopy after the procedure than the Versed and Fentanyl used to. But I still came home and took a nap for most of the afternoon and early evening.
I should have the biopsy results next week.