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A Fascinoma but No Hippopotomonstrosesquippedaliophobia

By Bob Frascino, M.D.

May 26, 2010

So here I am once again heading for the MRI scanner. Anyone who has had one of these scans knows that getting an MRI is just plain creepy. I arrive right on time with my Peet's triple shot nonfat vanilla cappuccino in one hand and my appointment slip in the other. Here at "St. Elsewhere's" Diagnostic Imaging Center no one knows I'm Dr. Bob or Dr. Frascino or Dr. Anybody. I'm just Patient #76896328963127.

I then begin filling out the requisite pre-MRI screening questionnaire, which includes questions about "claustrophobia" (nope, not me); "bullets, shrapnel, or birdshot" (birdshot???); "body piercings" (hey, why do they need to know that if we've already been instructed to remove all body jewelry before arrival?); "tattoos or tattooed makeup" (tattooed makeup? Apparently Tammy Faye Bakker may have been a previous scan-ee); "freakishly large sex organs" (OK, I made that last one up, but really, the check-off list is impressive. After all, I am only here for an MRI, not to be confirmed as the next Supreme Court justice).

I have not finished checking all the boxes by the time the receptionist advises they are ready for me. The receptionist, I note, would have had a difficult time getting an MRI scan. She has a pierced eyebrow and lip, multiply pierced ears, and an impressive tattoo on her neck. She is of slight build, no more than 90 pounds, and dresses in goth black. (I can't help but think of the Lisbeth Salander character in Stieg Larsson's wildly popular trilogy.) She takes my clipboard and begins dutifully asking the remaining unanswered questions as we walk to the changing room.

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"Have you ever worked with metal grinding or had an injury to your eyes involving a metallic object?" "Nope," I reply; "No shrapnel in either eye." She doesn't smile.

"Are you currently taking or have you recently taken any medication?" "You're kidding, right?" I reply. "I gave you a list of medications when I arrived and you stapled it to the form. It's right there, see? It's a page and a half long." She shrugs and then continues.

"Are you pregnant or breastfeeding?" No shit! She really does ask me. I stop directly in front of her so she can't take another step and stare at her. "I'm just wondering," I say, "when was the last time you had the prescription on your contact lenses checked?" Again, no smile. I can't decide if she is on drugs or needs some.

She then asks, "Do you have any illnesses?" I say, "Sure, I have HIV disease and hippopotomonstrosesquippedaliophobia. (This really is a medical condition and astoundingly refers to a psychological fear of long words! Really it does. Look it up! Cool, eh? I don't really have it, but the chance to mention this illness is too good to pass up.)

I'm not sure if it is the HIV or the hippopotomonstrosesquippedaliophobia, but Ms. Draculina Receptionista looks exasperated with me and sighs in frustration. She leads me to a changing room where I am instructed to put on a pair of enormous blue paper shorts. A definite fashion faux pas with my trendy skin-tight Versace muscle t-shirt.

I am then greeted by an MRI tech dressed in hospital scrubs and who bears a striking resemblance to George Clooney circa the first season of "ER." "I'm George and I'll be your MRI technician today. Please be sure to remove all metal and I do mean ALL metal," he says with a smile and suggestive wink! Hmm. I wonder if the Clooney lookalike is coming on to me or perhaps Draculina has checked off something indelicate under the body piercing section of the interminable screening questionnaire.

George compliments my "fabulous T" while wanding me with a handheld metal detector device. He wants to know if I am a runner. "I wish I had your calves. Have you ever done a triathlon?" I think perhaps his next question may be "Do you come here often?"

I am then positioned in the scanner. Today my lower right leg is being scanned and George has to prop it into a rather uncomfortable position. As he positions and repositions my leg, he asks, "So what are we looking for today? With your muscles, it must be a sports injury, right?" I say, "No, it's a fascinoma." He looks perplexed and says, "Oh!" I know he has absolutely no idea what that means.

He quickly reverts to other topics, including Gold's Gym, Peet's Coffee, and Lady Gaga. The mere mention of coffee makes me realize my triple shot cappuccino is starting to kick in. I wonder should I ask if I can take a leak before getting started, but unwisely I decide no. How long can this take, right?

Next come the earplugs and headphones and lots of instructions about "you must remain still; don't move; don't even think about moving." Hmm. Ever notice that when someone says not to think about something, suddenly it becomes impossible to think about anything else? George may as well have said, "Don't think about two transgender midgets with cleft feet having sex on a pink elephant at a Sarah Palin Tea-baggers' rally." So now I can't move; my leg hurts; and my bladder is reminding me I should have stopped at the men's room. Then the torture really begins.

From a remote booth out of my sightline, George says, "OK here we go." And through the earphones comes a muzak arrangement of Clair de Lune by Claude Debussy performed by some new age pseudo-musician. Clair de Lune is one of my favorite compositions to perform. (I really did consider a career as a concert pianist prior to deciding on medical school. I still give concerts occasionally.) To me this rendition of Debussy's masterpiece is worse than nails scraping on a blackboard. I feel like my ears are being removed with a cheese grater.

For added musical effect, the scanner then kicks in with a series of sequential percussive noises that resemble a pile driver on speed (bam-bam-bam-bam-bam) and a psychotic rapid fire staple gun (zap-zap-zap-zap) all punctuated by a jackhammer on steroids (boom-boom-boom). Suddenly I find the entire situation unbearably hilarious and have an uncontrollable urge to burst out laughing. Don't think about giggling, I tell myself, which of course turns my chuckle into an uncontrollable chortle, and that in turn reminds me all the more that I need to pee. Suddenly I have become Mary Tyler Moore in the Chuckles the Clown funeral episode. Somehow, with only a few admonishments from George about not laughing, I make it through the scan.

As George is detaching me from all the Velcro-bondage accoutrements that are holding my leg in place, he asks, "What was so damn funny? You had us all laughing in the control room too." "I'll explain some other time, George. Right now I have to hit the men's room." "Maybe over coffee?" George asks hopefully. I smile and point to my wedding ring. "Oh," he says, and then asks, "So what exactly is a fascinoma? Some kind of sports injury?" I tell George a fascinoma is medical slang for a condition everyone finds fascinating, but no one knows anything about. George is extracting my leg from the final bracket when I tell him mine is an HIV fascinoma.

George freezes momentarily and then quickly retracts his hands from my leg, just like when the Wicked Witch of the West recoiled her hands when, while trying to take Dorothy's ruby slippers, she got zapped by the fancy footwear in The Wizard of Oz.

Well I guess the Clooney lookalike won't be asking me out for coffee after all.

Isn't it amazing that even 29 years into the pandemic the mere mention of HIV still has the power to instill such instant and irrational fear? George obviously hasn't seen my pre-MRI screening questionnaire or medication list or talked with the Lisbeth Salander lookalike (who was still befuddled by hippopotomonstrosesquippedaliophobia).

I wonder how different our interaction would have been had he realized my positively charged status before the scan? Very, I would imagine. Perhaps he would have worn gloves to touch my leg. Certainly he wouldn't have asked me out for coffee.

On my way out of the imaging center I thank George and give him a business card identifying my Dr. Bob persona and this site. I tell him he can learn all about fascinomas and other HIV-related issues on TheBody.com, and encourage him to check it out.

There is a good chance I'll need another MRI scan in a few months. Will George be my technician? Will the receptionist have any new tattoos and piercings? Will I remember to forego the pre-scan coffee? Will HIV stigma continue to be alive and well? I say there's a good chance the answer is yes to all the above.

Want to get in touch with Dr. Bob? You can reach him through his "Ask the Experts" forum, by sending a message to the Robert James Frascino AIDS Foundation, or by leaving a comment for him below. (If it's a private message, or if it includes personal info such as your e-mail address or phone number, we won't post the comment, but we will send it along to him.)

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See Also
HIV Medications: When to Start and What to Take -- A Guide From TheBody.com
More Viewpoints and Personal Accounts on Choosing and Working With HIV Specialists
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Reader Comments:

Comment by: Gwen R. (marion,ky) Mon., Aug. 9, 2010 at 7:36 pm EDT
hee hee hee hee hilarious and love the way you write about stigma how heartbreaking "without adversity i would be nothing" yea rite it would be more fair wouldn't it? ive had similar experiences i actually had a psycologist where gloves just to talk to me , i had a college counselur ask why even go to school, and ive been left in doctors office for long periods of time why everyone ran around whispering and each making up differnt reasons to come take a look at me,,see i am a 31 year old attractive women so its weird but i take very good care of myself,,anyway im so proud you are a doctor take care and dont ever quit sharing your stories
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Comment by: David (West Valley City, UT) Tue., Jul. 13, 2010 at 7:28 pm EDT
I simple have thank you Dr. B. for your endearing wit and charm. Your observation bring joy and lightness into my life.

Very fond regards, DSH
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Comment by: Rece-1030 (St.Louis, MO) Sat., Jun. 5, 2010 at 4:14 pm EDT
Dr.Bob,

I am sorry that people still are so flippin dumb after all this time. I say this cause I really enjoy reading your blogs and have become a groupie kinda like "MikeA" : ) I understand that the jacka$$es that are out there are just rude and it pisses me off. My mother-in-law has faught this from 1987 and many people in her family wont even hug her. It breaks my heart and brings me to the point of wanting to physicaly to hurt them. I have taken her to the ER before and the nurses do certain things that are shady like put gloves on to take her temp and vitals...WTF. She tells me honey people just dont know any better...I thinks that is BS. THANK YOU. THANK YOU. THANK YOU, Dr.Bob for all that you do to help people that are fighting HIV/AIDS.

Luv ya from the Lou !

Rece
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Comment by: Robert Cahill (NYC) Tue., Jun. 1, 2010 at 1:00 pm EDT
I'm a case worker with an agency that serves low income clients with HIV and AIDS. I'm new to the field having started with this agency in September 2009. I love working with this group of people; there are challenges like working with any population, but I really enjoy my interactions with my clients, whatever It is that we are working on.

I am continually disturbed by the reactions that folks have to my work and to the people that I work with and serve. This disease is no different than any other life threatening disease in many ways. The perception of this disease remains unchanged, it seems, since the advent of the medications that allow patients live with this disease. I think too many people feel as if AIDS disappeared once it stopped being a death sentence soon after contraction at least in the public's perception. Lately it seems that the only mainstream press coverage of HIV and AIDS is about less funding to prevent AIDS internationally. Almost no one is talking about the many people domestically who are trying to survive with this disease, the many people who are still contracting HIV on a daily basis, and the many people who are still at risk of contracting it.

Thank you Dr. Bob. Good luck with your hippopotomonstrosesquippedaliophobia. I would say avoid Scrabble and crosword puzzles. Good luck with the fascinoma as well. I've got clients with those too.

-Rob
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Comment by: josh (Portsmouth, NH) Tue., Jun. 1, 2010 at 10:15 am EDT
Dr. Bob,
it still amazes me how much 'health care' workers DON'T know about HIV, after all this time. When I told former co-workers (mind you I was managing in a redidential facility where universal precautions were preached, mandated, and beaten into every old and new employee) that I was changing jobs to do case management with for HIV + individuals, the first question I was asked was : " Aren't you scared you're going to get it from someone at work?"

Really?

My canned response, " Well I'm not planning on sleeping with anyone, and I'll wear condoms when I shake hands with folks."

Honestly I was astonded by the 'ignorance' by college educated, health care professionals (allegedly at least). Of course I'd have to take the opportunity to do some minor education on transmission. I think that the head in the sand ignorance is one of the many 'fascinomas' of HIV.
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Comment by: Gee (Israel) Mon., May. 31, 2010 at 5:03 am EDT
We live in a primitive world...
U r one of the enlightened souls
I doubt HIV is the cause...
respect DR BOB....
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Comment by: Raymond (Manchester, NH) Sun., May. 30, 2010 at 7:55 am EDT
Well, Dr. Bob, your adventure is a good reminder about stigma for those in urban and "urbane' regions. For some of us, similar and other more hurtful and degrading incidents happen on a more regular basis. A consulting physician, just recently, examined me through my clothes, never once looked me in the eye and kept the laptop screen fully and directly between us the entire visit. Finding good, compassionate, affordable and professionally delivered HIV care is an ongoing struggle. Indeed, we have a state health director, overseeing prevention programs with increasing infection rates, looking to reduce the ADAPO budget becasue it is "aidsism." Go figure. Thanks for aall you do for us.
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Comment by: Dave (New Zealand) Sat., May. 29, 2010 at 5:52 am EDT
Bob,

You write well! I enjoyed the piece immensely. It's so aware. You are very perceptive. Not all medics are. Some are "dumb" and make one despair.

A month ago I dropped a glass salad bowl and slashed my hands. Blood everywhere. One cut needed stitches. I told my partner I would not go to the local doctor, it would just have to heal naturally! Why? Because at the local practice my HIV status has caused behaviour which is simply unnerving. For example, the nurse refused to take my blood and had the doctor do it. The doctor said, "So you've not developed full-blown AIDS yet?"

You experienced the same when that MRI tech abruptly lifted his hands from your body and was no longer so eager for coffee.

Good for you for not just walking out and getting on with your life but instead giving him your card (thereby challenging him to think and evaluate his reaction) and for directing him to TheBody.

In a sea of greys there has been one moment of warm light in my experiences of medics. I had a consultation with a gut surgeon regarding whether or not to have my gall-bladder out. I didn't know whether it would be worth it. He said there was only a 50% chance it would fix my gut problem. Suddenly he added, "By the way, as for your HIV status, that's irrelevant, that's our problem, for us to deal with, don't let determine whether or not you have the op".

Do keep writing. And do ignore the comments of the few unaware and illiterate.

Dave (55-year-old professional, partnered with an ex-medic).

P.S. Thanks for the tip on how to avoid come-ons when one is partnered, i.e. smiling and pointing to the ring! I must remember.

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Comment by: Ted (Louisville, KY) Sat., May. 29, 2010 at 2:36 am EDT
I've had fellow HIVers tell me they were treated poorly at doctor's offices or made to be the last patient at the dentist's office. However, I've had really good experiences so far. I often think some health workers are being too relaxed. My dentist has gotten my blood on his mask and pushed his glasses back up with his blood covered gloves. I've had the people who take my blood use their bare hand to put the little cotton-ball on. I know it would be very, very, very unlikely something would happen. I would have to be squirting out blood. However, I wonder how I would react if it was the other way around. I know I wouldn't be afraid of casual contact. I wonder how I would react around blood though.
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Comment by: bklyn1997 (Birmingham, AL) Fri., May. 28, 2010 at 9:04 pm EDT
Well Dr. Bob, I have been experiencing a very difficult day when I came across your story, your very funny story. It dawned on me that I haven't laughed, or even smiled for that matter, in quite some time. Now if I could just express myself with half of your humor and a quarter of your eloquence, I would be a very happy camper. I have had this disease for many many years. Technically, I am a young woman, but physically and emotionally, I am 200. I can honestly add that now I have something to look forward to that will make me laugh without fail in my future. And that would be whenever I hear the name George, and for that I thank you sir. You have made my day. I remain truly Georgified.
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Comment by: brent (Calgary AB) Thu., May. 27, 2010 at 10:07 pm EDT
Funny story

I recall going to a massage school. They had students doing massages at a great price.

I filled out a form - it had a question if I had HIV. I answered that I was +ve.

I noticed a bit of a commotion after I handed the form in. I heard the instructor saying "It's not a problem", followed by several "I don't care - I'm not touching him."

After quite some rime I got a lousy massage through rubber gloves. I tried to talk to the young masseuse but she was silent. My donation was small.
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Comment by: Jimmy (Arizona) Thu., May. 27, 2010 at 8:23 pm EDT
My, my, my. So many caustic responses. I would imagine that the tea being served at some parties is terribly bitter. Tsk, tsk.

Dr. Bob, I get it. While subtle reactions to my status don't happen often when I'm dealing with medical professionals, they can and still do. Some folks are acutely sensitive to nuance in communication. Your writing skills tell me that you are usually well aware of what's going on around you at any given moment. Consider, what would it be like if you didn't quite get what a patient was tying to tell you?
If you think your MRI experience was bad, try a FMRI. Various, very loud, very annoying sounds are played through the earphones so that a neurologist can see where your brain lights up as a response to aural and visual stimulus. Oh, did I forget to mention the strobe light? Or that all this went on for nearly an hour in my case? But thankfully, the baby Jesus kept me from going completely nuts.

I am reminded of a t-shirt I saw recently which read:

"MOST OF THE PEOPLE I KNOW ARE AVERAGE".
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Comment by: MikeA (DC) Thu., May. 27, 2010 at 7:01 pm EDT
Me again. I read some of the comment, okay, all of them, since there aren't many right now.

Self-Stigma? WTF? Really?

A doctor can't say what stigma is, or feel it? He isn't allowed to give a card? (Ok, some shrink, will say, he gave the care to deflect his overtly desires to be pillaged like the Yankees pillaged Atlanta, but really!! You sound more like one of the early morning cleaning crew at a bathhouse on Sunday morning!

I'll defend Dr. Bob because he is a sweetie pie, as American as my Aunt Sue's coffee right after supper and her fresh apple tarts, when we use to sit on her front porch before she finally got A/C.

Some health care staff care more about themselves, even those in the HIV field. Why, even here where I live, I have to remind myself, some of them are no better then a West Virginia cousin because both of them have parents who are siblings to each other and by bejesus, I got to keep reminding myself of those facts, like I'm sure Dr. Bob does!
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Comment by: MikeA (DC) Thu., May. 27, 2010 at 6:47 pm EDT
Ah, Dr. Bob, My all time favorite to read and fantasize about. If I lived any closer I would be a groupie. I know, I know, we are separated by a wedding ring. But, gold can be melted down, like the witch. My thoughts about Dr. Bob, will last much longer, I am sure.

Keep up the excellent writing Doc!
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Comment by: P (Portland Maine) Thu., May. 27, 2010 at 4:31 pm EDT
While I enjoy thebody.com, and your posts, why is this called "Even HIV-Positive Doctors Sometimes Face HIV Stigma"? Are doctors better than others and therefore exempt? A hot guy pulling his hand from your leg is your idea of 'stigma' - poor you. Almost makes me want to unsubscribe. Lucky you have insurance to pay for that MRI - and how condescending to flash you card showing you are a physician, and telling him to visit this site, instead of having a conversation.

Pathetic. The poor doctor did not get the attention he thought he deserved. I weep for you.
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Comment by: Jeff (Grand Rapids, MI) Thu., May. 27, 2010 at 2:48 pm EDT
Dr. Bob,

I enjoyed your post today. I work in Health Care and often wonder if my co-workers would be as kind to me if they knew I am gay and poz. It bothers me to think probably not, but ignorance abounds and well, they don't need to know! They aren't treating me! :)

Have a great day.

Jeff
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Comment by: Ted (Baltimore, MD) Thu., May. 27, 2010 at 2:34 pm EDT
Dr. Bob,

I know the stigma is still alive and well, but did feel that I needed to counter your story with a very different response. I have had to see several medical professionals in the past few months for non-HIV related issues. This has included numerous blood tests, oral exams, MRI's, CT scans and an EEG. HIV disclosure was a part of each of these. In every case the response could not have been better. I was uniformly treated with respect and never noted even any minor reaction to my discloser. A neurologist and ENT changed the line of questioning somewhat, but only to be certain that there was no correlation between my symptoms and HIV infection. An oral surgeon went online to check some of my meds to be certain there was no drug interactions with the antibiotic he was going to prescribe. Having been poz for 20+ years I've definitely seen a major positive change in the reaction of non-HIV medical professionals.
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Comment by: Bobby (Atlanta, GA) Thu., May. 27, 2010 at 2:20 pm EDT
This is hilarious but so serious too. Thanks for the article.
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Comment by: Frank Amsterdam (Amsterdam, The Netherlands) Thu., May. 27, 2010 at 2:01 pm EDT
"Dr. Bob: Even HIV-Positive Doctors Sometimes Face HIV Stigma":

I really admire your answers on the forum. But, in this column I do not see - my fault obviously - where the HIV-stigma is?

I know the clumsiness of health care staff, the moronic questionnaires (who are for all people) and the thoroughness when you do an MRI because of the dangers of metal, but the only thing offensive is a nurse coming on to you.

"I wonder how different our interaction would have been had he realized my positively charged status before the scan? Very, I would imagine. Perhaps he would have worn gloves to touch my leg. Certainly he wouldn't have asked me out for coffee."

This is more self-stigma as I see no real hiv-stigma-related communication or treatment here.

Or, am I crazy?

Nonetheless, the events are written down hilariously and very relatable to.

All the best,
Frank
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Comment by: Raheem (Toronto) Thu., May. 27, 2010 at 1:05 pm EDT
Never mind I googled it and found out it doesn't exist lol now I feel embarassed.
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Comment by: Raheem (Toronto) Thu., May. 27, 2010 at 1:03 pm EDT
Hey Dr Bob,
I'm one of your anxiety wracked possibly HIV positive constant readers of your forum. In any event sadly enough I am reading thebody.com again on my time off and just so you know lol HIV fascinoma is not mentioned on the site at all aside from this blog.
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Bob Frascino, M.D., was President and Founder of The Robert James Frascino AIDS Foundation. He had been an outspoken, popular expert in TheBody.com's "Ask the Experts" forums on safe sex and fatigue/anemia since 2000. Once a Fellow of the American Academy of Allergy, Asthma, and Immunology, and the American Academy of Pediatrics, Dr. Frascino served as Associate Clinical Professor of Medicine, Division of Immunology, Rheumatology, and Allergy, at Stanford University Medical Center from 1983 until 2001. He was a member of the American Academy of HIV Medicine and had also been a distinguished member of the executive boards of numerous state and regional associations.

We're inexpressibly saddened to share the news that Dr. Frascino passed away unexpectedly on Saturday, Sept. 17, 2011. Click here to read more and to share your thoughts.


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