bengt-erik norum

about a month ago, i had a diagnostic esophageal endoscope (which has the coolest long name ever: esophagogastroduodenoscopy). i've known about my gastro esophageal reflux disease syndrome (GERDS) for the last 10 years or so, but suspect i've had it much longer, as i remember having difficulty swallowing from the time that i was 13 or so. this time was supposed to gauge my reaction to the proton pump inhibitor drugs (aciphex) i'm on and any improvement that may have resulted.

the procedure is pretty pleasant, actually, in that you're partially sedated (read: "totally out of it"). it's done as an outpatient procedure, onsite, in this case. there's a surgical center in the basement of the palo alto medical foundation and i scheduled the thing over the phone. showed up at 6am, changed into the "humiliation gown", was given an iv (in my hand, as usual -- my arms seem to hide blood vessels when i'm nervous) and read a magazine for 25 minutes or so. the nurse and anesthesiologist introduced themselves and rolled me into the operating room. they made some jokes about one of their coworkers, "colin" (pronounced "colon"), and tried to get me to laugh. about 5 minutes later, i was given a heavy sedative and a narcotic through my iv. off to lala land. i normally don't like drugs that numb my senses in any way (ok, with the exception of alchohol), but the combination of the warm blanket they'd given me and the drugs they pushed into my bloodstream managed to make me blissfully happy to be lying on a hospital gurney and having a camera shoved down my throat. in each of the 6 instances i've had it done, the drugs have given me medically induced amnesia and retained no detail about the procedure, this was no exception. basically, they have you swallow a large (dime sized) tube with a light and camera on it and look around your insides.

the during my scope, my doc took a number of biopsies. he was pretty annoyed that none of my previous gi docs had taken biopsies and was keen to get them. he suspected that i either had bacteria called "h. pylori" present in my stomach or was having an allergic reaction to food in my esophagus. biopsies would have confirmed either of these cases.

immediately following the scope, in the recovery room, i had a conversation with my doctor. i don't remember a word he said, but appearantly he told me that i had a large hiatal hernia and some acute ulceration in my stomach. he wrote these words on the memorabilia photos of your insides they send you home with. i was pretty spaced out for the rest of the day and spent most of it sleeping.

monday of the next week, he called my cell at lunch and asked if it was a good time to talk. i told him it wasn't, as i was interviewing a candidate for one of my open jobs, at the time. i agreed to call him back at 4:30, that afternoon. at 4:29, i called back and was told that he was running behind, but would return my call. no call that day. no call the next day, so i called back at 4:30 and left voicemail for his nurse.

that wednesday afternoon, he called me back and talked me through the results of the scope, again. he told me that i had a segment of barrett's esophagus (also known as intestinal metaplasia) that he'd visually seen, but waited for biopsy results to confirm. i'd read about barrett's, but hadn't really considered it a possibliity, since it was usually accompanied with the words "rare" and "extreme untreated cases of reflux" and other wonderfully dismissive adjectives. i knew from my reading, that it was a precursor and often accompanied by cancer. i hadn't read enough, or often enough to know what questions to ask. i knew enough to panic and asked some questions that seemed relavent; some were, some weren't. what i knew at the time: i had barrett's and it was considered "long segment", at 7cm. it was of considerable concern and i should get used to the scopes. was he doubled my already heavy dosage of aciphex, and we moved my followup appointment up by a couple weeks and agreed to talk about it then. he kept leaving the option open to "be more aggressive about remediating the situation, though surgery", but i don't honestly think i heard him until after i was off the phone. i spent the night freaking out, with my girlfriend, trying to comprehend what i'd heard.

i had a two day management offsite, in santa cruz, that managed to distract me pretty well. i got kinda panicky on friday night, flew to see my mom in idaho on saturday, and returned to work on wednesday. i spent the weekend reading research and all kinds of very chilling stats like "survival rates at 5 years for patients with intestinal metaplasia" and "morbidity rates in high volume photodynamic therapy for long segment barrett's patients with low grade dysplasia". this all left me with hundreds of questions that i didn't know enough to ask my gi, on the phone. monday, i spent 10 minutes or so on the phone with my doc's nurse. she calmly and very patiently (i know how busy this woman is, from watching her) answered my questions and explained a few details to me. armed with more information, i thanked her, dropped off the phone and resolved to relax a bit .

i have my followup appointment on tuesday. i have 50 or so questions for my doctor, laid out in three or four mental dichotomous trees that i'll use to determine what my likely course of action is. i don't anticipate actually making it through the full list of questions, but i feel better knowing that i'm as informed as i can be. i should come out of this next appointment with a date for the repair of my hiatal hernia and a "nissen fundiplication" (another wonderful word!) and a better idea about how i'm going to treat the barrett's.

i'm currently leaning toward a procedure that's licensed by a company with the same name: barrx. any proactive treatment of barrett's, without the presence of carcinoma appears to be centered around destruction of the barrett's cells and years of "surveillence" (read, "more scopes"). barrx uses high intensity rf emitted from a small catheter to destroy the barrett's cells. there are probably 10's of methods to ablate the tissue, most sound much less nasty than i'm sure they are; they're all pretty ways of saying "burn it out." barrx is really no different, just that the degree of control afforded by rf (over laser, electric, heat, high-intensity uv, or scalpel) appears to be much greater. we'll see.

i'm writing this, mostly so i can get it all out of my head. i hope that others who find this through search engines, later, won't hesitate to drop me mail and ask questions about my experiences. i'll endeavor to keep this updated, as my situation progresses. i also have a huge pile of more fun experiences to share, but hadn't had time to. i took a trip to greece and turkey, devised and attended a vodka tasting party (including activated carbon filtering of really really really cheap rotgut vodka), got hooked on robotics, and found alot of really good music. maybe i can bring myself to blog about some of those, too.

had my followup appointment with my gi, today. he reviewed my biopsy results, in person, and discussed "next steps" with me.

i'm paraphrasing, as the conversation was pretty fast paced and he afforded me almost 40 minutes for questions, but this is the gist of the conversation.

he was advocating a "watchful waiting" stance, at the beginning of the appointment. he wanted me to have scopes every few months, just to see gauge my response to the medication. based on the results of that, he "might suggest" surgery to repair my hernia and the fundiplication. in short, i commented that my medication mostly kept my symptoms in check, but that (ironically, like tonight) i still have reflux that keeps me awake some nights and that he'd previously been bullish on surgical intervention. he didn't disagree and gave me an in-house referral to "general surgery" and called out two names of women who have experience with laproscopic gastroesophageal work. he also mentioned that my insurance would probably also cover a consultation with another surgeon and that i could pick between the two, based on my initial consultations with the two surgeons. he gave me names of two surgeons at stanford that i might follow up with.

this first portion of the conversation was frustrating to me. i felt like he'd calmed on the outlook, over time and would have given different advice, if he'd just completed the scope. i think these feelings stem from his initial tone, when delivering the results, by phone. he'd sounded so suprised by the results and so sure that surgery was immediately appropriate.

i also had this disturbing feeling that the two surgeons from stanford (and the other extneral referals he gave me, through the course of the conversation) were college drinking buddies. my doctor is young, and while his bedside manner is really good, he's still really young. note that i don't hold this against him, having usually been one of the youngest people in my peer group, in professional environments.

regardless of decision to precede with surgical intervention, he explained that he still would like to check that the inflammation and ulceration he'd observed above my barrett's had subsided. this would also give an additional opportunity for biopsies and pathology reports, potentially confirming the diagnosis of and grading of dysplasia.

i talked to my doctor, at length about ablation of my 7cm segment of barrett's esophagus. in the end, he advocated the "watchful waiting" approach, but agreed that, at age 32, my case was atypical and may warrant an atypical approach. he stated that he diagnoses between one and two cases of barrett's, every two weeks and had never seen a patient younger than 45 with barrett's. we discussed ablation technique, in general terms and pdt in specifics. he said that ablation is typically reserved for high-grade displasia or high-grade with presence of stage 0+ cancer.

i asked about pdt (photodynamic therapy), emr (esophageal mucosal resection), and barrx.

my doctor stated that he'd routinely administered photodynamic therapy (pdt) in his medical fellowship and steered me clear of it. the exact phrase he used was "turns your esophagus into hamburger". we used this time to discuss potential complications of ablation. these weren't new to me and fall into two categories: scarring and perforation (taking too much tissue).

he said that emr was definately something he'd consider to be higher risk and also difficult to find a qualified surgeon.

he was not aware barrx, but knew of a local surgeon who has some experience with newer ablation technique. with me sitting in the office, he emailed this surgeon and agreed to call me upon reply. i was hesitant to use a phrase like, "can you add me to that thread?" outside a work context. my doctor seemed confused when i mentioned (barrx) rf, relative to ablation and mentioned "cryo" as what he thought of as a "newer procedure". i was a little thrown, as i'd not uncovered anything about freezing. turns out that cryo spray ablation is a device and technique licensed by "csa medical". it's not yet fda approved for general use, but is in widespread surgical trials. why is it that all the good information about these procedures is always under the "for physicians" links? there are some good articles by dr. johnston (of the cleveland medical clinic), in that section. i also found a reasonably comprehensive overview of treatment options for barrett's that refers to cryo spray.

my doctor highlighted something that i hadn't previously considered. getting the nissen fundiplication might preclude some of the newer ablation procedures and if i'm going to persue that, i should look into it. the newer techiniques and devices tend to be in use in very tightly controlled trials or fda approved for very specific circumstances (general statement, not just for barrett's ablation).

so, i have a scheduled date for my next scope and a date to talk to a surgeon at palo alto medical (consultation only). i've got external referals to some local surgeons. i've got alot of leg work to do over the coming weeks.

thompson cancer survival center has a department (yes, really) called the "center of excellence for treatment of barrett's esophagus" that appears to be well regarded, in the medical community.  it's located in knoxville, tn, of all places.

in doing some research, it seems that dr. overholt helped develop the barrx procedure and was one of the first licensees, post fda approval.  he has an almost cult following on the johns hopkins barrett's discussion board.  taking all the overblown statements about how he walks on water, he does appear to head up a team of very high volume barrett's specialists.

i contacted dr. overholt's project director at the thompson cancer survival center.  she was really helpful and very knowledgeable.  i sent a copy of my pathology report and endoscopy report to her and she agreed to have dr. overholt review it, early next month.  she also said that i should pursue the barrx before the fundiplication.  she mentioned that the fundiplication can pinch the tissue at the bottom of the esophagus and obscure barrett's / cancer cells that reappear, following the ablation.

it looks like i may be taking a trip back to the east coast.  maybe i'll get out to graceland, as part of the trip.

here's the fda approval (originally licensed under the name "stellartech"), including the new "halo 90":

http://www.fda.gov/cdrh/pdf6/K060169.pdf (halo90)
http://www.fda.gov/cdrh/pdf5/K051168.pdf (halo360)
http://www.fda.gov/cdrh/pdf4/k041383.pdf (stellartech)

i've been in idaho falls with the kids for the week.  nicole's in new york with one of her friends from college, who is in the process of moving there, so i'm alone with the kids.  this week has been amazing.  i haven't had this much time alone with the kids in over a year and i've really enjoyed the time.

quick aside: my kids are the best.  they're smart, funny, strong, caring, cute, and resourceful.

before this week, i set a goal to get eva, my 2 year old, totally potty trained by the end of the week.  nicole suggested it a couple weeks ago, after i was already determined to do so.  she's said she'd tried, but with the time shortage from school, hadn't been able to make it work.

to put it succinctly, mission complete.  two days since an accident and she's continuing to get more confident.