Shannon (sunk) wrote in bad_service,
Shannon
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bad_service

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I have an idea where to jam that eight ball, too.

Inspired by this post from earlier this month, I thought I'd share my own tale of medical bad_service.

Likewise, I'll include a wee warning: if you're adverse to descriptions of tumours and/or sinus/nose surgeries, this might not be the post for you.

In 2001, I noticed a little, well, "thing" in the back of my left nostril. It was hard, but pliable. "It's just dried snot," my parents and family said. "It'll come out eventually." One year later, the "thing" had grown, and I could easily feel it if I put my finger into that nostril. I managed to chip off a small segment of it. It bled like mad and looked like some sort of brain matter. I was, understandably, Freaked Out. Off to my general physician. She took a gander, said "Hmm..." and wrote down the name and number of a "fantastic" ear, nose, and throat physician (colloquially known simply as "an ENT").

In 2003, after putting off going (I had no idea it was anything serious, so it got put on the back-burner), I made an appointment to see this doctor, Dr Razman. Razman looked in the nostril and immediately told me that what I had was not snot, nor a booger, but an honest-to-goodness tumour. He ordered a biopsy and a CT scan. One CT scan, a painful biopsy, and nearly a week later (anyone who has ever had a biopsy knows that the wait between the test and the results make for the longest hours of one's life), I learned three things: the tumour was benign (non-cancerous), had set up residence extensively in my left maxillary sinus, and that it had a name: inverted papilloma.

Dr Razman told me that I needed surgery ASAP. I had two surgical options, he said. If I chose Door #1, he could do an endoscopic (partial) resection -- that is, removal of part of the tumour using an endoscope, a torture device designed by the devil flexible tube with a light and camera at one end and an eyepiece at the other. He would remove "as much as possible," but he would "never" be able to remove it all this way. If I went this route, the tumour would regrow to the point of being noticable/affecting my breathing again within 2-3 years, at which point I'd need surgery again. Basically, I'd need this surgery every 2-3 years for the rest of my life. On the other hand, if I choose Door #2, he could make an incision around my nose, peel it back/lift it up, remove "some bone," and possible be able to remove the entire tumour. "However," he said, "there's a 98% recurrence rate with inverted papillomas, so it'd be more extensive surgery, with disfigurment, and it'd still come back." And yes, you read that right -- there'd be "disfigurement." Thanks to the removal of bone, my nose would never "sit right" again, not to mention the scarring from the incision around the nose. "It's up to you," he said, "but I recommend the first option." Terrified, I asked him if the tumour could ever become malignant. "Theoretically, yes, but the risk of maligancy with IP is less than 1%."

I was 17 and terrified, and I trusted my doctor. And why wouldn't I trust him -- he treats (present tense) members of a local major sports team (not the Pistons, Lions, or Tigers, but the... yep, them.). That means he's a good doctor, right? ...Right? #2 would all be for naught, anyway, since it'd just grow back. I chose Door #1 and had outpatient surgery in 2003. When I went in for my one-month post-surgery follow-up visit, Razman told me he didn't need to see me again until it came back. "Just make an appointment when you feel it again."

In 2006, the tumour came back. Techically, it had never left -- it was impossible to remove entirely endoscopically, remember? -- but I didn't notice it until 2006, when it started growing into the nostril again. So back I went to Dr Razman, and had surgery again. This was my life, having the surgery every few years. Par for my course.

In 2008, I changed insurance carriers (well, actually, my father, who brought in $250K a year and is debt-free, decided paying an extra $100 a month to carry me on his insurance wasn't "in (his) budget," so I had to find insurance of my own, but that's parents_suck, not bad_service). Dr Razman didn't accept my new insurance, so I had to find a new ENT doctor. I had a sad. Dr Razman was awesome -- a rockstar ENT doctor -- and now I had to go to some subpar doctor. I put off finding a new ENT doctor for over two years. He'd said there was virtually no risk of malignany, and I'd gotten used to the tumour's quirks (couldn't sleep on my left side at all because doing so meant the tumour would slide over and block that nostril entirely, constant colds, horrible allergies, etc).

In 2010, I finally looked for a new ENT doctor, Dr Carson. Carson took one look in my nose and ordered both an MRI and CT scan (both with/without contrast -- twice the fun!), another biopsy, and said he was going to hand me off to a colleague of his, who had more experience with IP. Two weeks later, I'm in Dr Folson's office. Folson asks me, very directly, why I'd "let this go" so long. Didn't I know that there's a 10% risk of malignancy with inverted papilloma, which increases as long as it remains in the sinuses?

...Wait, what?

"Back up," said I (and yes, I said this -- I was too shocked to form proper sentences). "Dr Razman told me it was less than one percent." I told him what else Razman had told me -- that total removal was impossible without major, disguring surgery; that the recurrence rate was 98%; that surgery every 2-3 years was my only option.

"...That... that's not even in the same ballpark as the truth," said he. He went on to tell me that totall surgical removal was "absolutely" possible, and it could be done "entirely endoscopically." Further, judging from the images of my skull from the CT scan and MRI, he would "almost certainly" need to remove the inferior turbinate, but one can live quite well without it, and there'd be no hint of disfigurement ("no one but you and I would ever know it was gone," he said). As for the 98% recurrence rate, he had no idea where Razman had gotten that. "Actually," he said, "the recurrence rate is 10%... if it's removed entirely the first time. Unfortunately, since this is your third surgery, it's 50/50 at this point."

"...So, wait. Had I come to you in 2003, there'd be a 10% chance it'd ever come back. But because Razman only took out part of it twice, it's 50/50, and there's a 10% chance if it does come back, it can become cancerous?"
"Unfortunately, yes."

He also went on to tell me that had it been removed entirely in 2003, I might not actually need to have the turbinate totally removed -- it's possible that a "minor reduction" could have sufficed.

I'm not one to cry, let alone in front of other people, but to say I cried at that... would be an understatment.
One week later, after some pre-surgery bloodwork, I went back to schedule the surgery date. As he walked in, Dr Folson started by saying "Normally, I never speak ill of other doctors, but I ran into Dr Razman the day before yesterday. Well, actually, less of 'ran into' and more 'went and looked for.'" No surprise, that: Dr Folson performs surgeries at over a dozen hospitals in the area, including the only hospital Dr Razman does surgeries. Folson has known Razman for some time. "I told him I'm treating a former patient of his. He said he remembers you, but said he was absolutely positive that he got the entire tumour the first time. He says there was no second surgery, and that he removed the inferior turbinate during the surgery. He didn't really know what to say when I told him that I've seen records from the second surgery, and I can see the turbinate in the scans. I asked him if he was sure we were talking about the same patient, and he described you perfectly, so... I really don't what to say."

Thankfully, my story does have a (so far) happy ending: this past December 7th, I had the whole bloody thing removed. Folson said he "checked every space I could get to, from your sinuses to the base of your skull, looking for anything I missed." He said he got "great margins" (unfortunately, to be safe, he had to remove some healthy soft tissue around the tumour, lest any cells be left hiding out). He did have to remove that turbinate, and I lost/was given a hell of a lot of blood, but the bastard is gone. Of course, it can come back again, but given that Dr Folson's idea of follow-up is much better than Razman's ("it has the potential to become malignant, so I treat it as if it already is, as far as monitoring it goes"), if/when it does, he can likely remove it in-office, if it's caught early enough.

By the bye, I've since done some Googling and searching for info on Razman. To say that he has other bad reviews would be putting it mildly. It seems other people, with different conditions, have been told that the only way their condition can be dealt with is with constant treatment in the form of small, repetitive surgeries. At first, I wondered if Razman was simply incompetent, but now I wonder if it's not more lucrative for him to treat things this way. In the end, I take about 50% of the responsiblity in screwing myself over. Had I gotten a second opinion or did any research on my own -- just Googling "inverted papilloma sinuses" results in information regarding recurrence rates, risk of malignancy, and treatment options -- I might not have had to have bone sawed out of my head with the chance of having to have more removed in the future.

TL;DR: ENT Doctor, for whatever reason, blatently lies about treatment options, risk of malignancy, and recurrence rate of the tumour in my bleepin' head, putting me "behind the eight ball" (Folson's words) when having my third surgery to finally remove it entirely.
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