Friday, April 3, 2009

Medical Frustrations

It's been a week of frustrations, trying to get a doctor to determine whether or not I have mastoiditis as suggested on my MRI report last week.

On Monday morning, I watched the clock and called the ENT I've seen in the past at 8:02 a.m. to try to get an appointment asap. First I was told he couldn't possibly fit me in until late May. I immediately started trying to explain that mastoiditis is potentially very serious and I couldn't possibly wait that long. So I was told that they could squeeze me in on April 10 because there had been a cancelation.

So I called my internist's advice nurse. (My internist was out this week because her son had surgery.) I asked whether it was OK to wait that long if there was a possibility had mastoiditis, which can potentially (in rare cases) be fatal. She told me to call the ENT's receptionist again and tell them to ask the ENT if it was OK to wait until April 10.

Meanwhile, I called my immunologist because I figure he treats kids as well as adults and sees a lot of ear infections because kids with allergies and asthma seem to be prone to them. I leave a message asking for a call back and a recommendation for an ENT.

When I haven't heard from him by a few minutes before 5 p.m., I decided to see if I could make an appointment since I still have a wheeze from the infection I had a few weeks ago. They fit me in the next day.

So Tuesday I see the immunologist. He doesn't like the sound of my wheeze and wants to put me on Prednisone to try to clear it up. But then we talk about the possible mastoiditis, and after he takes a minute to look it up, he tells me I need to see an ENT asap and that he's not comfortable suppressing my immune system if there's a chance I have a serious infection like that. He wants me to go through my primary care doc (no doctor wants to step on another's toes) but reluctantly gives me several names of ENTs he works with and likes. I call my ENT's office again and repeat what the immunologist said about needing to be seen asap and asking if someone can ask Dr. E directly if it's OK for me to wait. They promise to have him call me back.

Meanwhile, I get a chest x-ray to rule out pneumonia or whatever.

I don't hear from Dr. E that afternoon. In fact, I don't get a call until late the next afternoon (Wednesday), and then it's not from Dr. E. It's not even from his medical assistant. It's from the receptionist, who got instructions from the MA, who got a note from Dr. E saying he doesn't think I have mastoiditis and doesn't think he needs to see me at all. And they cancel my April 10 appointment.

I am not happy about that. And I clearly remember my internist telling me last week that I needed to follow up with Dr. E about my sinuses if nothing else. Whatever.

I go to acupuncture, since the call from the ENT's receptionist comes just minutes before I need to leave. I brought the disk with my MRI on it and the radiologist's report to share with her, and we have fun looking at the MRI on her computer. Her monitor is bigger than my laptop's and clearly has higher definition because we find the two punctate foci on the right frontal lobe mentioned on the report. Of course, we also find two others near each other but in a different position on the left frontal lobe. Or at least we think we do.

At the end of my session, she asks if my mastoid process is sensitive and presses on it. I practically levitate off the table. Yes, very sensitive. She urges me to please call and make an appointment with one of the ENTs the immunologist told me about.

I call the one the immunologist particularly liked and they can't fit me in until April 9, which is actually pretty quick considering I'm a new patient, but they put me on the cancelation list.

On Thursday morning, I wake up to a phone call from Dr. K's office. The receptionist I'd spoken to the previous day had spoken to Dr. K and he wanted me to see a different doctor, who specializes just in ears. He also had his receptionist call the other doctor's office and get me worked in on Dr. W's schedule right away, which was an appointment this morning. Dr. K's receptionist said that if I really wanted to see him, I could keep my April 9 appointment, but that they would probably have to refer me to Dr. W anyway.

I'm thrilled that I don't have to wait yet another week to find out if I have mastoiditis.

I get to Dr. W's office a little early to do paperwork. I'm surprised when they take me for a hearing test, but I'm fine with that. I finally see Dr. W, who is a very nice but not chatty man in his 70s, I'm guessing. He looks in my ears and says they look fine, which I knew. So he tells me I can't have mastoiditis because I'm an adult and I don't currently have an ear infection. (I had a double ear infection in mid February, treated with antibiotics, which was the start of my ear problems.)

He prescribes a microdose of Xanax for my vertigo. Doesn't address my ear pain at all. Says the tenderness of my mastoid is irrelevant (which isn't what I've read on the Internet, but a lot of doctors don't like hearing that and he dismissed my questions). He confirmed I have increased hearing loss from my last tests, particularly in my left ear. He wants to monitor that annually, and tells me to come back in three months if I still have vertigo.

So frustrating.

And I spent the week waiting for other doctors to call back as well. My OB, who was supposed to call me several weeks ago to discuss the results of my sonohysterogram is MIA. I called her last week to discuss it and was told she was on vacation. Her assistant promised she'd call me back this week, but no such luck.

After two phone calls to my new hemotologist this week seeking the results of my blood work from March 17, I finally heard back from him late today. Most of the stuff was what he expected. He's unhappy that my ferritin levels are only 26 despite my supplements -- 50 or higher is normal -- so he's going to order some IV iron for me. I'll get infusions over five days, and they don't have to be consecutive days. He says that while it probably won't cure my fatigue issues, that most people feel a lot better and are less tired when their ferritin levels are at least 50.

The hemotologist also was unhappy that my Vitamin D level was just 16, again about half of what it should be despite prescribed megadoses of supplements.

He said he wasn't sure what to do about that, but he has a colleague at OHSU, an endocrinologist, who specializes in Vitamin D issues. Who knew that could be a specialty? Anyway, he said he would email his friend today and let me know what he hears back.

He's still waiting for a test result to see whether my monoclonal gammopathy has harmed my nervous system, something I hadn't even realized was possible. He said he would call the lab in Utah and see if he could hurry them up a little.


Herrad said...


What a dreadful week hope you can relax abit this weekend.

Take care.

Joan said...

who's the guy who specializes in Vitamin D? We want to propose research on the topic for folks with ID.


Aviva said...

Herrad: Thanks! The weekend was much better, if only because spring finally arrived in Portland and the sun was out for two full days. :)

Joan: I don't have his name. The hematologist didn't name him. But I'll ask when I hear back from him/them. And ok, I don't know what ID stands for? But either way, I'll get you a name next time I talk to my doc.