Monday 14 May 2007

tired of waiting for you....

I had my last set of MRI scans on 3rd April. The way the private healthcare system works over here (it’s a long story, but basically my health cover is -- more or less -- paid for by my work) is that I report to the hospital for my scans, but then I am forced to wait whilst they send my scans on to my consultant neurologist. My neurologist then looks at the scans and lets me know what’s going on and what he plans to do about it.

I’ve recently changed neurologists and so I had no real idea how long this process would take. I was keen to know what was going on, of course, but I also knew that I was just going to have to be patient. It’s hard knowing that the guys operating the scanner have been looking at the inside of my head and drawing their own initial conclusions as I lay there, knowing that I was possibly some weeks from hearing for myself what was going on in Brian. The last time I had some MRI scans done, in August 2005, it took a little over a week before my consultant gave me a ring to let me know what he was thinking. That week’s wait was especially difficult as the whole thing was new to me, and I didn’t yet have any real idea what was wrong with me.

It was a worrying time.

In some ways, I don’t feel as though I’m much better off now. I know that I have Transverse Myelitis, and I know that I have one big lesion on my cervical spinal cord that was caused a loss of power and nerve sensation throughout my body, and a couple of indistinct markers in my brian that might or might not be lesions. What I don’t know is if this situation has changed in the last 20 months, or if I have developed any new lesions and if this would affect both my diagnosis and my prognosis. Another lesion (or sclerosis) would by definition mean that I would have Multiple Sclerosis.

You can see why I wanted to know if anything had changed.

On 24th April, three weeks after the scans were done, my health insurance company wrote to me confirming that they had paid the £900 charge from the hospital for that scan on 24th April. Still no word from my neurologist. I chased his office. Yes, he had been away over Easter but he would look at them very soon and get back to me. Another week went by with nothing. I chased again. Oh, apparently my neurologist was now on a conference in Boston and because he’s a professor at a teaching hospital, he was involved in the whole conference and not just a couple of sessions. Apparently he would need to be there for the full ten days. I wasn’t very happy, but what could I do? He was apparently back on Tuesday last week and his secretary assured me that my scans were on the top of his desk. When I had nothing in the post this morning, I chased again. Apparently my letter was posted to me this morning. There have been no changes and he doesn’t need to see me.

And that’s it.

Is it just me, or should I be expecting more than this? Now, don’t get me wrong. Whilst it might be slightly frustrating news, it’s also probably the best news that I could have got. I have not got any worse. My condition has not “developed”. That’s great. What has annoyed me is quite how long it has taken for him to get round to telling me this. I understand that he is one of the leading experts in neurology in the country. I understand that he heads up a well-renowned research department. I get that he is a teaching professor. He’s busy. I get that.

At what point did he forget that I’m the patient here? That I might have needs and worries? That I might be looking to him to help me understand what has been happening to my body? As my doctor I think we have a contract of trust, and I think he has an obligation to me. Actually, bollocks to all that: he took me on as a private patient. He’s been charging me for his bloody time. I think that means he is doubly obligated to me.

*deep breath*

Still. I know now, eh? Except I still don't know really, and I’m still playing the waiting game.


In other news, I’m off to the fracture clinic to have my broken ring finger examined on Wednesday. The good news is that we picked up the rings on Saturday, and mine fits on my right hand. No need for the Frodo Baggins chain then…

I’m almost disappointed by that. I feel as though some comic possibilities have been lost.


  1. Glad to hear you are no worse.

    I can totally relate to the doctor situation, its the exact same here in the states. Go in to docs office one week, get test, a month later the doctor says nothing is wrong there (and in my case involved the doc not even giving me a next option, as I was doubled over in pain the entire time).

    You'd think doctors, having degrees and being intelligent and educated and all, would be able to prioritize a bit better and answer patients concerns as soon as possible.

  2. I can understand your frustration, but equally I'm pleased to hear that there's no deterioration. Rather no face-to-face with the consultant than 15 minutes in his presence to hear bad news, surely?

    And the BBC thing is definitely exciting!

  3. Glad to hear the situation hasn't worsened - you must be relieved, even if you did have to endure the agony of that long wait to find out the good news.

  4. Sooooooooooooooooooo glad to hear that it seems to be the best possible news. Given the lengthy wait, you certainly deserved the best. :)

    I had a similar experience this past summer. In fact, I had to call to get my results because we were approaching the date we had schedule my surgery...which, based on the results, I ended up not needing. Had I not continued to pester them for the results, I would have gotten hit with a fee for not cancelling the surgery in a timely manner. Apparently, healthcare moves at the same pace everywhere...

  5. I'm really pleased there's been no deterioration.

    Is that really the service your insurance is paying for though? 6 weeks of waiting? That's terrible, it's not that reviewing some scans is as time consuming as surgery is it?

    If that is the kind of service you get off someone who's the head of a teaching department I think I'd rather have the understudy.

  6. My doctor sent me off to see a cardiologist who sent me off to have a stress test. I then made a follow-up appointment for a month later to learn the results and the cardiologist had not sent them to the referring doctor. Hmmph.