Suggestions for tomorrow's app't

Specific Illnesses & Conditions VM/MAV
1

So tomorrow, I’m going to see Kurt Hecox in Milwaukee. He’s a neurologist who’s considered one of the brightest minds in his field. He’s an out-of-the-box thinker and extremely bright.

I have a brother who, when he had epilepsy, went through probably 3 years of unhelpful doctor’s visits and unsuccessful medicine trials. Then we were referred to Hecox. He figured out the problem and the correct treatment where no one else had been able to. So our hope is that he will be able to do the same for me.

Basically, I need a way to come up with a ~2-minute summary of my problem. That’s hard on many levels, especially given that this is a very long, drawn-out situation, but with many varied and changing symptoms. And God only knows what it’s like trying to DESCRIBE my personal experience of dizziness. (It’s like trying to describe color to a blind person … sound to a deaf person.)

As I was reminded earlier this morning, he’s not going to be looking for a long, drawn-out explanation from me. The way his mind works, he’ll simply know (or, at least, decide as he goes) which questions to ask.

Now, I don’t know whether to mention MAV. Maybe he’s heard of it; maybe he hasn’t. I’ll probably either mention it at some point or just let him read about it when he looks through the medical records I’m bringing (he’ll probably peruse those at a later time, mull everything over, then get back to me).

So, bottom line, when you’re going to see a neurologist who’s an extremely bright thinker, in the hopes that he’ll “find” / understand / see (etc…) something that others have missed … how do I go about setting up a brief summary of my problem? I could write a novel if I wanted to. Condensing it into a two-minute initial summary is HARD.

Any suggestions? (What to include, what not to, for example?)

2

Alas, I think it’s a stretch to anticipate any horrifically busy doc will spend much research time on your file, never mind your condition. So I wouldn’t take the chance. I’d give him/her your (well thought out) description, the suggestions of the diagnosis and trust him to take it from there. Anyway, from my experience, (I have MAV) the doc will ask a bunch of questions before you can utter anything and will have an opinion before you give yours. Still, I’m not on solid ground here. Yours is a good question: I’m most interested in other answers.* Bon chance*

3

Despite the fact he’s pretty much world-renown in his field, he’s also been somewhat a family friend ever since my brother saw him years ago, and he (the doctor) does NOT give up easily.

Also, when we originally contacted his clinic, they said “We’re booked solid and the next available appointment is in November.” He wrote back to me later and said, “I’ll find a way to see you in the next few weeks.”

That says a lot about his character.

For my own sake, I hope to all hope he’s heard of MAV.

Anyway, basically I’m trying to make the visit as time-efficient as possible. He’s not the sort who will WANT, or even NEED, lots of info right off the bat. He’ll want a summary and then decide what to ask from there. Again, he’s a very bright person, and so it’s in the best interest of BOTH parties if I can easily summarize this bizarre experience.

… Boy, I feel like heck today. And the last few days. I always seem to feel (except when lying down – then it’s not so bad) like my whole body is “breathing,” like I’m floating an inch or two up and back down every two seconds.

4

Hi there,
I am a physician myself and also have had to present my case to many top docs in the field. My advice to you from both a personal and professional standpoint would be to organize yourself beforehand. I can tell you a bit about how a doctor writes their notes and it always begins with a chief complaint. Therefore, I would begin explaining to the doctor your current symptoms as best as you can explain them. Be as descriptive as possible. Although you are giving the doc all of your records, I would also go through the most important ones with him (ie, point them out one by one and make him look at them in front of you). You can explain the reason why you got the test at the time, how you were feeling, etc. And lastly, I would tell him the history of your condition in a concise manner, other docs you have seen and their opinions as well as all the treatments you have tried. I know this seems like a lot to say in a short amount of time, but if organized correctly and well thought out, it works very well. In our training as docs, we are expected to present the most difficult patients in this way and it can usually be done in just a few minutes. I hope this helps and I hope your appointment tomorrow brings you a step closer to feeling better.
Warmest,
Lisa

5

Hi George,

Sorry you feel so lousy my friend. Have you made any recovery since the Effexor?

I think you should give the doc the benefit of the doubt and assume he will follow the correct procedure –– and may systematically go through it all and identify unknowns etc if he doesn’t immediately think it’s just all MAV (differential diagnosis).

I would write up a one page sheet with bullet points perhaps divided into a section or two denoted by years or a few years at a time as a header. He can then either listen to you first, read the page first and then listen, or refer back to your list when he has more time to ponder the whole thing if he doesn’t peg it for MAV.

It sounds like he’ll be a good guy to see. Looking forward to hearing how it all goes for you.

Hang in there … Scott :slight_smile:

edit: looks like we both posted at the same time Lisa. Do you think the sheet with bullet points would be helpful? I did this once for a guy I saw a few years ago (who was terrible). He did read it though and then asked me questions never really letting me talk much. Old sod.

6

Hi George,
I’m so glad to hear you have found a Dr you feel you may be able to connect with.

1st , I would right a list of symptoms,
Starting with any visual abnormalities you experience if any?
I drew pictures and a list of symptoms, handed them to him, and waited for his response

Any pain that is involved, such as unexplained tenderness (like bruising) anywhere on your scalp, no matter how small.

As we’ve seen on this forum time and time again, Explaining our dizziness can be difficult, as we are all very different, he will need a good description, don’t forget to include any true vertigo event (spinning) if any……even if it’s only happened once for a few seconds) before the other symptom started.

If he hasn’t heard of MAV, then He surely he would have heard of migraine variant and or silent migraine causing vertigo.
.

Do you wake up with all these symptoms George?
Or do they progress through out the day?

Good luck with your appointment George.
Thinking of you Jen

7

George –– also wonder if you should take a print out of this along with you:

You could maybe say, “I came across this doc from a friend who experiences similar symptoms and wondered if you would have a read at some stage”. Of course, if he knows it all already, it might be pointless to hand this to him. Nor do you want to seem like your telling him what this is. Anyway, it’s all timing I guess and might be worth a go.

Scott

8

Hi again,
To answer your question about the bullet point sheet that is not a bad idea. However, I still would first present your case verbally. The doc will take his own notes. You can then give him your bullet point sheet at the end (but if these points are very important I would verbally tell the doc first). A good doc is a good listener, takes notes carefully, and asks questions to clarify. By you describing your symptoms, history, and medication trials, the doc will know the right questions to ask as he is organizing a differential diagnosis in his head.

I also would be surprised if a top neurologist, even if migraine is not his specialty, would not know about MAV, but bringing Dr. Hain’s materials is not a bad idea. That being said, if the doctor cannot give any other explanation as to your symptoms and has never heard of MAV, then maybe this should not be the doctor recommending treatment. Experience with actual MAV patients (the more the better) is usually your best bet if this is possible.

Keep us posted and good luck!
Lisa