What we learned in Kansas City (from the handsome doctor)

Jeff and I went to Kansas City on Wednesday, to consult with an interventional radiology specialist about my condition. The neurologist I’ve been seeing here in Topeka referred me to KC to review my case, and my various X-rays, to determine whether more films need to be taken (and if so, when), and what other steps might be necessary.

Apparently I never spelled out, here on the blog, what’s actually causing my Horner syndrome. I had my additional MRI and CT scans on October 20, and met with the neurologist on October 21. The CT angiogram of my neck showed a dissection in my left internal carotid artery. The explanation in Wikipedia is the clearest I’ve seen:
http://en.wikipedia.org/wiki/Carotid_artery_dissection

Carotid artery dissection is a separation of the layers of the artery wall supplying oxygen-bearing blood to the head and brain, and is the most common cause of stroke in young adults. (While generic dissection can imply any kind of tear, cut or other breach in a tissue, in this context of vascular medicine, dissection is a blister-like de-lamination between the outer and inner walls of a vessel, generally originating with a partial leak in the inner lining.)

I started taking Coumadin that same evening – an anti-coagulant to thin my blood, to reduce the chance of clots forming along that artery and moving up into my brain, and help prevent me from having a stroke or other less severe, but still serious, vascular problems.

Looking at my films on the disk we brought, Dr. Martin (the interventional radiology neurologist specialist) agreed with the course of treatment my neurologist had begun: continue on Coumadin, and repeat the CT angiogram about six to eight weeks after the first one, to make sure the dissection hasn’t gotten any worse. As long as that result is good, we’ll carry on with the Coumadin, and go back to KC in five to six months so Dr. Martin can do an angiogram to make sure the dissection has healed. If it has, I can stop taking the Coumadin, but will then switch to aspirin, and probably need to take that daily for the rest of my life. If the dissection is worse, we’d do the angiogram sooner, and decide if a stent would be appropriate.

Other things Jeff and I learned from Dr. Martin:

• We can’t just look at my left eye to see if the dissection is healed, because there’s a good chance my left eye and eyelid might never “go back to normal.”

• I probably have fibromuscular dysplasia, or FMD, which Dr. Martin said “sounds worse than it really is.” I think the angiogram will confirm whether or not I have it. He said FMD is quite common, and it’s usually discovered incidentally when they’re checking something else.

• How did my dissection happen? Although Wikipedia uses the terms “spontaneous” and “traumatic,” leading me to think my case was “spontaneous,” Dr. Martin said it probably happened the week before my Horner syndrome symptoms appeared, when I had stomach flu. I spent all of that Saturday, September 18, throwing up. I barely touched anything all day, not even sips of liquid until pretty late in the afternoon, but still I was heaving, off and on, for close to 12 hours. The next day, my upper chest was sore. The force of the vomiting likely caused the dissection – and perhaps I was “predisposed” to that injury because of the (probable) FMD. Anyway, it wasn’t really a trauma, but probably falls into the “traumatic” category.

• But wait … the stomach flu was a full week before the Horner’s symptoms; how can that have caused the dissection? We already knew that Horner syndrome is pretty rare, and yet it can be caused by a wide variety of conditions. A dissection in the carotid artery, whatever the cause, is more common, but rarely results in Horner syndrome. So, the dissection could certainly have occurred on September 18, with the Horner’s symptoms appearing a week later.

• Speaking of my left eye, when Dr. Martin began his examination, shining the light into one eye, then the other, he said something like, “It’s too bad we don’t have any med students here today; they could see a great example of Horner syndrome.” Even though I’ve known for weeks that’s what it is, it’s still really cool to hear a specialist say, “Yes, that’s what you have.” And, he told me he HAS had Horner’s patients in the past, which gave me an even greater sense of security. I haven’t always been impressed by my neurologist in Topeka, but I think he referred me to a good department, where they see this condition a lot and know what to do.

• If the affected artery were to end up completely blocked, it’s still possible I could function normally and continue in decent health. Dr. Martin said there are four channels, and if one no longer worked, sometimes the amount of blood circulating through the other three is enough to keep the brain healthy.

• I can continue most of my everyday activities, and do moderate exercise, without much concern. He said I should “avoid heavy lifting that puts a strain on” my neck, and avoid exercise and sports that could do the same. He gave ballet as an example – but we all know I wasn’t doing that anyway. 😉 But I should be able to get back on the treadmill anytime for some long walks, with no problems.

• Things that could signal a worsening of my condition: if I suddenly can’t see colors, or have blind spots – and these things would only happen with my left eye. If the problem isn’t with the artery or nerves, but in my brain, it would affect the left side of my brain, and therefore the right side of my body.

• Did I mention Dr. Martin is really nice-looking? He’s soooo cute, actually reminded me of the “love-of-my-life” guy I met and dated when I was 20 and he was 19. I got this picture of the good doctor from the hospital website, but he looks better in real life – and his hair is a bit longer and thicker now than in the photo. Yes, he’s very easy on my asymmetrical eyes!

I’m sure there are other things I’m not recalling now – three days later – but I think I hit all the main points. I’ll post more about the injury and its treatment as things progress and I learn more, and any more developments or changes in my condition. But overall, the consultation eased my mind, and made me feel less worried about the outcome. And I feel really lucky that I developed Horner syndrome, so we could be proactive and work to prevent a stroke or other vascular illness or injury. I got a warning sign, where so many people don’t, and I had a couple of doctors who were determined to help me get to the bottom of it. Some Higher Power must be looking out for me, again. * waving * Thanks a lot, up there!