Sunday, November 14, 2010

Super-short update on books & reading

Over Saturday and Sunday, I managed to do some amount of cleaning in every room of our house. I was listening to the audio version of The Help by Kathryn Stockett, and it was fabulous. While dusting bookshelves, I started pulling out books to remove from my collection -- but not too many of them, I admit. I finished the audiobook today, and also read the last ten pages this morning of the novel Fury by Salman Rushdie. (I enjoyed it, but didn't love it, so I already have it in my small "to be weeded" pile.) So for several hours today, I've been "between books," and am not sure what to pick up next.

Finishing those two books, dusting the shelves and weeding some items from my collection, I began reflecting on my "Read 20 Pages Project" (R20PP). I haven't done as much "sampling" as I'd planned to do when I came up with that project idea. Today, I started thinking, I'd like to take a day off from work and spend the whole thing by myself, reading a chapter or a handful of pages from lots of my TBR books, to get a feel for them, and decide if I really need to keep them, if I think I'd actually enjoy them enough to keep them on the shelves and spend more time with them in the not-too-distant future. Since 2008, I've been keeping lists on LibraryThing of how many books I read each calendar year. Now I'm thinking, I shouldn't focus on finishing so many, and should sample more of them. Perhaps that will be a plan for the new year, which will be coming sooner than we expect: instead of trying to read 40 or 50 books, maybe I'll make a resolution to "sample" or "examine" 75 or 100.

Just some bookish ideas floating through my head. Getting late, gotta get ready for bed.

Thursday, November 11, 2010

This is your life. And THIS is your life on Coumadin.

For about three weeks, I've been taking the drug warfarin (approximate pronunciation WORF-uh-rin), the generic version of Coumadin. Coumadin is an anticoagulant, meaning it thins your blood to relieve blood clots in the body, and/or to prevent them from forming. It's a powerful medicine, salvation for some people, but dangerous and potentially deadly as well. I'm taking it to reduce the chance of developing emboli in my carotid artery, or a blood clot in my brain, due to my carotid artery dissection. For me, Coumadin is reducing the likelihood of my having a stroke or other problems caused by the dissection. I'm very glad that Coumadin (warfarin) exists, and I'm grateful to be taking it, but man, it sure requires some adjustments in everyday activities.

The picture above, of my arms, illustrates two important things to know about Coumadin. First, you will bruise easily. Second, you'll need to get blood drawn regularly to monitor your Protime/INR level, which indicates how fast your blood clots. I had mine drawn twice a week for the first two weeks, and started a once-per-week schedule today. I've been on 2.5 mg per day for about ten days, and am hoping the results of today's lab will be in the right range and not require a change of dose. Getting labs drawn regularly (more often in the first days), and adjusting the dosage, also means playing phone tag with your doctor's office, to find out what dose you need to take that night or the next day. Again, settling into a "routine" of having lab work weekly or bi-weekly, should greatly lessen the amount of phone tag you'll need to play.

Let's briefly review number one, "you will bruise easily." When taking an anticoagulant, you need to be more careful of yourself. I've been avoiding the main area of the basketball court, before and after Kyle and Ryan's games, trying to stay along the edges of the court, and watching for any loose balls coming my way. I'm trying to be more careful in the tight spaces around the house, to avoid bumping into furniture. Basically, I'm paying more attention to what I do, and the area I occupy, physically, at any given time, to avoid risky situations or unsafe movements as best I can.

The handout I got with my prescription is full of precautions. For instance, I have to avoid eating "large amounts of leafy green vegetables," and other foods that contain a lot of Vitamin K, because "too much Vitamin K can lower the effect of warfarin." This is the first situation in my life where being a "vegephobic" is a good thing for me! Seriously, it doesn't say to avoid these things, but not to go overboard on things like lettuce, cabbage, or spinach. But, it DOES say, in bold type, to "avoid drinking cranberry juice or eating cranberry products." No explanation, just avoid them!

I knew already that people taking Coumadin shouldn't take aspirin, but I didn't realize that ibuprofen could also interact with it. I'm now taking extra strength acetaminophen for my headaches, and took the ibuprofen out of my purse. Of course, I have to be extra-careful to try not to cut myself, and be ready to get a bandage and apply a lot of pressure to the cut if I do. Several people have already mentioned that, surrounded by books and paper, I need to watch out for paper cuts. I can't tell if they're kidding. I seriously doubt that a paper cut could do me in, but as I said, I know where to get a bandage in a hurry.

Finally, my absolute biggest problem with taking this medicine, and I don't care if this is "too much information," is how it's affecting my menstrual period. It's no surprise that a blood thinner would have some impact on my period. I was already having a couple of really heavy days each month, and I've also had some between-period spotting, off and on for over two years now. Sure enough, days two and three of my period, last Friday and Saturday, were extra-heavy, and that was normal. Days four and five weren't bad, somewhat lighter. Before Coumadin, my period was usually five days, occasionally six, but the last two days were always lighter. With Coumadin, day six was heavier than day five, and day seven was some of the heaviest bleeding I can ever recall having. Today is day eight, and not as bad as yesterday, but no picnic, I can tell you that. I still felt globs of blood coming out of me, multiple times today -- TODAY, on DAY EIGHT, for crying out loud!

I called my doctor -- my regular doctor -- to touch base with her about it today, and when the nurse called me back, she assured me it's to be expected. I told her if I'm still bleeding sometime next week, they'll be hearing from me again, and she said I could call Monday if I still have it. Monday -- that will be day twelve. I bought a 44-pack of "Super - Long" Always pads yesterday (did I mention I'm using larger pads exclusively now? I don't trust the regular size to handle the flood), and it says right on the package, "3-month supply!" and I thought, "Let's see how fast I can blow through these!" I'd already almost used up the two 16-packs I got last week. So I feel gross, but also very annoyed, because really, what constitutes "heavier than normal" bleeding or a "prolonged" menstrual period? I was hoping that a couple of super-heavy days might mean a SHORTER period, and instead I have to hold out till Day Twelve, and then ... I don't know, find out if I've become anemic? See how much money I've spent on maxi pads by then? Have someone tell me I should have called the doctor sooner? Or, as long as I'm still functioning -- not fainting, sleeping, confused, or soaking through my clothes -- maybe they'll check my hematocrit, verify it's all right, and say, "Just hang in there!"

So, I guess my point is, if your doctor feels that you really need to take an anticoagulant, prepare to make a few changes in your lifestyle or everyday activities, perhaps small changes in the foods you eat if you love cranberries or green leafy vegetables, and know the dangers of taking Coumadin, but that your doctor feels the benefits outweigh the risks in your situation. And if you're a woman of childbearing age who still has menstrual periods, stock up on those feminine supplies, because honey, you're gonna need them.

Saturday, November 6, 2010

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:

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!

Monday, November 1, 2010

A video & picture of me, & more info about Horner Syndrome

Jeff recorded this video of me about a week ago. It's my introduction to the uncommon condition called Horner Syndrome.

I didn't say anything in my video about the third symptom that's usually mentioned, an absence of sweating on some areas of the affected side of the face, because unless it's deep summer or you're exercising a lot, you're not likely to notice it.

Because you can't really see my different-sized pupils in the video, here's another cropped photo of me, with my glasses on, that really shows the difference:

There are a handful of sites where I found helpful and interesting information when I started researching my symptoms, and then Horner Syndrome specifically. The main page for Horner Syndrome on the Mayo Clinic site is a very good place to start:

If you click from that first page over to "Causes," you'll see a few of the biggies (stroke, tumor, cluster or migraine headaches), but also this straightforward explanation of what the "sympathetic nerves" are, and why only one side of the face is affected:
Sympathetic nerves in your face don't pass directly from your brain to your face. Instead, they start in an area of your brain known as the hypothalamus, travel through the brainstem and then down your spinal cord to enter your chest. From your chest, they go back up your neck, next to the main arteries that deliver blood to your head (carotid arteries), into your skull and then to your eyes. If the nerves are injured at any point along this route, Horner syndrome can result. Signs and symptoms of Horner syndrome usually occur on only one the side of your face because separate sympathetic nerves control each side.

A good article from eMedicine with fairly technical/medical terms, but includes some historical information, and more details about physical characteristics and the wide range of causes -- including mine, carotid artery dissection:

A "Can you identify this condition?" piece from a Canadian medical journal:
(Note that the link on the "Answer" page goes to a different "Question," where you'll see a picture of "hairy tongue," which I am so glad I don't have! Blech!!)
(Citation: Johnson, Davin; and Sanjay Sharma. "Ophthaproblem: Can you identify this condition?" Canadian Family Medicine, Vol. 56, No. 5, May 2010, p.439ff)

This is the abstract for an article with the specified objective, "To demonstrate the importance of thorough investigation of patients with Horner syndrome, and to explain the relevant anatomy." It's a recent case study, as the article was just published this year.
(Full citation: Costello, D.; J. Salmon; C. Milford; P. Pretorius. "A rare cause of Horner Syndrome." The Journal of Laryngology & Otology (2010), 124: 925-927; Cambridge University Press)

A "pictorial essay" from a medical journal, with complicated medical terms and photos from radiology films. For the diehard medical buffs.
(Citation: Nagy, Aurangzeb N., et al. "Horner's Syndrome due to first-order neuron lesions of the oculosympathetic pathway." American Journal of Roentgenology, v. 169, no. 2, p. 581-584, 1997.)

The Genetic and Rare Diseases (GARD) Information Center, on the National Institutes of Health (NIH) website, has little info about Horner's, but links to a variety of other resources that might be helpful. I found the solid eMedicine link through this page, so it's worth a few minutes of poking around.
(Note that they use "Horner" on the page, but "Horner's" in the title and the url.)

The National Organization for Rare Disorders (NORD) has a short description of the syndrome, links to other entities that may also be helpful, and the option to purchase a full-text report for the not-too-bad price of $7.95. In spite of the limited info there, I'm including the link because I love this sentence:

The underlying causes can vary enormously, from a snake or insect bite to a neck trauma made by a blunt instrument.

That's right, almost anything might cause Horner's, so good luck figuring it out! ;-)

That's what I've got for now. I also found a handful of books through Google Books searches that helped me out, and a couple of informative YouTube videos as well. But, I'll try to share the best of those resources in subsequent posts. I'll also post more about the cause of MY case of Horner Syndrome, internal carotid artery dissection, as I learn more about it. I'm going to see a specialist at a Kansas City hospital in two days. So, more to follow, as I'm able to write and post it.