And now for another exciting episode of, ‘As the Diagnoses Turns’ – or, ‘All My Maladies’. Yes, that’s right, I went to the doctor again today for another check-up. This time I went to my primary care doctor who’s a nice lady, so it wasn’t a visit to one of the Gap-Model Doctors. This time, I needed to find out what the radiologists saw in the MRI of my head that was done way back on July 31; to follow-up on the whole mental slowness, post-unconsciousness problems; and the slight difficulties I’ve had with my left foot feeling like I’m getting stabbed straight through every single time I take a step. As I know some of you have noticed from my no-toe pictures, my feet and ankles were rather obviously swollen. They’ve been like that ever since I passed out on July fifth. I figured maybe I had just banged my feet up too in the process of falling, which made sense considering I did have some rather mild bruising on my left foot. My right foot got better – now it only hurts occasionally in the ankle – but my left foot never really quit hurting. After about 6 years of constant foot pain from the bone infection, I got pretty good at just dealing with the fact that my foot hurt and forgetting about it. So I did. Until finally just before Nate got here the stabbing pain came back. Then – being stupid – I went walking around historic mansions and cute little old towns in Virginia with Nate one long and excruciating day. I haven’t been able to walk properly since. Not a good thing.

My Doctor wasn’t too happy about all of that, so she has ordered a bone scan just to make sure that the worst hasn’t happened – the infection stuck around and decided to attack the rest of my foot. I don’t think that’s happened, but I feel much better knowing that my Doc isn’t happy until she’s ruled out the worst.
So yay, I get to deal with a four-hour long bone scan again, and having to deal with the possibility that it might be infected again.

In my own humble opinion, I think the foot was having structural problems all on its own without any kind of infectious process going on. Back in April I made my way to Edinburgh (took *ages* to swim there, and my was it cold…). I had gone for about three days without any sleep at all, and having been so sleep deprived but hyped up on excitement, I was – again – stupid. I literally couldn’t feel any pain, so I thought that *finally* my body was agreeing with me and letting me do what I really wanted to do. So I trudged up one side of Edinburgh and down the other. Then, I decided I had so much fun, I did it again. I ended up walking about twenty or so miles the first day, and then twenty or so miles the next day up and down hills! And not just any hills, oh no, only Calton Hill, which overlooks practically all of Edinburgh. And I have the pictures to prove it.


Even after all that hiking, I still felt remarkably good! But I was pretty tired from all that lack of sleep, so I went back to where I was staying at around four o’clock in the afternoon. I can’t remember what I did that evening – I think I watched a movie, but I’m not sure – and then I went to sleep. For quite a long time. The next morning I climbed off the couch where I had slept, got to my feet, and promptly sat back down because I could not move my knees. Mind, I haven’t hiked since I was 10 because of all the toe problems. This was also the first time I had done any serious walking at all after having my toe amputated. I had killed my feet.

Thankfully, the person I was with was being very nice and agreeable, so I spent the better part of the day on the couch watching TV. Let me tell you, I was never happier to just sit on a couch and watch ‘Operation Petticoat’, a really pitiful episode of ‘Smallville’, and the BBC News. I did manage to walk down the street for lunch, but then I collapsed again when we got back.

Now. After all of that you’d think I would have learned my lesson. No. Because I was in Scotland, I had things to do. Later that night, my Mom arrived and so naturally I had to show her the Royal Mile. I walked twenty minutes to the Royal Mile, walked down about half of it, then walked twenty minutes back to where I was staying. Insane, aren’t I? Oh, it gets worse. The next few days were more leisurely, but over the course of the next week and a half I trudged around the Highlands, and then had to walk around a good portion of London during the whole Childnet Awards thing. And, that fateful Thursday night at the awards ceremony, I was on my feet in bloody high heels for over four hours.

By the time I got home to the good old USofA, I was absolutely miserable. My left foot had that exact same feeling of being stabbed. It subsided after a while and I thought it was better, but I always had this dull ache – which, of course, my mind has trained itself to ignore. For some reason that dull ache is back, and I’m not sure what triggered it. Maybe I did hit it badly when I passed out, who knows. Regardless, it’s back, and I think I’ve strained, torn, fractured, or upset something. I actually just took a look at my feet and noticed that something’s not right. On the inner side of my right foot, my foot is pretty straight. You know, the upperside of where the arch should be. Well, on my left foot, the arch is now apparent from the top of my foot. Along the innerside, there is a pronounced inward curve from (what should be) the proximal toe joint to the base of my ankle. The stabbing pain starts on just the other side of that proximal toe joint and follows my foot in a straight line to my heel. I’m wondering if maybe my orthopedic surgeon was right, that without the full structure there now that the toe is gone, the other bones may be shifting around and collapsing in on themselves. That’s a really pleasant thought, isn’t it?

Okay, so that’s the foot thing. Now for the MRI results. *sigh* As it says in the order for the MRI, the purpose for the test was “Progressive headaches and somnolence.” First off, ‘somnolence’ is my new favorite word. Condensed, here are the results:


“There is mild crowding at the foramen magnum with the cerebellar tonsils approximately 5mm below the foramen magnum which is borderline for Chiari I Malformation; however, there is no evidence of tonsillar beaking or mass effect.”


Translated, that means when I was an embyro, for some unknown reason my brainstem decided not to reside where it should, and found the environs much more inviting downward into a funnel where my spinal cord would normally be. Basically, it’s overcrowding the spinal cord, causing pressure on the brain and the spinal cord itself. This restricts – somehow – the flow of spinal fluid. I haven’t read enough to really figure it all out, but so far it explains a lot of my symptoms, most of which are ‘related to compression of the lower cranial nerves or brainstem structures.’ The site I found about it also said that symptoms are ‘vague and variable’, meaning not all of the textbook symptoms will always apply, and there may be other unpredictable effects.

So far, a lot of them fit really well. For example, the headaches that I’ve been describing to my doctors fit *perfectly* with what’s written about Chiari I Malformation (which I still swear sounds like some Pokemon monster – ‘Chiari! I choose you!’) It’s a headache that starts at the base of the skull, and ‘radiates throughout the back of the head, into the frontal areas and often around or behind the eyes.’ That’s exactly what I’ve been telling them. It also says, ‘The headache may be associated with nausea, but usually not vomiting.’ Who’s been having digestive problems for the past two years? Who’s felt horribly nauseated nearly every day, but has yet to throw up? ME!


– This one’s really interesting – Dysphagia. ‘Persons may report difficulty swallowing either liquids or solid foods, or a feeling of ‘catching’ in the throat when attempting to swallow.’ I’ve been having this problem off and on for the past two years, and I always figured it was associated somehow with the digestive problems, since it would tend to happen when I felt really nauseated. Now it seems it wasn’t the fault of my intestines at all, but with my stupid, overcrowding brainstem. How random is that? I’m very relieved to find out why I’ve had such a horrible time swallowing for so long, but I’m still worried because it also said, ‘If you have this symptom, your health care provider should be notified as soon as possible.’ Hmm. That’s a bit troubling. But I’ve done my bit; I’m setting up an appointment with Cute Dr. Carroll (since he’s my neurologist).


– This one’s a bit of a ‘Duh!’: Pain. Heh. Typically they’re referring to neck pain. That’s always where I tell my masseuse I hurt the worst, so that definitely applies. Also, visual disturbances are referenced. I’ve been having bouts of tunnel vision for nearly 7 years now. After a long period of about two years without experiencing it, it came back big-time after I passed out. And then there’s that whole freakish thing about my pupils having that significant difference in size. So I’m definitely qualified for a positive in that category.


– Ataxia (sounds like a planet in ‘Star Trek’): unexplained falling, bumping into walls for no reason, etc. People who have been reading my blog for a while may remember a period when I kept falling over unexpectedly while on vacation in South Carolina, and for several months thereafter. I wouldn’t feel dizzy or anything beforehand, I would suddenly just topple over. Apparently this is caused by lack of control over certain motor functions. That’s another big relief to figure out what could be causing that – it really frightened me at the time.


– Syncope, otherwise known as episodes of loss of consciousness. Uh huh. There’s only one slight problem with this one. According to what I’ve found, these episodes should only last between 30 seconds and 2 minutes. Mine lasted between 30 to 45 minutes. And, they also said that recovery should be prompt and complete, without any sense of confusion. I *still* haven’t recovered from it. So, that’s worrying as well, but I’m hoping Dr. Carroll will know more about that, if it’s really something to worry about.


– Other symptoms listed as rare but possible fit perfectly with several other random problems that have – at times – scared me to death. For instance, random nose bleeds, dizziness, nausea, fast or slow heart beat, hearing loss, depression, shortness of breath, and fatigue. I knew all of those things were happening, but apart from the nose bleeds, they’re awfully hard for other people to recognize. They aren’t outward problems most of the time, except when the fatigue becomes extreme, or if my heart beat happens to go wonky while I’m in the hospital. It’s almost like I feel vindicated now, finally I can prove I never made any of that crap up.

Of course, having a diagnosis isn’t always wonderfully happy news. Yes, I now have a bigger clue about what could be causing all of these seemingly random problems. But the catch is there’s no treatment for it, save for rather invasive neurosurgery. I really don’t like the idea of someone opening up the back of my head and messing about with my brainstem and spinal cord. I can’t imagine anyone who would like that idea given my situation. So, I guess I’ll just have to deal with the fact that I’m always going to be subject to these symptoms. I could wake up tomorrow and pass out again. But, then again, I’ve lived with that for so long, maybe it won’t be any different. But there was always that hope, you know? That hope that somebody at some point would figure out what was wrong with me, and be able to help. Now at least half of that has happened, probably, albeit not the half that I would have hoped for most.


I know I should still feel grateful that I’m not as bad as I could be. I know a girl who’s four years old now that I think has the same problem, only to such a degree that she only has the mental capacity of a two year old and isn’t expected to live past a few weeks from now. It could be far, far worse for me. At least I can still think. As long as I can think, I can deal with the fact that I could pass out again tomorrow, even though that seriously sucks. It’s hard, yes, but not as hard as it could be.

I think that sounds like I’m a lot stronger about this than I really am. Oh well. Most of what I write seems to come across that way. Honestly, I’m writing this to try to convince myself, not anybody else.

My MRI didn’t stop there, but thankfully that’s the worst of it. The only other thing it mentions is that there’s something wonky going on with my right eye, but I really don’t understand what it means. Thankfully the big long sentence about focal enlargement is followed by that all important sentence, “likely of no clinical significance.”

*sigh* Can I still take over the world being as tired as I am all the time? Maybe it’ll get better. I hope.

Okay, time for something happy before I go to sleep. I made another fun search query discovery tonight! If you search for “donnie Wahlburg” on MSN’s search engine, guess what number I am in the results. 😀 Number FOUR! Get THAT! Granted, it’s spelled wrong, but STILL! I love that! Either poor Donnie is moving down in the world, or I’m movin on up. Mwahaha. Now if only I could be number four and have it spelled correctly…

Thanks to all of the lovely people who signed my guestbook as I requested. Please, keep on signing! I want to know what people think of the pictures and stuff. Oh, and Milagros – I was actually just thinking about you lately! Please, send me an email.

I need a vacation. I’m so tempted to go on that cruise, the one I mentioned way back when I declared my ultimatum. As for that ultimatum, I’m not sure where it stands right now. One of the things on my list was a new movie buddy since mine has just moved away, but one of the other bigger things was something to help me feel better healthwise. Now that that’s looking dismal, is the movie buddy enough to outweigh all the other seriously bad crap that still has yet to be taken care of in the ultimatum? Hmm. Tough decisions. Oh well. I suppose I still have five months to figure that out, so no pressure at least. I am still very happy I have a new movie buddy, he’s a very nice guy. We actually went to see ‘Pirates of the Carribbean’ on Friday night. We were going to see ‘Bend It Like Beckham’ – like I mentioned here on Thursday – but Fandango.com lied and that movie wasn’t at my local theatre after all. Pirates was the last minute second choice. It was good, I enjoyed it. Of course, I don’t think it would have been anywhere near as much fun without Johnny Depp in it – he completely stole the show. He was Fabulous with a capital F, even.

I think I’d better go to sleep now, because my blog is lying – it’s not really 11:53:46PM. I’m actually editing a previous post containing something I wanted to be sure not to forget to include in this blog, but knew that I was going to write about the whole MRI thing and such. So I waited to finish it until now… at 3:05 in the morning. So it’s off to bed with me. Good night. Wish me luck for tomorrow.