Feeling Good

It has now been over 6 weeks since my brain bleed, and I am happy to report that my symptoms are starting to improve. Over the past week especially, things seem to be getting better. I am hoping that I'm through the worst of it, and that recovery from this second bleed will end up being substantially easier and shorter than recovery from the first.

About a month ago, I had an MRI that confirmed the bleed. These are some pictures of my brain:

In this one (the most flattering MRI angle), the white splotch in the middle of my brainstem is the cavernous malformation/bleed location.

In this one, the cavernous malformation/bleed is the white thing surrounded by black. 

Same for this one. And yes, my eyeballs look freaky from this angle! Clearly the least flattering from this photo shoot.

I like looking at these images. Somehow it helps to be able to see a somewhat tangible representation of this thing in my brain. It is also interesting to compare these with previous MRIs. It is clear that the cavernous malformation is currently taking up more space in this valuable tract of brain real estate than it was before.

When my neurosurgeon looked at these images, he saw that the cavernous malformation has worked it's way toward the surface of the pons, and there is now what is called a "surgical access point." Because of this, and because of the potential for future bleeds to occur, he is recommending surgery. When I look at these images, I see that it is still right in the middle of my brain. While there may be an access point, accessing it would be difficult and dangerous, with a relatively high likelihood of causing new deficits (due to accidental squishing of healthy neurons) in the process of removing unhealthy tissue.

I am in the process of pursuing second and third opinions about surgery. Given how good I feel right now, brain surgery seems kind of foolhardy. On the other hand, it would be nice to have this thing gone, and to not have to worry about when it might leak again, and whether the symptoms it causes will be worse next time. This decision will not occur quickly or without substantial deliberation.

For now, I am trying to focus on being happy to be feeling (relatively) good!

Happy Spring!

Our Easter dinner:



Pierogies, red potatoes with butter and parsley, roasted asparagus, and red cabbage confit:


Our weather has been lovely and spring-like, and the weekend was happy and relaxing, which was much needed. Hope everyone else had a weekend just as good!

Mercer accomplished

Mercer Island half-marathon accomplished:






We finished, we made pretty good time (Jeff could have gone faster, but he stayed back with me the whole time), and I feel really good to have done it at all given my current health circumstances. Sometimes it is good to do hard things.

The run took absolutely everything out of me, and I spent most of the rest of the day in the recliner in the living room, alternately reading and "resting my eyes," with a cup of tea and a cozy blanket. I am sure I will sleep well tonight.

On the bright side...

My vertigo and numbness are unchanged, and possibly a bit worse since last week, but there are bright sides. Since Friday I've been feeling less fatigued, and I'm hoping my energy level will keep improving. The best part though, is that I haven't had too much nausea. Two years ago when I had my first bleed, the nausea was the hardest part to cope with, so being mostly spared on that front is a blessing.

I am adjusting to life with these symptoms again, and re-learning to work around the discomfort of them. I'm also finding myself intrigued by them at times. For example the fact that my numbness (due to the very specific location of the lesion) it is on the left side of my face and the right side for my hand leads to a very odd sensation when I wash my face. Rubbing my face on the numb side with a hand that is not numb, and on the not numb side with a hand that is numb is a weird feeling indeed. Also, I'm not sure how to describe having a half-numb tongue, but it is also a weird and interesting sensation.

I really appreciate the e-mails of support from people. I might be a bit slow in responding, and while there's nothing new about that, at least now I have an excuse :)

Here we go again...

As bad luck would have it, it appears that the cavernous malformation in my brainstem is bleeding again. I am numb on the left side of my face and in my right hand, and I have extremely uncomfortable vertigo and developing nausea. So this kind of sucks.

It's definitely disappointing to have this come up again. Re-bleeding is most common in the first 2 years after an initial bleed, and some people never have another bleed. I was hoping I would be one of those people. Each re-bleed indicates increased chances of a future bleed, and thus increased chances of more serious or more permanent neurological symptoms/deficits. So yeah, this definitely sucks.

But, compared to how things were 2 years ago, when I had my first bleed, I at least feel like I'm in a better place to deal with it. For many reasons.

First, I am living with my husband now, and two years ago I was not. The benefit of this, in both practical and emotional terms, is huge. My friends in SD were extremely helpful when I went through this before, but the whole lot of them could not add up to one Jeff in this respect (sorry guys).

Second, I know what the heck is going on this time. I am not totally freaked out, wondering exactly what this is, what I'm supposed to do, and whether I'm going to have to have brain surgery. There is uncertainty, sure, but I know exactly what that uncertainty looks like.

Third, I already know some tricks for managing these symptoms. For one, I know that exercise doesn't hurt, it helps. So yesterday Jeff and I did our 12-mile training run, as planned, and my symptoms felt a little better for a couple of hours (despite being physically very tired).

So it could be worse. I handled it once, I know I can handle it again, and I'm hopeful that once again the symptoms will eventually resolve. And hopefully for good this time :)