Friday, April 2, 2010

Too Much Brain To Contain...

Fair warning to all...this post is not a happy-go-lucky, snarky, sarcastic fun post...sadly this one is a heavy, crap I'm dealing with, have finally gotten to a point where I'm ready to share a bit, okay, here we go kind of post.  You have been warned!  

A lot has been going on in the last two months, and now that I'm finding out more, I feel more comfortable sharing more information.  Don't get me wrong, I have been more than willing to share info with folks, but because I haven't had definitive answers/better ideas of what is going on until recently, I wasn't ready to share news with the world.  Even now, I don't know all the details, as there is more investigation to come.  I promise to keep you all posted though.

I had an MRI done in January for my migraines.  My mom suffered from migraines until after she had us kids, and my sister suffers from them as well.  Let me tell you, feeling like your brain is being smashed by an elephant into a box the size of a pea, not the best feeling in the world.  (For those of you who know what this feels like, you understand.)  Most migraine pain is pretty localized to one side of the brain and typically towards the front of the brain/skull.  My headaches on the other hand, are distinctly different.  Mine are at the base of my skull, and have been for years.  I've been able to cope with migraine pain pretty well for a number of years (the first one that brought me to tears was just after college), however over the course of the last 6-8 months, they are becoming more frequent and increasing in pain.  To the point where I had one semi-recently that kept me in bed for 18 hours, and not allowing me to watch my beloved football games, let alone cheer for any teams.  Not only did I miss most of that Sunday, I had to stay home from work the next day and go to the doctor (again) regarding how these are getting worse.

I love my regular doctor, and she has been amazing for just about everything I've ever had to see her for.  It's her office that I'm not the biggest fan of.  I called to make an appointment after spending all day that Sunday in bed and part of the morning Monday.  I specified that I didn't want to see one of the PA's or a nurse, I wanted to see an MD.  I got a DO (I know, to some this is semantics...bear with me...) who I had never seen before and knows nothing about me.  I tell her what's been going on, express serious concern over the fact that these have been getting more frequent as well as more intense over the last 6 months, and asked if it was time that we do something like an MRI or a CT scan.  I was told no, and to "try this new migraine med".  Grrr...

The next day I went to work, (by the way, the new migraine med didn't work) and spoke with Dr. M, the doctor that I work with.  I asked him what he thought...he cut me off and asked "when was your last MRI or CT scan?" when I told him I hadn't had one yet, he stopped me, and promptly ordered one.  One MRI later, we have a very pretty picture of my brain, and on the report, the radiologist noticed that things didn't look quite right. 

I have been diagnosed with a Type 1 Chiari Malformation.

No, this isn't cancerous, no it isn't fun, and yes, it explains a lot.  Basically, Chiari is when the lower part of your brain is so compacted into your skull that it tries to come out the bottom of it and into your spinal column.  To put it in simpler terms...my brain is too big for my head.  It explains why all my headaches are at the base of my skull instead of towards the front of my head.  (I shouldn't say all, most.)  I was born with my brain this way.

I have had two appointments with two different neurosurgeons in the last two weeks.  One of which is nationally known for his work with this specific type of malformation, the other is one of the neurosurgeons who refers patients to our practice.

At my first appointment, Dr. O was very nice, and I was lucky to get an appointment with him so quickly. (Yay for working in the medical field.)  A good friend went with me to the appointment (thankfully she drove, otherwise I don't know how well I would have done) and I had a very brief "Hi, how are you" meeting with the doctor, where he tested arm and leg strength/weakness, balance (I'm a klutz anyways, but hey, he asked me to walk...) and sensation.  Yes, all my limbs work, no, I'm not the most graceful, and yes, I can feel everything.  (Dr. N did this at my other appointment as well...standard tests...)  At my appointment with Dr. O, my cd w/my MRI images on it wouldn't load in their system.  So, I couldn't discuss what we saw on the MRI, which was frustrating, I was really hoping for some answers.  Instead, he's ordered a more comprehensive MRI, along with an appointment immediately following with him.  Hopefully then we will be able to compare the MRI's, and get some more answers.  I met with his nurse practitioner four days later, and went over a lot of other things that pertain more to general health than just the Chiari.

This week, I had my appointment with Dr. N.  Dr. N and his partners refer patients to us often, so there was a little more comfort level, plus I am pretty sure this isn't the practice I want to go with for my treatment anyways, so I was going as more of a professional courtesy.  (Nothing against Dr. N, he's very nice, but their office is not my first choice.)  My MRI images DID load for him, and we did discuss more since we were able to actually LOOK at what was going on.  One of Dr. N's partner's, Dr. M happened to be in the office and we all three were looking at my MRI.  Come to find out, not only do I have a Chiari, but there is some serious crowding going on with the right lower side of my brain as well.  Just imagine my surprise/ultimate JOY to find this part out (and yes, I'm being sarcastic) about my noggin.  After having this conversation, Dr. N and I went into his office and sat and discussed the fact that yes, I would indeed be a good surgical candidate, but that I am not in need of surgery tomorrow.  Does he think it will help my headaches?  Yes.  Does he proceed to tell me that this is a surgery that is going to hurt because of where the incision would be?  Yes.  Do I proceed to feel a panic attack coming on?  You bet your Sweet Sally I do.

I still have another appointment with Dr. O for another MRI and an appointment with him immediately afterwards on 4/12.  I am definitely going to point out what Dr.'s N and M pointed out to Dr. O at our appointment to see what his thought is on that...

Am I doing okay with this whole thing?  Not really.  Do I force myself to push on through and deal with things as they come and still try to function as myself? Yup.  Am I anxious about the actual results of the second MRI...yes and no.  Do I know for sure that this is out of my hands and that all I can do is trust that God is going to take care of me and this "thing"?  You bet.

I have to keep an upbeat attitude about this, because I refuse to be brought to the point of insanity by something I have no control over and have apparently lived with all my life.  Instead, I greet this with humor because I can't cry over it every day.  My good friend C has come up with a name for my little problem, and we are from here out calling him Randolph.  Randolph, meet everyone, everyone, meet Randolph.  Now that the introductions have been made, here is a picture of what's going on for you all.


Do you see the little tail that is at the base of my skull?  (Not the long part that runs out the bottom of the picture, but it's riiiiiight next to it before that drops down my spinal column.)  Yeah, THAT is Randolph.  (Annoying little bugger.)

Here is another picture, this time of the crowding that is going on in the lower right side of my skull...



Do you see how it's kind of all squished up on the right?  Yeah, not supposed to be like that.  Supposed to look a LOT more like the left side.

SO...all that to say...this is what's going on right now...it sucks, I'm not thrilled with potentially facing brain surgery, but if it's what we deem is the best situation for my head...a Zipperhead I will become.  (That is what they call folks who have had the decompression surgery, because your scar looks like a zipper on the back of your head.)

I will answer and and all questions I can as I can, I've started doing some research and have found some folks here in the local area (one even at my church) that have had the same thing, so it's nice to have local folks to network with and talk to about what is going on who understand completely how I'm feeling.

For now...Randolph and I are headed into the weekend.  :)

1 comment:

Barefootin said...

I LOVE YOU!!!!! And I am glad that you are getting answers - I know not really good ones but hopefully helpful ones! <3