Me and my head

Well...it's time to come clean here in blog land. The last month I've had some worrying health junk come my way, and in my New Englandness I've put my head down and gotten to work. Like if I posted here, I might unravel the worry, fear and concern. But if I just keep going at daily life I won't think about what's on the table.

Here's what's happening and how we got here.

In March, I had an appointment with an audiologist - my left ear is going numb/tingling/ants are crawling out of it -- with a family history of deafness, I figured I was losing some hearing. Nope hearing is great but "that's strange" the doc said, and recommended I visit the ear, nose and throat doc.

About a week later - I got to visit with him. In the 3 minute visit he looked in all the holes my head has and said that 'well, it could be tumor or just something strange'...hummm. Not a lot of information about the chances of anything, just a huge WHAT IF for you to play with for a while. Have a nice day.

So a couple days later I had an MRI -- an hour of clanking and banging in a tube that makes you feel like you are about to get launched in to outer space. After I confirmed that it was not a rodent running in my head, I was on my way -- to hang out with the WHAT IF's for another week or so.
Towards the end of the week when I called to see if there was any information I got the delightful receptionist....My name is Marie, I had an MRI on Tuesday, I wondered if there was any results'
Sigh....hufff....sighhhhh...It's going to be 48-72 hours before we get the report, then we'll call you.
Well, it's been 3 days, and I haven't heard anything. It would be great not to worry for the weekend.
Sigh...the doctor is in surgery. You'll have to call back this afternoon.
So I call back - he's out for the weekend (imagine that). Finally on Monday I get some results. There's no tumor, but the blood in my head in collecting in a funny way. He's going to consult a neurologist to see - if it's just a normal "every one's made differently" or it's something to be worried about. He calls back to recommend I meet with the neurologist to get some more information and see what needs to be done next.

It's now April 17th. Our anniversary. We get to visit the Neurologist. (Who happens to be a hot Italian Orlando Bloom type - who can pull off a soul patch nicely - simple pleasures). He explains that it's a blood clot that is in my head, in the vein that lets the blood flow out of my brain. It seems like my body has adapted to this by taking some of the smaller veins and rerouting to use those. I'm a-typical in that I'm not having symptoms (knock on wood) like seizures, thunderclap head aches, stoke, etc. -- I feel what I think is normal.
He poked me with toothpicks to see if there's a difference in sensation from side to side, checked reflexes, put cold things on my skin, looked into my brain via my eyes and generally was hot during the exam.
He showed me the MRI - a normal person's head and my head. The vein that leaves is black, not normal. The smaller veins are larger than normal. To compare the two pictures, it was pretty clear to me that there was a difference.
He wanted to do an MRV (looking at the veins) to confirm what he thought was going on, and see the extent of what's up. That was yesterday. So hopefully by the end of the week I'll know some more.
I would get to work with another doctor if there is a need for greater treatment. I liked that my doctor consulted with the other docs in the practice before meeting with me to review my films, since it's not an everyday case. I also liked that he said I would be out of his treatment comfort zone and would refer me to someone he trusted and knew would be able to take this on.
The issue is called sagittal sinus thrombosis - here's an article from Wikipedia.
The treatments are blood thinners, shunts, poking like they would in the heart but there isn't much information I've found out there that is easy to understand or outlines what to expect. Most of the articles are technical, or sad (like they discovered it after the person died) or the person presents in a typical way (like having a seizure that can only be stopped by putting them into a drug induced coma) so I've stopped looking around there. It just makes me more freaked out.

My worries are -- can the clot easily get dislodged? Should I avoid roller coasters or the water park slides? Can I ride an airplane? Can I have more little people? Once this clears up, can it come back? Why did this happen? Where did it come from? What the heck!

Do you know when you hear about someone having lice - and then your head starts to itch? That's what's happening to me these days - but every twinge or rattle in my head...is that a stoke....what's happening in there? I look in the mirror --- are my eyes both looking the same? Why did I just walk into that corner? (oh....I guess I always was a klutz)

To add to the fun and games - layoff rumors are flying around Yuri's work. Numbers like 20% are being thrown around. Makes us all a little nervous. Luckily, my work offers health care, so if it all flies at us at once - we can take care of the basics that way.

So that's the long and the short of it - I have had a lot of say - but haven't had the focus, energy or discipline to really put it all into words. To admit it in words makes it even more real than just talking "oh, I'm doing great, not worried". Actually, it's a little scary. It's like it's happening to someone else I know. It's makes me want to drink up each day and put my worry on a shelf. I try to do that. I lament when I mow the lawn (can I still do that?...humm) but I think this has likely been there for a while, and I've been ok. I will be ok. Ok. And that's fine with me.

3 comments:

Happy, healthy thoughts coming your way! I was actually going to e-mail you and see how things have been going - now I know.

As you said, your body's adapted. Things might can get better, and things might can get worse - but right now, things are fine. That's a good thing.

4/23/2008 2:42 PM  

Sending you many healthy and be well wishes Marie. I hope you get some clear answers and will be very fine and healthy indeed!

4/23/2008 7:55 PM  

Oh, Marie, I'm so sorry that you're having to go through this! You are in my thoughts and prayers for an easy treatment and speedy recovery. Please know you can email me anytime if you want to chat!! xoxoxo

4/23/2008 8:17 PM  

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