Life has this funny little way of reminding us how very little control we really have over it. I suppose I took a somewhat unintended hiatus from this little peaceful spot, and I apologize for not making any kind of anouncement, but it was much needed, trust me. But for some reason tonight I found myself opening up good old Moveably Type. Needing to connect. To remember that I am real. That this life I am suddenly living is not some psychotic nightmare that I cannot awaken from.
OK, well let me start from the beginning. About a month ago, I started having headaches. Sometimes really really bad, like in-bed-in-the-dark-running-back-and-forth-to-the-bathroom-to-throw-up-wish-I-could-die bad. Sometimes low enough so that I could get up and function almost normally. But constantly there. Even as I write this I do so from behind a slight haze of pressure around my head. About two weeks ago I headed to the doctor hoping to get some relief, thinking perhaps I finally had gotten to the point with my migraines that I needed migraine medication. At first my insurance wouldn’t pay for the medication that was prescribed (we didn’t realize at the time that they would only pay for six pills at a time), so the doctor prescribed Vicodin. Yes, a narcotic. I was really leery about taking these, but broke down a few times right before I went to bed. They really did nothing for the headaches, and only served to make me dizzy and groggy, two very undesirable conditions when you have children. So, I had a follow-up last week with my regular doctor (the first time I saw a nurse practitioner). Since my headaches were not any better, and since I was waking up with headaches just about every day, as well as having them all day every day, he decided he should order a CT scan, just to rule out anything more serious.
So I go in to my CT scan this past Wednesday, with a headache, not really even worried. I mean, what could possibly be wrong? It’s just a headache, right? I breezed through it, and the next morning I went to see the neurologist to discuss the results.
They weren’t exactly what I expected.

First he just did the usual things, took my blood pressure, which has been a bit borderline the past several years, but not really considered high, asked me lots of different questions, such as had I ever had headaches as a child, had anyone else in my family ever had headaches, did I gain weight recently, had I always been heavy (yeah…I’m a big girl, and always have been…lol). He did most of the usual neurological examinations, checking my eyes, my gait, my reflexes, etc. Asked me about the headaches, how they were, did they get worse with strain, you know…just lots of doctorly questions. I answered them all dutifully, not really even wondering about where he might be going. So then, he tells me he wants to show me my head CT.
He takes me in his office, and shows me the film, and proceeds to explain the abnormality. Yeah. Abnormality. Because the CT scan showed that I have hydrocephaly, or an increased amount of fluid around my brain. He showed me a comparison film from someone else. There are butterfly-shaped ventricles in the middle of the brain, with wings that kind of look like two thin c’s that are the main ventricles that control spinal fluid going to and from the brain. Well, the reference CT he showed me looked like a butterfly with C wings. Mine looked like a butterfly with marshmallow wings.
So while I am still kind of trying to digest this, he proceeds to tell me that there are two possible reasons that he is thinking may be causing this. One is something called aqueduct stenosis, which is a congential defect, meaning I could have been born with this, and for some reason it is only flaring up now. This, to me, would be the ideal reason for this to be happening. This could be rather easily fixed, with medication only, or with a shunt placed permanently in my head to drain out the excess fluid. Because, as far as I can tell, hydrocephaly is a lifelong issue. It does not go away. The other possibility, of course, is a brain tumor. But I won’t even go into that right now. I refuse to even think along that path. The only good thing is that CT scan did not show any tumor, which is a good sign.
Basically what is going to happen now is that I am having an MRI on Monday, which should be able to better tell what is going on. They are also going to schedule a consultation with a neurosurgeon in a larger city, I suppose in a place better equipped to figure out and deal with whatever it is that is going on with me. I am not thinking beyond Monday right now. I am not thinking much at all. It really hasn’t even sunk in. Although I DID download and print out a last will and testament. Hoping that if I fill it out and notarize it, I won’t need it for a long long time.
What else can I even say? I am hanging on my the thinnest of threads right now. Just making sure my children do not find out what is going on. Trying to get through my days. My headache has seemed even worse, but I am pretty sure I have tension headaches on top of the pressure headaches. I have tried to meditate, I have tried to appeal to the goddess for help. Beyond that, I am at a loss, and can only cling to this wave and allow it to take me where it will, and try to have faith that I will wash up on shore when it’s done with me.

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Categories: Miscellany


Bink · August 16, 2003 at 2:40 am

I am glad that you are staying positive throughout this ordeal. I will keep you in my prayers. Even though we never managed to hook up on ICQ I am here if you would like to talk. I may not post regular but I am always on line. Take care.

brandy · August 16, 2003 at 9:51 am

Tr–i’m sorry to hear this is happening to you. there are support groups and message boards ‘out there’, with people who are or have been dealing with this same kind of thing–they just might be a component in the support you need to get through this time. bottom line, though, is to create a support network. find family, friends, acquaintances to talk with, relate to, let off steam to (like your blog!) and others who’ve been down this road and know what it’s like. you’ll make it through. this is just another one of life’s obstacles.

Darni · August 16, 2003 at 9:56 am

i’ve erased my entry three times. i don’t know what to say. after i finished reading the entry, i was tearing up. all i do is cry, angry tears, happy tears, bored tears, sad tears.
i’m thinking and praying for / with you. i hope you don’t need that thing you downloaded either (can’t even type it).

tasha · August 16, 2003 at 12:25 pm

Tricia, I’m so sorry!!! I know saying that doesn’t help much. I wish I could give you a big hug!! Stay strong girl, remember I’m here for you!! I’ll keep you in my prayers!!

Sue · August 16, 2003 at 5:45 pm

((((((((((((Tricia)))))))))))))) I’m so sorry! Please let me know if there’s anything I can do. Sending lots of love and positive vibes your way!!

Indigo · August 16, 2003 at 10:53 pm

Wishing you the best outcome at the end of the most joyful journey of healing and discovery.

Emerald Sky · August 17, 2003 at 2:01 pm

When does life start giving us breaks? Seems you and I have had more than our share of traumas lately. Hang in there, girl. My thoughts are with you!

Sandee · August 18, 2003 at 2:06 am

Sending you my most positive vibes 🙂 Good luck on Monday! *hugs*

Rose · August 18, 2003 at 1:14 pm

Oh Tricia! ((hugs)) I hate that you are going through this. I am wishing for the best and am sending you positive thoughts. Let us know how things go, okay? You are going to be fine. I know it. It is amazing what medicine can do these days.
You have my full support. If you ever want to talk, I am here.

Chelsy · August 19, 2003 at 9:18 am

Life always throws us curve balls. Stay strong, stay positive and always smile. Illness can change your life, but don’t let it change who you are. Best of luck to you! You have my warm blessings.

ann · September 11, 2003 at 10:38 pm

I am going throught the same thing, had an MRI and was told mild aqueduct stenosis. I am seeing a neurosurgeon and a neurologist next week… lets hope for the best… Good luck to you.

mia · January 19, 2004 at 11:00 am

my brother had this but was not fortunate enough to have a good doctor that was able to diagnose such a complex illness. May he RIP. Thank God that you have the opportunity to get help and that you have such a positive attitude. keep in touch.

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