It's almost the year anniversary of the day I was diagnosed with a large (1/3 of my brain cavity) arachnoid cyst on my brain Jan 28, 2010, so I felt like writing about the experience and what's transpired since. Here it goes....
The day progressed, I still wasn't waking up or finding myself connecting to anything I figured I should go home and lay down. For years I had been dealing with an inner ear issue called Meniere's Disease that will make you feel off kilter so I thought maybe this had something to do with the Meniere's and got on the train to Brooklyn.
Arriving in Park Slope my plan was to stop by the Blockbuster 1 block from my house to pick up the next season of Weeds I hadn't seen yet and grab a fresh squeezed veggie juice at the local health food joint.
Veggie juice in hand I wandered into Blockbuster, grabbed the DVD and proceeded to the counter to check out. The Blockbuster guy who I chat with often started his friendly banter and began asking me a bunch of questions. I looked at him, I couldn't really comprehend what he was saying, I started to get a bit dizzy, warm and confused, when I tried to answer words wouldn't come out of my mouth. They were there, at the front of my head, but not making their way out of my mouth, I shook my head, checked out and left the store.
Figuring I was dealing with a really heavy case of the dizzies from Meniere's I crossed the street to the deli to buy some Dramamine, that would do the trick, then I could lay down, watch Weeds and sleep this off. Except when I arrived at the deli I could barley get the word Dramamine out, tears came instead, I was so confused, getting frightened and really wasn't sure what was going on. Should I go home? Should I go to the hospital? I wasn't bleeding or dying that I was aware of so the hospital seemed really over dramatic. I started up the block to head home, then something stopped me, go to the hospital. The car service was right there, I managed to get into a car and get the words hospital out of my mouth.
Honestly I don't really remember the trip to the local hospital in Brooklyn, I think I called two people my ex and my friend Molly. I don't remember. By the time I got to the emergency room I felt very tired, I was able to write down what was going on with me, then I sat and waited to be called by the triage nurse. No recollection of how much time passed I was in a pretty big fog. The nurse took my vitals, etc. When she started to ask me questions I couldn't answer, when she asked me if I knew where I worked I nodded my head and started crying, I couldn't remember the words for it, the place I went 5 days a week for the past 6 years.
I was led into the actual emergency room, given the gown, blood drawn, I couldn't answer questions so I just pointed at Y and N and cried. My cell phone wasn't working so I don't remember how I got in touch with anyone, but Molly told me my ex Kevin was on the way to the hospital, things must have happened quickly from that point, I had a Cat Scan before Kevin arrived, the next thing I remember was the nice on-call resident (her name also being Shannon) was telling me that the head of neurology had looked at my Cat Scan and I was being admitted to the Neurology floor, they had found a large cyst of my brain and she was sorry. I do remember speaking to Kevin for a moment on the doctors cell phone, he was in a car and I was in shock, also trying very hard to reach my father and only getting my step-mother who was extremely cold and said something to the affect of "well what am I supposed to do?" I was in shock and really alone in that moment.
A minutes later Kevin arrived (Kevin and I no longer speak). But I can say right now I will always be so grateful for him being in my life, especially at the moment. He was a rock, making me smile, holding my hand, just being there, as much as we've been through in the past several years together, that moment defines the real friendship we shared. And thinking of it at this moment makes me very grateful for him and the time we had together.
I spent five days in the hospital. My father arrived on Saturday taking over dog/apt sitting duties from Kevin who had been splitting his time between the studio, my apt and the hospital. I made a decision early on not to tell my mother what was going on until I understood what was happening better.
During that five days so many people came to visit me, if I missed someone I'm sorry but here is what I remember
Tara
Raeann
Molly & Kaela
Moria
Alison & Marianna
Jim & Chrissy
Moby
Tad
Jason & Amanda
My room was like Grand Central Station they moved my roommate out giving me the whole space, it was also filled with tons of flowers.
Most of my visit I was hooked up to a brain monitor called an EEG. It was looking for electro-magnetic waves that were out of the ordinary, I had several more episodes while hooked up so the doctors were be able to see if there were electro-magnetic waves any during those times.
On Monday I had my MRI and left the hospital.
At this point I was still having episodes, here is what an episode consisted of:
-2-3 hours long
-confusion or general difficultly comprehending
-difficulty speaking
-semi-paralysis and then weakness on the left side of my body
-followed up by exhaustion and a very painful headache
Very similar to stroke symptoms.
The next step was to figure out what was going on and how to fix it. According to the doctors at the hospital I was in no immediate danger so I could go home and follow up with a neurologist. Thanks guys.
For the next few weeks my days consisted of having episodes and seeing doctors, my primary care doctor, various neurologists, etc.
Everyone seemed to be on the same page. They all believed that this cyst had been there since I was a baby and developed with my brain, there was no reason why it was causing problems now and they couldn't really tell if it was the cyst causing the problems.
Apparently the brain is a massive mystery and most of the answers to questions regarding the brain are "we don't know" unless it's something totally obvious like cancer, an aneurysm, etc.
Kevin was really helpful, he did a lot of research on arachnoid cysts. Which by the way means "spidering cyst", because it spiders around the brain it can't be removed, think of the way tree roots are in soil. It can be drained if needed, but that's an if needed and we didn't know if my cyst was growing so here comes the waiting game....
One doctor a hot shot neurologist put me on Topamax 50mg a day. This drug is used for many things including migraines, seizures, etc. The side effects are pretty gnarly and I got them all right away. I started Topamax around Feb 12, 2009. Immediately I had dry mouth, sweats, no appetite, I was exhausted, couldn't feel my feet or hands they just tingled. I was told this would all go away. I lost about 10 lbs (I'm not complaining) and within 2 weeks I was suicidal.
One morning I woke up, took a shower, looked down at my razor and thought "I should cut myself open with that" then I got out of the shower and called my therapist right away. Who then called the neurologist, who advised me to not take the other 25mg of Topamax that day, drop my RX down from 50mg to 25mg and call tomorrow to let him know how I was doing. Basically I spent the whole day frightened of my own thoughts and very alone, the next day I felt better. The thoughts were gone.
It took until October 2010 for me to finally feel alright physically. My episodes continued although shorter with the Topamax and I started to get very bad headaches. At one point a top neurologist at Columbia University suggested I go up on my Topamax RX to 50mg again, I tried and had the same suicidal issues.
It's been a long battle. Since Oct 2010 I've really felt good, I'm not exhausted, I rarely get headaches, I haven't had an episode (i'll explain the difference btwn episodes/aura vs seizures another time), it's pretty incredible.
And in December 2010 I had my MRI follow up and was told my cyst had NOT GROWN!!! Hip Hip Hooray.
The whole thing really put life in perspective, what's important, what's less important, the types of people I want in my life and how I want to be treated. Life is short, although there are days that seem to last forever and winter is always the longest season.
I'm so grateful to be alive and to have had this experience.
I have a lot of compassion for people with illness including mental illness, that suicidal episode really helped me to understand what people must be going through with mental illness, my heart goes out to them.
It's been difficult and unless you've been sick you really don't understand, I know that now. People like my friend Elizabeth who battled breast cancer more than once was one of the people who I could talk to who totally got it when I needed to just cry and wonder why the hell this was happening.
I can't believe it's almost been a year, my life is really different, I'm really different.
It's so great that you're putting this out there, Shan! I'm glad you're feeling better and please, please let me know if you ever need anything or are feeling alone!
ReplyDeletep.s. Hope Fred is feeling ok too!