Showing posts with label arachnoid cyst. Show all posts
Showing posts with label arachnoid cyst. Show all posts

Sunday, March 25, 2018

Yes, it really is brain surgery

mri of the brain
The cyst is the round black spot at the end of the yellow arrow.

As some of you know and others do not, I was diagnosed with an arachnoid cyst in my brain (dubbed Archie) back in 2016 right before I got married. For a number of reasons (not the least of which is it's way more fun to plan a wedding then think about brain surgery) I decided to wait before doing anything about it, but this year it seemed to be growing and the doctor recommended removing it. 

First, a moment of gratitude: I want to say that there aren't enough thank-yous in the world for my patient and kind husband (and I do mean patient) as he deals with my moods and pain daily, my family who has been amazingly supportive (my parents came to help and I don't know how much laundry my mother did in her time here), my Portland friends and other friends across the country who have sent their love and good wishes, visited when I was falling asleep and continue to visit as I still can't drive. 

As you can imagine, the day I ended up being sent to a neuro-oncologist after the curious urgent care MRI, was one of the most surreal days of my life. I was sitting in the waiting room thinking, how the hell did I get here? I assumed it was a formality, not for me, and they would laugh at the misunderstanding and send me home. Instead, the doctor looked at me seriously and said he recommended removing the cyst in my brain. Seriously?

Instead of acting rashly, I asked if there was any harm in waiting and watching and although the doctor thought it best to go in and get it he said it would be fine to wait and watch over the next 3, 6 and 9 months. And by the way, it was a weird bit of dark matter on the image and, as a neuro-oncologist, he was of course concerned it was cancer. Again, what the fuck?

The curious thing of all of it is that it was found during a typical scan for a person entering urgent care with a migraine. The rub is that it's still not clear whether or not the cyst has anything at all to do with my increase in headaches. My only solace is that now, when I go to a doctor, I can forthrightly tell them that there is nothing else physically wrong with my brain and something still needs to be done about the headaches. However, I certainly hope that headaches are diminished at least in some capacity.

Over the next few weeks, I'll be publishing more info if you are curious, have a friend going through brain surgery, or just don't know what else to read on the vast internet. I will be giving you my story here. If you, yourself are planning for a craniotomy or know someone who is, this nurse gives a fabulous overview of what to expect.

Spoiler alert: no cancer! It's a benign cyst and is now gone. 



Tuesday, March 20, 2018

Brain surgery - 4 week plateau

March 10, barely 3 weeks after surgery. Visiting the Chinese garden.
I remind myself everyday how generally lucky I am that the surgery went as well as it did the cyst they took out show that everything was behind and the surgeon this week said that the cyst was actually congenital they removed it and it should never grow back. All of that is awesome, good and wonderful news.
On the flip side, I still seem to be getting migraines at least the cyclical ones and I'm still fighting some pretty frustrating dizziness and nausea. I do have some fatigue but it seems to be manageable and every day I'm able to do a little bit more. The lingering effects are really the dizziness - outside the house I still walk with a walking stick and often hold on to my husband when we're crossing the streets Etc. And sometimes the dizziness is paired with nausea. Riding in a car is also still not an awesome experience.
I didn't know that this could be a lingering piece and cause me to not be able to go out on my own at this point. It seems like a small complaint but with my strength growing everyday and what feels like all of my cognition intact, this is the piece that I am still trying to put in place.
The incision has pretty much stopped itching and it's definitely still drying and a little scaly and still gross but I'm so grateful to my surgeon who pretty much cut a very small swath of hair so that you really can't see the incision unless you're looking. It's funny because many people come over and exclaim "oh you still have hair!" I even took myself to the salon today to get just my bangs cut. I was very specific with the hairdresser and told her not to touch the back of my head at all and she just cut the bangs.
Today I managed a lengthy phone conversation, a visit from a friend and dinner out. We still spent the evening at home. I'm just happy that I can be more social now even if it does feel like I'm holding court at my house because it's hard to get around. I appreciate my awesome friends who are willing to come visit and keep my spirits up and talk about something other than my health once in awhile.
That's the progress for this week I hope these posts are helping those of you who are facing this currently or will be facing it in the future.