Thursday, July 07, 2011

And we have an ID...

Shortly after my return to Michigan last week, I saw my neurologist.  For those of you who have been following this blog awhile, you are well aware of the struggles I have had with seizures and related neurological concerns.  My neurologist was very pleased with my progress and agreed with me that the medication seemed to be working well. (I'm currently 70 days seizure free for anyone who is counting with me).  However, after reviewing my MRIs, he was concerned about a lesion in my brain.  This lesion was not new, and had been there ever since my first brain imaging in 2008. Some of you may have heard me refer to it as "Spot" before.  Even though Spot was behaving himself, my neurologist still wanted it investigate further, partly because I was concerned about Spot, and partly because no one had ever been able to say quite what Spot was. So he referred me to a neurosurgeon.
I saw my neurosurgeon today, quite a nice gentleman.  I had no small amount of anxiety going into the appointment and am very grateful for the friend who prayed for me in the car before I went in.  The Lord has been so faithful in bringing wonderful friends into my life.  As I left the appointment I was both relieved and frustrated.  I was relieved because the neurosurgeon told me straight up that he did not believe Spot to be a tumor (something that had been mentioned earlier by other doctors) and reaffirmed that Spot was behaving in an acceptable manner.  Then he gave me what I had been searching for since the beginning of this journey: an identity for Spot.
The neurosurgeon is quite sure that Spot is something called an Arachnoid cyst. As far as I can determine, this has nothing to do with spiders, though the thought did bring a smile to my face. The National Institute of Neurological Disorders and Stroke defines it this way:
"Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord."
Based on my symptoms and the onset of them in adulthood, I likely have what they call a "secondary" arachnoid cyst, meaning it formed later in life, rather than prenatally.  To read more about arachnoid cysts, click here.
In many cases, arachnoid cysts are removed, especially if they are on the surface of the brain.  They can grow and put pressure on the brain causing all sorts of trouble.  However, the neurosurgeon I saw today expressed concern about trying to remove Spot.  Spot is located in my temporal lobe, right on the hippocampus.  Getting to him to remove him would involving messing with a whole lot of brain and could make things much worse than they already are. However, he decided to refer me on to a neurosurgeon who specializes in surgery to correct epilepsy and is an expert in removing things such as this.  Thankfully, this particular doctor is back in Ontario, and will be covered.   Evenso, the neurosurgeon did stress that I might not be a candidate for the surgery, based on the location of the cyst. 
So the feelings of relief came from finally having an identity for Spot and knowing that Spot is not likely a tumor and is not malignant.  That is a huge relief as that has been a concern sitting in the back of my mind for two and a half years now.  The frustration is still not knowing, what, if anything, can be done about it, other than treating the symptoms as needed.  For now, life continues as it has, rejoicing in every seizure free day.
 For those of you unacquainted with Spot, he is the little white spot, about 6mm by 9mm circled in red in the image. 


Angela Bouwman said...

Praise and rejoycing that you know what the spot is and that you have an excellence surgeon here in Ontario!

Dar said...

Finally. Now if they could also check your posterior fossa volume and the fluid flow and potential cerebellar compression at the foramen magnum that would be great.

Joy said...

@Dar - I'm not going to hold my breath waiting. For now I'm going to rejoice that they know what it is and that we have some semblance of control over it. Losing the headaches and nausea would be great, but for now I'll be content that I'm 79 days seizure free and counting.