Tag Archives: neuro-surgery

Almost one year later . . .

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In about a week and a bit, I get to have another birthday celebration. Oct. 8th will be the one year anniversary of my brain surgery, which quite literally gave me my life back. I’ve been asked by some if I would blog a bit more about the past year of recovery, particularly by others living with epilepsy and some thinking about having surgery to deal with their epilepsy. Writing in the blog was one of the first things I did once I could move and stay awake while I was still in the hospital. It was the first sign my neurological team had that I was still able to read (or, at least I had a good time randomly typing — I’m not sure they knew which was the truth!). It kind of feels wonderful to be going back to Boston, very shortly, and being able to look all of those doctors and researchers in the eye and say “Thank you.” It’s not everyday you have the opportunity to say thank you to a creative, innovative, and compassionate group of doctors and scientists who, quite literally, saved my life. More later, but just thanks and grace, right now.

PS — And don’t worry.  I’ll get Dr. Sunshine to add his two bits worth!

 

Mostly Set to Go

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Ah, Boston.  The land where Rs either don’t exist on the end of words, or they are added when they actually aren’t there (example:  “pizzar”).  The land where you pay your toll to the Sumner Tunnel and the guy calls Jonathan “Pal.”   The land where Jonathan is kind of a folk hero because he can describe what it was like to be there during the blizzard of  ’78.  The place where, even though we lived here for many years, the antics of drivers can still surprise us.

It’s been a long day of appointments, but we are mostly ready to go now. Turns out that spending an hour+ sitting in the Chief of Neurosurgery’s waiting room is a really good way to end up feeling that you have no problems at all in the world. Today it was packed with people with shaved heads, mobility and mental challenges, and lots of stories. Just listening in made me realize that, if you ever want to be around a lot of courage, you should just go hang out in the neurosurgery waiting area. Particularly emotional for me was the young woman who has 2 stents in her brain because she was born with hydrocephalus and also shrapnel in a number of areas of her skull because she and her family survived attacks when they lived in Sarajevo. Hearing her telling her story, all the time with a face of bravery and  a  type of humor I’ve come to understand is critical to making it through these moments, put many things in my own life in perspective.

We met with Dr. Eskandar to confirm the details of the surgery. And then there was the great moment when he gave me a wink and said “See you tomorrow, shall we?” That’s a moment — when your neurosurgeon winks at you!

I was felt like a star in pre-op because it turns out that doing a lot of yoga and Nia keep your blood pressure and the rest of your body very healthy — all of those tests and numbers looked good. I have a delightful anesthesiologist (Standford Grad — Go Cardinal!) who was telling Jonathan where he could watch the youtube video on putting in a central line (I’m going to pass on that this evening).  Heard the general description of the gizmo they screw my head into so that it remains perfectly still while they do the surgery. It’s a lot to take in, and I am happy that I will not be awake for most of it.

Kind people seem to be everywhere.  Even the woman doing my blood work and my EKG told me, when we finished that she would be praying for me (and go by her church and light a candle for me).  I can’t imagine feeling more surrounded by love than I do right now.  And I love you, right back!

Game On!

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I added this picture because I like the idea of a bunch of monks saying “WHEEEE!” as they take a plunge into the unknown.  I can relate.

An update for everyone:

Jonathan and I heard back from a member of the team of doctors who have been making decisions about my surgery, and they have decided to go ahead with surgery on Tuesday, October 8th, as 12:15, as planned. Jonathan describes this surgery as “minimally invasive brain surgery,” in which they are taking out the lesion in my left temporal lobe which they believe is responsible as a starting site for the seizures. What they have decided not to do, at this point, is the more invasive surgery in which they take out larger portions of the temporal lobe and left hippocampus. The doctors are hoping that this surgery that takes “less real estate” (as they often refer to the brain) will stop or at least greatly diminish the seizures. If not, I might be facing a second surgery. However, the more invasive surgery came with more risk of significantly impacting my language and memory, and so I think we all feel good about trying this and hoping that it works (there’s a good thing to keep in your prayers!).

We are getting everything ready to head out of town shortly. Thank you to everyone who has been helping, in so many large and small ways along the way — they all feel huge. Thank you for supporting Jake and Leda (who will be here in Pullman during this upcoming week). Thanks to Chip and Trina at church, and the talented group at Aloft Yoga and Nia who have come together to teach for me and keep things going while I am away. Thanks to members of the CCUCC and UCC communities, the yoga/Nia community, the Muslim community, the St. Gertrude’s prayer chain, several LDS communities, the Hindu community, my friends who describe themselves as the “atheist well-wishers,” the Buddhist community, Native American friends, and many, many others who have let me know they will be holding me, Jonathan, Leda, and Jake close this week . . . It means a lot to us. We feel surrounded by God’s grace, your care, and the beautiful mystery that facing challenge in the midst of love brings front and center.

I have spent this past week doing some things for Jake and Leda, talking to my mom, catching up on some concerns with members of the church, planning and teaching Nia and yoga, and today I began working on an idea for my first sermon back at the church and some creative worship for Advent. I told Chip that it’s good to know that, even in the midst of a week like this, when I know something will be dramatically different inside of me next week, I still wanted to spend this week doing all of the same things I always do, because I truly love the many things I do that make up my life. I go into what lies ahead knowing that I journey with that incredible gift of feeling fully alive, and having the privilege of a life that is interwoven with so many wonderful people.

Brain scans galore!

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20130911_171535So, you may wonder, what does it look like when you spend a week getting multiple types of brain scans?  Here’s a couple from my trip to the Martinos Center in Charlestown, Massachusetts, last week.  The Martinos Center, a research facility connected with Massachusetts General Hospital, Harvard, and MIT  has an amazing  staff of people who were incredibly kind to Jonthan and myself as I went through several days of non-stop testing.  It’s a lot of time to be very still inside of a variety of tubes (for those of you who like details, I had an FMRI, 2 types of MRIs, a PET scan, an MEG, and a Connectome scan).  One interesting part of the process was being the first “patient” in the United States to be scanned as a part of the Human Connectome Study, which is the cornerstone of the initiative to study the brain developed by the Obama Administration.  I’m glad my abnormal brain can be of value to the advancement of science!  The many tests they did gave them much more detailed information that is helping them decide how to proceed.

So, what’s next?  There is a team of doctors and researchers that are “conferencing”  my situation.  At the moment, I am scheduled to have surgery in Boston in early October.  However, they still have to take a look at some information that came from a test I had done in January in Spokane in order to determine exactly how they want to approach the surgery.  The procedure they are hoping to do is one that Jonathan likes to describe as “minimally invasive brain surgery.”  However, there are still some concerns about if that will, indeed, stop my seizures, and they continue to have some concerns related to the language center in my brain and the point of origin of the seizures that could lead to yet another test (or two) prior to surgery.  So, while the surgery is currently scheduled, the date still might shift again in the next couple of weeks.  It’s surely a lesson in living in the moment and not getting agitated about uncertainty.

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On a different note, I really will try and be a “better” blogger than I have been, and I will also let Jonathan do some blogging, since he is great at it.  Turns out I love to write, but I really don’t enjoy writing about myself a lot!  However, I have had much to reflect upon and I would like to share some of it with you.  Epilepsy and impending brain surgery have proven to be excellent reminders of why the supportive, loving community I have around me of family, friends, church members, and yoga and Nia students are a gift that I am not taking for granted.  I’ve also been reminded of why having an ongoing spiritual practice is so critical to engage during the times when nothing “big” is happening, so that it is there and strong during times like these (especially if you have to lie in a tube, being really still, for multiple hours, multiple days).  Thanks to all of you who have been with me on this journey.  I promise I will write more soon!  ❤

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The cap for the MEG . . . Jonathan calls it “your granny’s swimming cap.”