Monday, December 24, 2012

Expecting the unexpected...

Questions I have been asked:

Will they shave my head?  
No, they are worried that my long blonde hair might jamup their shears! Ha, ha...just kidding.  
I will have a small credit cardsize patch in the back of my head, near my neck that will be shaved. No wigs orextensions needed, as my top hair should cover that patch. It will take time togrow out, so no ponytails for a while.

Will I be heading to Mammoth Ski Resort to get aski run or two in while in Southern California after the surgery?
No, but I am sure the thought might have ran across Rod's mind. Iwill only be moving about minimally after the surgery and getting lots of rest. 
They will have me up and walking at the hospital soon after the surgery, probably with a walker. I hope they will provide robes if the gowns open in the back! 
The first few days I will be in some discomfort in the back of the head with nausea and possible vertigo, but the migraines of the past 4 months+ should be gone! 
I will continue to wear sunglasses for a while. I could experiencehaving double vision or blurred vision temporarily afterwards and will need towear an eye patch on alternating eyes for a while. It will depend on how fastthe brain can heal those damaged nerves. I hope they give me a black patch so Ican look like an evil double agent from an old spy movie or a pirate...arr! 
When I return home, Ihave learned from others that my fun meter will wear out quickly as my brainwill be working overtime to heal. So visits will have to be short and sweet in the beginning.
I miss seeing my friends and enjoy emails and Facebook posts/private messages. Rod will be reading them to me after the surgery. Email replies from me should not be expected for a few weeks, so best to contact Rod directly with any questions.

Will I need meals brought in?

I do not anticipated needing any meals brought in during my recovery.  Because of our special diets and my need to be organized, I have pre-made several meals and have frozen them.  Rod is a wizard with stir fry and I look forward to his stuffed quinoa portabella mushrooms, I am sure that would make Julia Child proud.


"Hi ya, Fernando here and I am computer challenged. I want to keep up with your posts and don't know how to find your website again.  What do I do?" (The name was changed to protect the innocent.) 

No worries, I have added a box at the very bottom of this webpage that you can type in your email address and receive all the latest posts to keep up without having to find the website. (Just don't forget to click on the email verification that you will receive in your personal email account.)  Sorry no IT will be provided by me during recovery, ...really, you don't want me helping you out while I am on pain meds!

"Hello, it's me, Zelda, your BFF!  I want to know how your surgery went. Can I call you or Rod on the 10th after surgery?" (The name was changed to protect the innocent, again.) 
Zelda! Great to hear from you, I haven't seen you since the Styx concert in 1979! As much as Rod or I would love to talk to you after surgery, the best way to find out how the surgery went is to follow this blog. We promise to post regularly to keep everyone posted. If all goes well, we might post some flicks and pics. 

What is the cause of a pineal cysts or tumors?
Unknown. Very little is known about the pineal cyst/tumor. This might explain the lack of accurate information out there amongst the medical field. A majority of doctors will say a large pineal cyst/tumor is asymptomatic. However, if you do a search on the internet you will find many people who have an enlarged pineal tumor also are having several identical medical symptoms. I was fortunate to find a private online support group of 100 people from around the world with almost the same identical symptoms. Coincidence? I doubt it. 

How did you know you had a pineal cyst / tumor?
I was having several medical issues last year that could not be diagnosed.  The main thing that happened was during a routine visit to my neurologist, I was complaining about headaches, vertigo, dizziness and nausea after what I thought was a virus I thought I had experienced recently. My neurologist asked me to follow his finger as he moved it side to side and I couldn't and it made me ill. He sent me onto an Neuro opthamologist and when looking at my eyes he could tell something was not right and ordered an MRI. From about that time, my additional symptoms came on constantly and stronger. At this point I don't go out as my eyes are very sensitive to light, motion and sounds. My neurologist and neuro opthamologist have been a God send and keeping me comfortable and teaching me how to cope with my condition with a Balance physical therapy and good medication until the surgery.


Sunday, December 23, 2012

Discovering the Bubble


During a visit with my Neuro Opathomalogist on 10/11/12 October 11, 2012 (that makes it easy to remember,) I was told they found a large pineal tumor located near my brain stem. The tumor measures 12.7mm x 10.3mm x 8.3mm and is properly called a pineal cyst/tumor that is located inside the pineal gland.

They believe the tumor to be fluid filled and benign. A biopsy of the mass will be done at the time of the surgery to rule out cancer. Since they believe it to be fluid base, I rather like to think of it as a bubble. It seem less scary that way.
The pink area is my bubble, I mean the tumor. Having a pineal tumor is not uncommon but the size is unusually large and putting pressure on a nerve that impacts eye movement and balance.

There is only 3 surgeons in the world that do this surgery with expertise. Dr. Shahinian (Scull Base Institute, Los Angeles, CA.) has 20 years experience with surgeries in the base of the scull, with over 4500 total brain surgeries and 300-400 pineal tumor removals.  I am lucky to have found this surgeon.

Below is a YouTube video of my surgeon, Dr. Shahinian, and bit more information about my condition. (You can skip the surgery part, it is a bit TMI for most.)

Surgery is planned for January 10th in Los Angeles, California. I leave for L.A. January 6th and plan to return to Eugene January 16th. I will be at Thousand Oaks Surgical Hospital for 2 days and recovery the next few days at a local hotel. They want you out of the hospital as soon as possible to get proper rest and reduce the chances of infection. The next two - four weeks after coming home to Eugene will be complete rest at the house as I continue my recovery.

Close friends and family will be helping me with communications of doing emails, phone calls and the editor of this blog as doing all this is starting to get more difficult and sometimes wears me out. 

Please feel free to post comments as your questions and comments are welcomed.