Thursday, July 7, 2011

Eight Months/Final Post (probably)

In May, I had my six month post-op MRI and check up with my neurosurgeon. Everything looks good and I'm all clear for yearly brain MRIs. It will be nice to not think about it except once a year. Because of my Tuberous Sclerosis diagnosis (it rhymes!), I will also have yearly MRIs of my kidneys to monitor the lesions I have growing there. I also need yearly panoramic scans of my upper and lower mandibles (stemming from a tumor I had removed years ago that my doctors now suspect is related to TSC). I am by no means free of this medical circus, but at least the frequency will be less.

My hope in writing this blog was to provide my experience to someone who may be looking for answers. As I said before, prior to my brain surgery, I scoured the internet looking for personal experiences and was thankful for any information I could find that would help me prepare. So with that, I bid adieu.

Sunday, March 6, 2011

Four Months and Counting

Four months and four days ago I had my brain tumor surgery. It seems like a lifetime ago, and yet in the grand scheme of things, four months is not a long time. Doctors say it can take up to a year for a person to fully recover from brain surgery. The only residual effects I have now is an itchy scalp where the scar is. The dry, cold weather of New England doesn't help much.

I was so sick of my hair, trying to cover up the shorter strip by fixing my curls forward, that when it finally grew in enough, I had my hairdresser cut it all off. Very happy!

For anyone facing brain surgery where the incision will be from ear to ear, I highly recommend just shaving all your hair off (or at least cut it very short). I would have avoided so many grimaces to my reflection in mirror had I just gone for it. I may keep it short from now on.

With the major finding of my SEGA tumor along with a number of other diagnostic characteristics, I have been officially diagnosed with Tuberous Sclerosis. For more information about Tuberous Sclerosis Complex, follow this link:

Sunday, January 16, 2011

Moving right along

About three or four days after my last entry, I came down with a pretty bad head cold. All of my previous, post-op symptoms seemed to return, with the addition of sinus and nasal congestion. Unfortunately, I had to return to the medicine cabinet. I suffered for two weeks until finally taking a turn for the better. I'm now back to my pill-free, headache-free self. I can't remember the last time my head throbbed. Very nice.

I have returned to my volunteer position at the elementary school library and find that my concentration is at about 95%. Sometimes I feel a little addle-brained and it takes me longer to remember names or certain words. I don't know if it's due to the surgery or if it's just me putting pressure on myself to remember everything perfectly.

Every day my scalp feels different. Sometimes the scar itself is tender, sometimes it twitches, but it's almost always itchy! I can never totally forget about it, especially since my hair isn't back to normal. I am so close to cutting it even shorter, but my friends tell me to be patient. At least it's hat season.

I had another follow-up MRI this past week and I have an appointment with my surgeon next week. I look forward to seeing the changes in my brain. Hopefully I'll get to see what the titanium joiner plates that they reattached my skull with look like.