Almost 11 months

I’ve pondered if I was going to post photos of my head.  I decided that I am, going along with my voice having value.  I found some that Mom took last September and October.  But I still haven’t gotten the grasp of WordPress 100% so I can only add one picture at a time.  GAH.  It’s funny because looking at this picture now I’m like, “Ummmm, Dr. K how come it’s crooked?”  But the freaking tumor was 5 cm.

I don’t get to ask those questions and as my Mom said…he was busy worrying about my brain, so whatever he needed to do he needed to do and got to do.  I had complications during the surgery, bit almost entirely through my tongue, etc. etc.  But what do you think might happen during a 13 hour surgery?  It could have been worse…my Dad used to always say that.  Things are tough (And HECK YAH they are!) but they sure could have been worse than they are.  Yes I have a genetic condition called Cowden’s Syndrome that is so freaking rare most doctor’s haven’t even heard of it.  Most doctors don’t even know what it is.  But I had a surgeon who was VERY GOOD and got out most of the tumor that he could without causing me more harm.  Thank you Dr. K.  I miss you!  I’m doing OK and I’m getting stronger every day.  I’m a survivor and Lhermitte-duclos & CS isn’t going to get me down!



10 thoughts on “Almost 11 months

  1. It’s been 9 months since I was diagnosed and I did have surgery, Endoscopic Third Ventriculostomy. They went in the top of my head to make a new passage way for the brain fluid to flow out because the tumor was blocking my third ventricle. I am feeling good, just neck tightness in the muscles. Trying to see another hill to get over in my life, I have had many.

    • My tumor was affecting my 3rd ventricle also due to the size, 5 cm. How large was your tumor?

      Wow! 9 months….I’m almost to 2 years since my surgeries. I remember that time well (right after surgery)…it gets better! I never thought it would but I promise you it does!

      Did you have to have a shunt placed? Did you get the diagnosis already of CS? Or was yours just LDD?

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