One Year and Counting!

It has been one year since my craniotomy to repair four skull leaks. 

I am still not leaking, which based on what I know now, is practically a miracle.  I have found a support group of leakers on Facebook who have taught me a lot...mostly that I am very lucky and blessed.

I have not spoken this to anyone, nor have I written it, but even though I am healed, I am still scared.  Scared that I will start leaking again and my world will be turned upside down.  My ear hurts almost constantly (the side of the craniotomy and also the ear tube surgery.)  I am always worried that I might have an ear infection...which could mean the leaking has started again.  (My doctor confirms I don't!)

When I get a headache, I wonder if it will be THE BIG ONE...and a sign of another leak.  When I bend over to dry my hair, and stand back up, I wonder...will CSF pour out of my nose this time??  When I get a massage, and they work on my scalp, I am afraid they will disrupt the surgery and cause me to leak again. 

All probably irrational thoughts...but I have seen what this disease does to people and I don't ever want to go through it again.  I was lucky the first time because I was diagnosed and treated so quickly.  My FB friends are not so lucky and I wonder how/why my experience was so different. 

Mostly, I wish there was something I could do for the others who suffer from CSF leaks.  Even though I don't know any of them personally, I feel connected to all of them.  I hope my story gives them hope. 

I know I can't control whatever happens to me now...and if I leak again, I will just have to deal with it.  I feel so guilty for my cure when so many others are suffering beyond belief.  Guilty but thankful.  And scared...always scared.  Maybe one day I will be able to put this behind me and get past the fear.  That is my hope for myself. 

My hope for others suffering with a leak is that they will find a knowledgeable and compassionate doctor who will care enough about them to help them find a cure.  And for those still searching, I wish them the ability to HANG ON as long as it takes.