Update on Smashagnome

Hello Everyone:

First of all I would like to thank all of you for taking the time to read my story.

It has been one hell of a ride!

After my surgery to repair a CSF leak, and laying on my back for a week with a spinal drain, the leak returned. It was brutal. Any time I stood up I would get a serious low pressure headache.

I went back to the Neurosurgeon several times and was told "it will go away on its own". Finally after researching the condition myself, I went back to the NS and suggested that I get put on some sort of medication to reduce the blood pressure.
The NS thought about it and said it wasn't a bad idea in principle, but he suggested that I take Diamox.

I started Diamox (Acetazomlamide - http://en.wikipedia.org/wiki/Acetazolamide ) and was on strict bed rest for about a month.
Finally with no change, a third surgery was scheduled.
Then, almost overnight, my swelling went down. My headaches started to subside. I called my NS to discuss this, as it was only a couple of days before my scheduled surgery. He outright cancelled my surgery and said it looks like the Diaprox helped.

Now several months later, I am in great health. No nerve pain and no headaches.
I am back to work full time, and taking on my additional responsibilities (such as on-call, and working overtime)

I wanted to post this information regarding Diamox. If you decide to go ahead with MVD surgery, keep in mind that there is a significant chance of a CSF leak.
If you do get a CSF leak, you should listen to the DR and STAY IN BED.
I would request Diamox as well, it apparently reduces the amount of CSF that is created, thus reducing the pressure in your head.

Thank you all for your continued support - and please keep in touch.

Smash

Wow Smash, so great to hear your outcome! Although sorry you had to endure so much to get there. Your story really is an example of how to advocate for oneself!
I’m so pleased to hear your update and wish you continued well being!
(( hugs )) Mimi

Ditto! I’ve been away too but so happy I dropped in this evening to hear about your progress and honest-to-god healing. And the fact that you figured out yourself how to get the job done blows my mind and is so encouraging to all of us. Your story deserves to be read far and wide.
Deep Bows
Bellalarke

I'm sooooo happy for you....I am assuming you are not on that med anymore- Diamox

I'm glad you got your life back / new life

I'm going to have to research what percentage of us with MVD have CFS leak --- I was terrrrified it would happen to me, but it didn't...... and doesn't mean that it won't ever happen if I ever need another MVD.

Thanks for sharing!

Pleased to hear about your positive outcome!

"I'm going to have to research what percentage of us with MVD have CFS leak"

I did this before my surgery and it was supposed to be something like 5%...... However, I believe it is much higher.

I am not on Diamox any more, and am living each day to the fullest. This nightmare may only be over for a brief period, as I have read all too many accounts of people having relapses of the GN/TN pain.

I hope you all have a great weekend, and I am wishing all of you pain free moments.

Smash

so glad it finally healed! you have been through the wringer!