Hello, I am so grateful I found this site...I have the rare Idiopathic Hypertrophic Pachymeningitis according to the CDC biopsies from my tumor resection in Nov of this year. Now, there are many more tests I will be undergoing this next January at Mayo Clinic plus I am part of a special Research as well there.

It is amazing how Sept 24, 2013 will always remain a "huge change" of my life. I have not been able to work or drive since that day...and met so many different people I had never thought of meeting in my lifetime...but here I am.

I still have trouble with speech and therefore some writing, so forgive me if there are any errors. I am being treated for my focal siezures with Keppra at this time.

Through God's blessings, I do believe in prayer, especially when my neuro surgeon prayed with me just before the craniotomy...I am still here. If you have ever encountered a Near Death Experience, you will understand that when I say it was not "my time to go"...the Lord told me this during my surgery which had some unexpected problems.

Hello, I don't have your problem, and I'm so very sorry you suffered your life changing event Sept 24. I had a massive seizure in August 2012, diagnosis unknown but attributed to acute headache pain. In and out of hospital since August 3 2012, countless anaesthesia and in June this year for a double spinal fusion, I found, I was surprised to "wake up" what a feeling, so very strange. We are here because it's not our time to go. I have had a few "near death" experiences in my life time, first when I was 6, my heart arrested. I still recall clearly coming back, in childhood terms, there was nothing and then everything was white and I could hear the sea, I came around to find a needle in my arm and crash cart and all hell going off. Undetermined diagnosis but attributed to febrile convulsions. Life is what it is, enjoy what you have to the best that you can, there are blessings to be found in a number of things, many of them oh so small that to another they would be missed. We meet many wonderful people on our path to wellness, many suffering the most atrocious illness and pain, and yet, we find the time to smile, give and share. My last hospital visit just prior to Xmas I met some cancer patients who are enduring and trying to live. Life can be cruel, I don't know why. Be safe, be well

Joanie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Four years ago on December the 10th I had surgery to remove a scare from my brain, which I have had for over 40 years. Because when I went in and knew God was with me I felt safe. I have epilepsy and after that surgery I have not had any more seizures. My prayers were given to me because of my belief in God.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene