Wow kathleen you took good notes.--my post is long but anyone that knows me knows I have lots to say LOL
I know I got the spinal cow one written down somewhere LOL That was funny as well as some of his made up words. I too wondered if the typos would be in the transcript...great reading if they are
I can't wait to dig into the book Dancing through life with Guts, Grace and Gusto. Sandra was incredible to talk to. I would expect Allie to be the same. Anyone who's interested the book can be perused and orderd on Amazon.com
Let's see my notes:
• age of onset between 45-64 years old
• arises from the vestibular nerve
• more common in women
• twice as common in whites vs blacks (did they give a reason for this? or etiology is unknown?)
• increasing over time they do not think it is 1 in 100,000 but 2 in 100,000
not sure if this is just in referring to NF2 or An's as a whole
• originates from one abnormal cell
• genetic defect
• chromosome 22 is responsible for NF2
• NF2 produces merlin (merlin is a protein)
I learned that B Vitamins can aid nerve re-growth and t hose with facial numbness might want to try it. Around the 24 month, mark if the nerves have not re-grown it is highly unlikely that they will.
Facial neuralgia can be sharp and dull pains. I was under the impression just sharp. I suffer from dull achy pains in my face and was told by Dr. Wilcox that it is facial neuralgia. There are medications that might help.
There are no studies done or being done on AN’s and post surgical headaches.
There are no studies on the cognitive issues and AN that have come out as of yet according to Dr. Kunkel.
Wellbutrin is not for patients who have had AN’s due to the central nervous system.
Depression is a common issue with An’s and medication will help. Mania and Bipolor are connected in an unclear manner. I know I experienced this about 6 mos after surgery.
There was a german study done that put two cell phones next to an egg and supposedly after 30 mins the egg was hardboiled. They have not been able to confirm this data. The slide was funny.
Honestly there was no much to learn, see, do, and experience that anyone who is post, or pre treatment should consider attending in Chicago in 2009. I missed the one in Orlando by about a week. I was not given my diagnosis at that point. I see how it could be both beneficial and overwhelming to those who are wait and watch or trying to decide on treatment. From the feedback I heard, having the posties to talk to helped the ww and pre patience’s understand more of what their options are and what to expect after treatment.
