PLEASE READ THE NEW ARTICLE AT THE TOP OF MY BLOG PAGE!
I have finally found an article that in my judgement, explains this disease. I have CCM2-10 deletion. Anyone with this exact code of the disease are part of my family line. It’s amazing for me to have been told this, because I got a call from California from someone who has this same genetic code. This means someone so far away is part of my family line. Wow!
I’m not sure of what I have written in my blogs because my short-term memory is so bad at this time. I also have the very rare, recently found a CCM on the retina of my eye. It was found on the backside of my eyeball, which may explain why I have headaches that start on one side or pain in my eye. My husband and I went to see a movie recently and we sat in our usual spot that we like, on the first row of the upper seats. It is very close to the screen, but not on the floor. Afterwards my eye hurt for hours. I had to come home and keep my eyes closed in the dark as well as take pain meds. The next movie we went to we sat almost on the very top row and I was ok. Yay, because I love our dates to the movies!
I can now add this to the list of where my CCM’s are located and the deficits they cause in my life. I’m not being a whiney baby, I’m just one of a very rare condition of the disease. I also some years back, started noticing CCM’s on the surface of my body. At the time I thought they were just purple-red beauty spots. LOL Alas, they are not.
I am now trying to find a Neurologist in Louisiana who knows something about this disease. I am at my wit’s end trying to find one, even in surrounding states. If anyones knows of one, please let me know.
P.S. Don’t you love spell check! I do!
Melessia,
Dr Frank Cullicchia is a neurovascular surgeon at West Jefferson Medical Center in Marrerro (Cullicchia Neurological Center). He knows alot about CCM’s. He did both of my brain surgeries….the first one being in my spinal cord at c1 c2 and the second on on the left parietal lobe. He did my sister Susan’s brain surgery (you met her at the dinner with Connie Lee. He also did out cousin Nicole’s surgery. (Aunt Joanne’s youngest daughter).
Also, I see Dr. Rex Houser in LaCombe. He is a neurologist I’ve seen for years now. I love both these doctors now! I remember that when I first came to Dr. Houser for the “seizure disorder” I told him…”I am just coming to you for maintenance”…I guess I turned out to be a little more then that. LOL!!
Hope this helps…Love from your CCM 2-10 deletion cousin!
Bettina
PS Who did you speak to in California…it wasn’t Dava was it?
Hey, Tina,
I did try to reply to your post as soon as I got it. I did it on WordPress iphone app, and totally lost it when I tried to send it to you. I will have to learn a little more about WordPress i-Phone app before I try to use it again. I hope I can use it because it was so confenient to write on the go.
Thanks so much for the info on your neurologists. I will make an appointment as soon as possible.
So, how are you and the family doing? I can’t wait to see you all again!
It was not Dave that I talked to in CA. Is he the Dave that started the Facebook page for Stemmies? It is a FB page for people who have Brainstem CCM’s only.
Again, I am so excited about having a Doctor who actually knows about this disease.
I am planning to have a fundraiser this summer for Awareness of this disease. Maybe we could have the Doctors come and speak from a professional point of view on CCM’s. I would also love to have family members present to help people understand how the specific hereditary type of this disease works.
I will let you know more about the fundraiser later.
Much love to you,
Melessia