Monday, November 7, 2011

Cerebellar Cognitive Affective Syndrome

I read an article this weekend about CCAS, the brain injury type that is the cause of my disability. This excerpt was of particular interest. I wonder if anyone else thinks this sounds a little bit like me. Hmm...

"Following the uneventful surgery for resection of the benign mass, she was noted to have a marked personality change, becoming disinhibited, disrespectful,  and childlike. Testing using the simple tools of behavioral neurology revealed impairments in working memory, perseveration, distractibility, and lack of mental flexibility. She also showed deficits on visual spatial performance.
Over the next few months her mother recounted that the patient would report inability to make a sandwichnot knowing what to do first, and in what order. With time she improved many of her abilities, but executive functions remained impaired, and the next two decades have revealed a pattern of personal choices, psychosocial interactions and judgment that have left her requiring regular family intervention to provide support and safety.
This combination of mood and personality changes with the cognitive impairments that could be demonstrated on neuropsychological testing were the first indicators of the persistent pattern of executive, visual spatial, linguistic, and affective impairments in the remaining 19 patients that we studied prospectively over the next 6 years, and which we identified and named the CCAS."

I might have been able make a sandwich but I could not pack a bag. My first day back at school in August 2007, I was reduced to tears because I could not figure out what to do to set up my classroom. I sat crumpled on the floor crying and confused. I thought I was just tired. It wasn't until spring break that year when I tried to pack for a vacation to Cancun that I started to see a pattern. I was up all night and in the morning, I could barely close my suitcase. When we got there I found I had no t-shirts, no toothbrush, and no underwear. I did have a number of empty cosmetic cases and ziplock baggies. I also had more books and crafts than I could possibly use on a week long trip. Nothing like this had ever happened to me. Doctors still said I was probably depressed or distracted because of the brain surgery 11 months earlier. I knew "depression" was not the cause but I did not no where to turn. 
What a long and bumpy road it has been to get here but here I am. For now, I remain optimistic about what may be ahead. 

Oh BTW I can make a taco, at least a taco costume. Here is Tess dressed as a taco for Halloween:


Lily was a mummy.

Aren't they so cute? I love my girls!

My best girl was Rock Lobster:


7 comments:

I am Calabresella said...

! So good to see you back- I remember your blog was privatized due to something that happened. I've put a link from my blog to yours. Again, glad to see you back and I look forward to catching up on all your posts - P.S. your dog looks yummy :P

zipperhead said...

I suffer from CCAS but have found it extremely difficult to find help due to the obscurity of the non-motor functions of the cerebellum.

Impairments of executive function are the most strongly and consistently described deficits with posterior cerebellar lesions. Cooking, for me, is impossible. I destroy every second can of soup I heat because I've completely forgotten about it 20 seconds after I stick it on the stove.

I hope you have found competent medical assistance that can assist rehabilitation.

This stuff is so incredibly hard to deal with when your alone, struggling and nobody will even acknowledge your problems.

I hope all is well with you.

Aly V said...

Zipperhead, Thank you for your comment and concern. I am very lucky to be able to work with the doctor who made the diagnosis. Some people with TBI can relate to the problem, but I completely understand the feeling of struggling in isolation, being misunderstood. It is mind-boggling. I have trouble articulating the problems (which my doc points out is also an executive function). The top CCAS guy is in Boston and I am in NYC. I have given up trying to understand what is wrong with me and am focusing on improving what I can do.

zipperhead said...

Wow! I assume you mean Dr Jeremy Schmahmann, indeed you are very lucky. Please thank Dr Schmahmann for his amazing work! He is one of my personal heroes and I have a huge amount of admiration, gratitude and respect for his work.

Thanks to him I have been able to identify and understand what is wrong with me, to a degree. Unfortunately, I'm in Australia and the medical community refuses to acknowledge my cerebellar pathology, treating me as if I suffer an untreatable mental illness. My mind boggles constantly and it is very upsetting.

Aly V said...

Sorry, miscommunication. I see Dr. Jonathan Silver. He is a leader in the brain injury field and worked with Dr. Schmahmann. It took three years to figure out what was wrong with me and Dr. Silver was the first doctor in New York diagnose me. I did indeed question my sanity at times. My neurosurgeon told me countless times that the parts of my brain related to my symptoms are nowhere near the angioma he removed. I bring a copy of Dr. Schmahmann's article with me to all new doctor's appointments.

Earlier this year, CCAS finally got a Wikipedia page. Although hardly a scientific source, it is an indication that CCAS is gaining public awareness.

zipperhead said...

Sorry, I jumped to conclusions when you mentioned Boston. I'm a bit of a Schmahmann fanboy, haha.

I've read a huge amount of scientific literature about CCAS and every year the quality of information becomes better. I love neuroscience so I'm very fascinated by "how my mind works" and strangely, feel a bit lucky for the chance to understand this stuff from experience. But, I really need some help with fixing my problems and that is difficult to find.

It was very nice to encounter your blog. Somehow, it has made me feel less alone so thankyou very much for that.

I hope all the best for your future :)

Navy Wife Janise Zapanta said...

Hi. I feel alone in this and wonder if I can talk to you both. I was diagnoses in June 2014- I have know there was a problem for a few years. But now I can no longer work. I need to talk with other people who have this. janise Zapanra Facebook or Janise211@aol.com.