To catch any new readers up to speed, I am a participant in a natural history study of NF2 at the Nation Institutes of Health in Bethesda, Maryland (United States). I will be closely watched and followed medically to monitor/observe the growth of my numerous brain and spinal tumors to study their growth rate and possible triggers. Knowledge of such information can help reseachers to problem solve a solution to slowing down or stopping tumor growth.
The study will last 5 years where I and several othr NF2 patients in the country will be followed up every 6 months with MRIs, blood samples, eye exams, swallowing tests, gait analysis, and other possible tests related to symtoms and side effects of the tumors or treatments.
My first visit was last August and so now I am back again. We flew all day yesterday (leaving Seattle at 8:30 am and arriving WADC at about 4:30 pm). Then we waited for the NIH shuttle ro take us into Maryland - and had to sift thu tush hour traffic.
This morning bright and early was mt first appoiuntment at phlebotomy/ TY`It was the absolute fastest and best blood draw I have ever had which includes 17 years of constant pokes due to the cancer and then NF2 diagnosis. No numbing of my hand, heating of my arms, nor anesthesiologist was neededec.
I am at the eye clinic now waiting for my eyes to dialate so the doctor cn look at my cataracts. So I apologize for any typows and spelling errors as I cannot see right now. I can just barely read the lettters on the keys. I definitelt am unable to read what I am typing. Therefore, I am going to sign off before this is just a post of unreadabler garble gook.
1 comment:
We just left the NIH NF2 clinic last week...I hope it goes well for you.
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