My brain is worse than I thought…

I saw Dr. Kavi, my neurologist, last week and she showed me the scan of my brain.  It was scary, for sure.  My cerebellum was about 40% smaller than before and the ventricles were greatly enlarged and pushing out on my brain.  There was some fluid around the edges of the ventricles.  Dr. Kavi told me that she believes I have something called Normal Pressure Hydrocephaly (NPH) but to be certain I would have to have a large-bore spinal tap along with several injections of fluid into my spinal cord.  This would take place over 4 days at the hospital – 2 hours each day.  If the result come back positive for NPH I could have brain surgery to insert shunts into my brain to drain out the fluid.  Without the shunts, I would deteriorate into something like Alzheimer’s (no longer aware of who people were or where I was).  There would be further worsening of incontinence and I would lose the ability to pick up my feet easily.  However, all of this is voluntary on my part – the testing and surgery, I mean.  The disease is not voluntary.  I either have it or not.  Dr. Kavi insisted it is an important decision and to go home and think about it, read about, talk about it, and make a decision in a few weeks (after I finish with my physical therapy for my neck and back including the intense headaches).  It is a heavy decision so I am talking about it and thinking about it and reading about it.  I cannot have general anesthesia so I would go into it wide awake and alert.  Now, I know the brain itself does not feel pain, but the bone does and I would feel and hear the drill as it drills into my skull.

MSA is killing me but I would be alert and know what was happening as I gradually lost my ability to hear, see, eat, move, etc. – alive in a body that can feel but cannot connect.  NPH kills, also, but robs one of the ability to connect but maybe you don’t know you can’t connect.  This would be devastating on my husband.

This is an important decision and I am afraid of making the wrong decision.  I still don’t know which way I will go with it.

MSA Support Group

Last week there was a question if there was a support group in Tampa. I replied that there wasn’t and then proceeded to create one. In only that week I have set a date, June 26, at three PM at the Temple Terrace Public Library. Now, I have never even been to a support group of any kind and here I am organizing and leading one. I have a flier completed and ready to post at Neurology offices around Tampa and I have notified three other support groups to post our meeting. There will probably be only a few attendees at first, but I hope it will grow. I also will work on finding a better locale for the meetings. I would like to go to a large nursing/assisted living facility or to the College of Medicine Neurology Department at USF.

One of the goals of the group is to expose the residents in the neurology dept. what MSA, PSP, CDB, OPCA, etc. look like and how they impact not just the patient but the families. Perhaps they will pay better attention when someone comes into the clinic with a variety of vague symptoms and think about one of these disorders and save the patient and family a lot of time and money by having to go back and forth from specialist to specialist.

Of course, the main goal, is a place for us to talk and support one another and to learn from each other. It will be a lot of work but I think it will be worth it. As my therapist said, “It’s not as if you do not already have enough to do”. Again, stay active, use my mind, and help others in any way I can.