Just a email to let you all know I am back home after being hospitalized this week. Last week I got really sick with head pain, super tired and not able to keep anything down. I had an MRI done on Monday which showed the swelling is increasing instead of decreasing on my brain. I asked to be referred to Mayo Clinic as he was not sure what to do for me anymore except keep going with the steroids. He gave me ant nausea pills and I went home. The pills did not help. So that meant I was not able to take my other meds for the diabetes, high blood pressure, or the steroids. Everything was snowballing so Lee took me to the ER on Tuesday afternoon. They spent me by ambulance to Avera Hospital in Sioux Falls. It was quite a bumpy ride for my head. I was doctored up so I could eat again. Tried many meds to help me with the pain in my head and neck. Morphine was the only thing to touch it. The next day I saw several specialist including another very helpful neurosurgeon. He said he would help me get in at Mayo if I wanted to for the next day if that is what I wanted. But he agrees with me that Dr. Asfora is an excellent surgeon and he would personally want him. But we both know Dr. Asfora PR
lacks. At the same time as I was talking to this neurosurgeon Dr. Asfora office called to say that they had held a special session with all their doctor staff that morning about my case. This is the 2nd one that was been called. They talked about a PET scan being done. The neurosurgeon in my room had just talked about this also. It would tell them if the tissue was dead or alive that is in the swelling area. If it was this it means awful steroids for 6 more months or so. However, it is alive then I could have them go in and scrap it out. I was to go in and talk with Dr. Asfora when I got out of the hospital that next morning. I was starting to feel better at this point but tired. I was looking forward to a good night sleep. But that never happened! They pumped me so full of steroids to get rid of the pain but it makes you hyper! Plus they came in every hour or so for something or another. It is good to be back home now and be able to sleep in my own quite bedroom so I can really get better. I also saw an endoc ( sp?) who deals with the glands. She asked if my pitaray gland had been looked at. It had been discussed in the past. She is going to study my case also. It is not something that it is pointing to strongly but I am glad to know they are looking at several things so we can find some answers soon.
So anyway, the next day I was at Dr. Asfora'* office and got lots of discussion time with him as he did not usually see patient'* that day. What surprised me is that we did not talk much about this PET scan that I thought was going to be the next test. He said it wouldn't tell him much more than he knows already. Instead, he started to talk about putting in a shunt. It would take and drain the area where the swelling is with a plastic tube that would run from my brain and be inside me draining into my stomach. Lee has talked about this before but I really don't know much it. I want time to study and learn more before I go with this. I do know it means having them cut a flap in the back of my head. It scares me some but I really am ready to move on as the steroids are not helping. I am thinking I will spend a week or so weighing this out and then probably go for it. I went to the library today to do some research but didn't find much. I think I will be online doing more but we have a little computer glitch right now. When I am done typing this we are going to try to fix it. Hopefully, we don't mess it up more but if you don't hear more from me than that is what happened. Today, I did get out for awhile which was nice to be a normal world again. I got my haircut shorter in the back so that if I do have surgery and they shave some back there it will not be as uneven. I guess it a way it was one of the first steps in moving on with the surgery. On by the way, my hair is falling out a lot these days. It is not growing and breaking off. Good thing I always have had such hair.
So many of you have written how you are praying for me. Thank you so much! It is wonderful to have people like you in my life. The past month it has been harder to keep my chin up as it has been 7 months since this started. But now I feel some hope again. The doctors all say that my case is not the usual thing at all. I guess I like to be different.