Good information, Richey! Thank you!
Jan, thank you for remembering my appointment, wow! I have had the demo at the ANA meeting. It was most impressive. Here is my update for all:
I had an appointment Friday with the surgical doctor. It was an information gathering appointment. I copied and pasted an emaii I sent friends and family:
Yin Yang, balance…..whatever you want to call it. Life is all about the balance. Without the unwelcome challenges how could we appreciate the surprise joys in life? So I am sitting on the curb watching for my ole friend joy. It is always there, sometimes it hides better than others. I do like to look at the world as my glass is half full, because it is!
I very much appreciate all the people out there struggling with their own issues, many people have much worse problems and my heart and prayers go to them. They give me the gift of knowing and balancing the reality of my situation. I am blessed.
Yesterday was a difficult day. First, I was dizzier than normal. Then my doctor appointment with the surgeon was in the late afternoon when I usually get worse.
Here is what he had to say:
Hearing
• My varying hearing is not uncommon (between bad and worse). I have had this since pre-ck
• A BAHA (Bone Anchored Hearing Aid) is an option for me and may be a good one. He really likes it and knows of many radiosurgery patients who have gone this route.
• He is not crazy about Transear. If I go that route, I will need to find someone else (of course, he is a surgeon, not a hearing aid dispenser.) He said many find it uncomfortable.
• He informed me the Cross Aid (sp?) may be another option. It requires hearing aids in both ears. In the bad ear the signal is picked up and transmitted to the receiver in the good ear.
• There is no hurry, we can wait until November to see where I at my follow-up MRI to see what we will do
Balance
• He witnessed how dizzy I am.
• He said because I have 24% left of my balance in the bad side, my brain is always trying to balance it with my good side through inputs from my vestibular nerves (one with the tumor). The signals vary so it is always adjusting, making me dizzy. This may get better, could get worse, could stay the same, could go almost away. That narrows things down for me – LOL. I have more issues with dizziness than the "average" AN patient, but at the same time it isn't unusual
• He wants me to continue with the balance exercises, push myself further (which is hard to do when you are not sure of your ability to stay upright, never mind trying to do something in addition at the same time!)
• I need to wait until November to have my balance reassessed to see what is happening then - sound familiar?
• When I asked about the labrinthectomy, he agreed it would get rid of the dizziness as being a major issue for me. He said it could be an option down the line. THEN the bomb dropped…..he said if he does it, what he would recommend is doing the Translab surgery and taking out the tumor! He is the same doctor that recommended CK before treatment. Surgery is just what I avoided by doing the cyberknife! He said it would be so close to the tumor if they do the cochlea surgery I could be free of the thing, in addition. The only big danger in that is the facial nerve. (AND the major surgery involved.) I think I like being dizzy and hearing is overrated. I did CK to try to preserve my facial nerve. That is one of the scariest side effects to surgery to me.
• He remarked, referring to my exceptional level of dizziness, and some worsening since CK that sometimes cybernife does make this worse. Without my dizziness, I wouldn’t have been diagnosed with my tumor as early.
• I may have more severe dizziness also because I had the entire dosage in one treatment instead of the three we were initially scheduled to do when I still had hearing to save.
I had heard from a wonderful little birdie that perhaps very low dosage valium twice a day would take the edge off of the dizziness. I was going to ask him about that and forgot!!!!!!! I feel DUMB! If I don't get relief soon from these exercises, I will call and ask. I can't wait until November. I will work like crazy to get on top of it, though.
My hero, Weldon took me on a date last night for a great dinner out. That was the medicine I really needed. Spending the evening with my sweetie! Today he is driving to Texas to see his Dad. He will return on the 29th. When he comes home, he will have the 2 grandkids with him!
