It has been a "whirlwind" the last few days which should have me feeling discouraged. While my dizziness is a little more today my outlook is better.
Saturday my wonderful sister-in-law cam for a visit. She is a guest that is NO maintenance and giving. Sunday, my husband gave me a surprise birthday party for my 60th birthday the next day. While, of course someone leaked the surprise, it was such a beautiful gift to have so many people I love attend. What a FABULOUS gift! Monday was my birthday and the family totally spoiled me all day. Tuesday we were out all morning visiting the ad agency my daughter works at and having a lunch out. Wednesday morning my dear sis-in-law left.
Yesterday afternoon I had a follow-up appointment with my AN specialist. I didn't know why I was asked to schedule it, because I am not quite 5 post CK months yet. Perhaps because of my balance issues. Whatever the reason, I was so glad to talk to him. My husband and I went in with researched approaches to fight imbalance. My dizziness often does keep me constrained. I am using a cane all day most days and most of the time the rest of the days.
He is not scheduling an MRI yet because it isn't 6 months. But he is scheduling vestibular testing again to see if it is worse than pre-ck. He is MOST understanding of my difficulties. I feel so lucky to have a physician that not only hears, but listens. I am waiting to hear about the scheduling for that. Afterwards we will re-meet and decide a course of action. Right now I do believe we will go the injection(s) of gentamicin into the balance organs to kill the vestibular sensory signal to my vestibular nerve on my AN side route. He did NOT think I needed the major surgery that the surgeon suggested. While it is viable option, at that point he might as well do the AN surgery at the same time. That is just what I was trying to avoid with CK. This is an in-office procedure. He goes in through the ear drum to inject it and it may take more than one injection. It will probably make me worse for a little while but eventually it will even out like it does with surgery. Weird thing to say, but I am excited that we have this viable option on the table.
Late yesterday afternoon we went to the Phoenix chapter AN meeting. The subject - balance. How perfect for me! The most wonderful aspect of the meeting is being able to meet with "Pauline" of this site. She is remarkable and in person she GLOWS! What an inspiration. Of course meeting with the others also is good. The lady sitting next to me was post surgery by less than a month and felt terrific. Her facial nerve was bruised, so she had was dealing with that but it seems like that is temporary and I was amazed at how great she was doing in all ways.
The doctor that spoke gave some very interesting descriptions of imbalance and issues concerning it. He is the one who read my first vestibular test results and will be doing the next ones also. There was a PT doctor also who specializes in vestibular issues. She was so good that I hope to see her no matter what I do and how far away she is. Afterwards, when talking to her I think we can arrange an alternate schedule so I won't have to drive or be driven way into Phoenix twice a week.
After we left the meeting we went out and ate and discussed all that we learned. I guess I just feel so much better having a path to pursue. I went to bed early and crashed!
Again...everyone.....you are all THE best!
Take care,
Mary
