Spring Break '09

That was a fast week. We are back in Michigan. We had a great time in Florida, although I certainly felt old with all the young people converging for Spring Break.

I struggle to describe my current status. I feel pretty good a lot of the time and am able to manage my headaches most of the time. I am no longer constantly feeling overwhelming pain, which now comes in spikes. The headaches are clearly still in control of my life. It is unpredictible when I will have a good day or a bad one. The daily drugs are not up to full strength for another month or two, but do seem to be minimizing the steady background pain. I am just trying to enjoy and appreciate life around the challenging times, and breath a lot and take extra drugs when they do come.

I've become fascinated with taking pictures of birds in flight. They frequently do not cooperate, even though Nancy and Steve can attest to that fact that I did ask the birds nicely. They fly the wrong way, they refuse to fly, or they fly too fast to snap the shot. Despite their lack of cooperation, here's one that turned out pretty good.

For some silly reason, Nancy convinced me to have my picture taken. She suggested that if we both held our smiles, nobody would know that my facial nerve hasn't healed yet. I hope it gives you a chuckle. We were laughing so hard it took several attempts. I think this week helped me learn to laugh at the challenges of the new me.

Very Uneven Ground

Well, this week finds me in Panama City Beach, Florida with my friend Nancy Piper and her family. They had room for a stowaway when they drove down, so I was in. I have been focusing on my vestibular rehabilitation while down here. That requires a lot of walking on the beach. Whenever I am done with a walk, I need to rest my vestibular system. I am doing that by resting by the pool in the sun (vitamin D infusion). I think it is working!

Milham Park

It was beautiful yesterday. Kayla and Mark came and we went to Milham Park. Another good vestibular workout. And the dogs discovered geese. Good thing they were on leashes, or Paulo would have gone right in after them!!

Al Sabo Preserve

It has been awhile since posting. Yes, I am still here. Trying to walk every day. The weather has been incredible, and the ice finally gone from the trails at Al Sabo, my favorite place to walk. This is the winter version of the beautiful field there.

Vestibular Workout

Yeah!!! We made it back to Al Sabo Land Preserve for the first time since before surgery! Kayla, Mark, Paulo, and Gina all bundled up with me and off we went on a very cold but sunny day!! There was a lot of ice on the walking path, so it was slow going. But it was great to get out into nature!! My doctors would have been happy because I was walking on very uneven ground - a good workout for balance.


Kayla and Mark managed my ferocious dogs. . . .

I think Paulo felt very metro in his fur-trimmed coat, but he sure was warm!!!

That thing was big. . . but now GONE!!

Let me know if you have trouble figuring out where the tumor was - most can see quickly the white blob on the left middle of the screen (although that is the right side of my brain from below) As time goes by and all of this sinks in, I am increasingly grateful to be alive!! Even if that means taking some time to put Humpty Dumpty back together again.

Sally

I'm back from Mayo

I had a good visit at Mayo this week. I feel more hopeful after the visit. Prior to the appts I was pretty down. I did confirm though that I have a long ways to go. Things Learned:

1) My MRI was clear enough that I don’t need another for probably a year. I do return to Mayo in August, but I won’t have an MRI. The tumor is gone - left an interesting dent in my brain. But it hasn't grown back and they are very confident that it will not. Interesting tidbit - Mayo has 26 MRI machines. I was amazed.

2) The hearing nerve is GONE. It was tangled with a critical blood vessel, and too mangled to save. It was interesting to hear the brain surgeon talk through the logic of decisions during surgery. When I hear myself scratch my head it is what I thought - bone conducting sound to the left ear. My brain is smart enough to know where the scratching was.

3) The facial nerve is intact. However it was weak from the beginning of surgery, so it was almost ready to go even without surgery. It was good to know -kind of - that I would have had the problem even without surgery. The tumor was growing and stretching the nerve. We could see a little squiggle on the MRI that showed the still out of shape (not straight) nerve.

4) Nerve recovery requires the nerve to regenerate all the way, not just where it was traumatized, so from the brain out to the face. So my calculations were short. Nerves regenerate at a rate of 1 mm a day, so you can now do the math from inside my brain out to the face. It will be 6-18 months at least.

5) They do believe that my face will recover. According to House-Brackmann ratings, I to VI, I am currently a VI which is no movement. Driscoll predicts that I will become a II or III when all is said and done. That will be not fully normal, but definitely moving. Link thinks that my face looks tighter, which is the beginning of healing.

6) The right hand surprised everyone. They don’t have any idea why I couldn't write. Link said he thinks it was from trauma from the tumor being stuck to the brain stem. It is still improving but not there yet.

7) I met a wonderful headache neurologist. He knows exactly what my head is doing and has a database of acoustic neuroma and craniotomy patients with headaches. He already had a plan ready for me. Bad news is that it will take 3 months to get to full strength on a daily med. But he gave me good stuff for the peaks. I have “background” head pain all the time. I need daily medication to treat it. I also need to treat the Peaks with other drugs. Trying to tough out the peaks will make the background level higher.

8) I met with a vestibular therapist. He tested my balance. My eyes are doing a lot of my balancing. When I close my eyes, I tip over when standing still with my feet together. So he gave me some simple exercises to get my brain out of the "panic" mode when walking and moving. Overall, I think my balance was pretty good. However, I cannot yet type on my blackberry while walking :)

Thanks to all for the many prayers for me. I really do appreciate it. For those who want complex directions, please pray for the facial nerve to heal and for headache management with minimal side effects from drugs.