my turn for the microwave

[Tod]

So, I spent my day off this past Monday with my head in Jeffries Tube for what was my ninth MRI in 21 months. At 20 months post-surgery, we've got enough growth to justify action. My neurosurgeon wants to take action sooner rather than later because of its location and Bob's blood supply. I agree and he is going to consult his radiation oncology colleagues at VCU and work out a plan of action and bring me into the discussion when they have a set of options and recommendations to choose from - I really like this doc and his approach to things.

It is very good, in my opinion, to have surgeon who is so open to radiation. Especially since he does not see another microsurgery as being to my benefit. He also has been clear from the beginning that this was a likelihood and simply did not want to do radiation until my body had recovered significantly.

At each appointment, which is always scheduled for an hour after the MRI, I bring a written progress report dealing with specific deficits I have had.  This report was a little different in that I had provided a bit of research and a theory regarding some of problems I have that are not obviously tumor-related. For example, I have had a variety GI problems since surgery, including absorption problems leading to severe deficiencies of vitamins B12 and D. I did some research and found that studies of patients whose vagus (Xth)  nerve was intentionally severed to curb hunger (years ago) years later developed similar deficiencies as mine. After all, the vagus nerve not only controls vocal cord enervation and autonomic swallowing, it wanders down through the abdomen and is responsible enervating for a number of GI processes. This theory caught him by surprise and intrigued him enough that he is going to do some research of his own. While this probably will not change my care since there is probably little that can be done today, I find it helpful to understand why things are the way they are. I likewise hope that it can be useful to someone else.

So, anyway, off of W&W and moving towards radiation.

-Tod

[Brewers7]

Keep us posted.
Susan

[Jim Scott]

Tod ~

This is certainly a long road for you but it appears as if you're confident with your doctor and focused on doing what has to be done.  Of course we wish you a great outcome to the radiation and know you'll keep us updated as things proceed.

Jim

[Tod]

Susan and Jim, thanks for the support. I do have a lot of confidence in my surgeon and my hospital.

Best,

Tod

[Tumbleweed]

Tod, I love your title for this post. You've obviously kept your sense of humor through all this.

Kudos to you also for researching your various health issues. As many of us here - who had been misdiagnosed for years before our ANs were finally discovered - know all too well, doctors don't know everything and they fail to notice the smoking gun sometimes. An educated patient has the best chance of a positive outcome. So, good for you!

I think you'll find your recovery from your eventual radiation treatment to be much easier than that for surgery. Although it will probably still be a bumpy ride... It sounds like you're on the right track and have an open-minded doctor.

Best wishes,
TW

[Mei Mei]

Dear Tod,
You're always so upbeat in spite of the long and hard road that you are traveling.   Who would have thought that after your 32 hour surgery over a year and a half ago that Bob Jr. would pop up.   Gotta put them on some kind of famly planning, Really!!!   You really are an example for us to follow.   I guess you know that my ansa hypoglossi nerve was grafted to my recurrent laryngeal nerve back in 1989.    It helped with my voice but not my breathing so now after 20+ years I'm showing slight signs of an enlarged heart just like those young football players that die on the field.    I feel good about you team at VCU.   They certainly helped out when you had that Bob taken.   It's comforting to know you're in good hands.

Thanks again for the tip about Vagus nerve.   I asked the Pulmonary doctor when I went in for the work up requested by the cardiologist and he point blank repeated twice:  I don't know about the Vagus nerve.   It's good you're surgeons don't answer you like that and are willing to listen to you as a member of the team which you always have been since the beginning of your AN journey down the Hypoglossi path.
Have a great weekend!   I'm in transit at JFK on the way home from Montreal where I was babysitting my grandchildren while my daughter and husband were at the Genetics conference.   It was a nice change from what I've been doing at home.

Take care,
Mei Mei

[Tod]

TW and Mei Mei, thanks for the support.  It's generally not hard to be upbeat. I have lots of support from my family, friends, and colleagues. And I have a a great team of docs taking care of me and I trust them completely.

Mei Mei,  I am glad you got to spend time with the grand kids. I hope hope you had a nice time.

-Tod

[Mei Mei]

Count your blessings.

I had a wonderful time in Montreal.    My grandson knows the alphabet and every time he saw a stop sign he said " Arret" spells   STOP.   It was a bit confusing for him so now he's back in Charlottesville where "STOP" spells STOP!

Children's minds are interesting.
Mei Mei

[Tod]

We have a plan. FSR at VCU using LINAC TRILOGY (look it up if you really interested).  Five days a week for just about six weeks beginning December 28. [We would have started sooner, but my wife and I are going to make the trip to Joplin a week-long journey.]

The hospital is only half-mile from my office so there will only be minor disruption to my work day, which is good since this covers the almost all of the legislative session and i spend much of my time being on call then.

I like the doctor a lot and he is much like my neurosurgeon in that he is easy to talk to and will take as much time as necessary to address my concerns. 

I was also pleased to learn that both docs work together at the local VA hospital as well. It makes me feel to know that our local vets get access to the same quality surgeons I do.

-Tod

[CHD63]

Tod .....

Sounds like a good plan.  This way you can give your Commencement address and get through Christmas before starting it.

Thoughts and prayers.

Clarice