Today concluded a whirlwind tour of medical visits – specifically I have been to and through 11 appointments in the last 11 days! I have done everything from weekly scheduled therapy visits to meeting a new Primary Care doctor to performing tests to measure brain responses to visual stimuli. The medical tour concluded today with a visit to my eye doctor and an appointment with a new neurologist.
I did squeeze in a trip to the passport office to apply for paperwork for our honeymoon! I am unsure how they will react to a scary photo with my ‘wandering eye’ at the border, but you probably want to hear about the medical stuff, right? What have I learned in the last 11 days?
*** My eye doctor was extremely pleased with the health of my left cornea. So much so that I have been cleared to leave my eye untaped all day long! This will really help with my new glasses, as they were fitted with the prism overlays last week. I will still be taping my eye at night to help with moisture retention and I will still be wearing my patch while driving, but this was some very welcome news from the eye doctor. The prisms make my glasses a little blurry, but I only see one image while wearing them and as of today, that will be all day, every day!
*** My visit with the neurologist was rather uneventful. He had not received a copy of my most recent MRI and was not comfortable speculating on my recovery without seeing those images. He is also scheduling me for a BAER test (Brainstem Auditory Evoked Response). This test is designed to measure brain activity resulting from auditory stimuli and will be simliar to the vision testing I have undergone at therapy. For further detail on a BAER test, click here.
The neurologist did review a list of prepared questions I had and was able to provide some insight into some of the long-standing questions I have, such as:
Q: How long should I plan to be ‘recovering’ seeing as most timelines stop at 12 months?
A: I see a lot of cases experience nerve recovery pretty consistently over a two-year period. I have also seen patients make minor improvements over a five-year span.
Q: Fatigue seems to negatively impact all my deficits. I also have a very erratic sleep pattern. Do either of these statements come as a surprise?
A: No. Brain trauma patients almost always report increased fatigue as a side-effect. There is not a tremendous amount of knowledge about why this is the case, but neither statement is surprising in the least to me.
Q: Multi-tasking (ex: carrying a full glass of water AND going up the stairs) seems to negatively effect both activities. Is this normal?
A: Remember that activities that were ‘normal’ for your brain are now being re-learned on an individual basis. Taxing your brain by asking it to perform multiple tasks is definitely going to result in a decrease in proficiency in both activities.
Q: It appears to me, that my recovery is happening linearly (ex: eye improvements are followed by balance improvements and then by recovery of facial muscles) as opposed to multiple areas synchronously. Is this expected?
A: In short, yes. What you describe is most often the case for patients and their external improvements. Understand though that there is nerve regeneration happening in multiple locations at the same time. Your external experience relates to individual nerve endings making their connections, which generally happens on location-by-location basis.
Q: Is there anything I can do to promote nerve regeneration?
A: No, there is no ‘magic pill’ to help speed the process along. Staying active and forcing your brain to try and perform the activities desired seems to be the only stimulus required and you are clearly doing a good job with that.
Q: There are lots of surgeries designed to aid in recovery (vocal cord surgery, palatal lifts, nerve reconnecting, etc). How do I make an informed decision on which options are available to me and when the appropriate time is to have them done?
A: So long as you continue to see recovery and improvements, I would counsel you to wait on having additional procedures done.
*** I also visited with a new PCP this week to discuss my overall health and some lingering non-neurological side effects from the craniotomy. His feedback was as follows:
- He thinks I am really healthy, “except for the hatchet job your tumor did on your left side”
- He thinks a lot of the subtle things I am experiencing (dryness on face, acne on back) are all probably inter-related to some kind of hormonal deficit from the operation
I left them with lots of blood to study in their lab and will return in a few weeks to discuss those results. Interestingly, the internist I saw knew the neurologist I visited today quite well. He opined that “he is the best neuro in town” and seemed anxious for me to get some input from the neurologist.
hi matt. your website really helped me to read. you are a good uncle.
Matt,
Sounds like an incredibly long but fruitful eleven days your
eye and voice are making good imprvements, and I think this neurologist is another key member of the team as far as getting nerve signals and responses improved to other
parts of the body. gettig that internist onboard as your personal doctor and to quarterback all those specialists on your case with you will be great. I’m really anxious to see how it goes now.
Love, Dad
Matt,
I look forward to the neurologist’s comments after reviewing the MRI (as I’m sure you are as well).
The other updates are positive.
One comment that I’ll make is that although doctor’s are experts in these medical conditions your state of mind and positive energy cannot be measured “medically.” I know my vocal cord condition is not the same as your surgery and condition; however my doctor told me that I would be on medication for the rest of my life and that I needed to have a 2nd surgery on my vocal cords.
Well, here we are almost 2 years later and no 2nd surgery (full recovery) AND no medication.
Keep positive and keep your focus on your end result and I’m confident you will get their.
Blair