4 Month Update

A pretty good, as far as informative, appointment yesterday with my neurologists office. He was called to consult for an emergency but his team took good care of me this time. I was polite and clear about my needs. The appointment was still about one hour in length.

Things covered addressed such topics as pain management; updates in medication and the use of alternative methods in recovery; yoga, thai chi, and meditation.

We had a fun discussion about terminology in records. The specialist could not understand how anyone looking at my case could not understand that a craniotomy meant immediate brain trauma and injury. I explained that the words used by some assisting agencies actually require each accessory diagnosis to be listed. Comments about how silly that is were heard, but they did provide my formal diagnosis. This can help with recovery tools and help getting the right language to the right people.

I asked about additional support groups; the last brain tumor/surgery support group found in the Salt Lake area was cancelled with no further information provided. Some have suggested that we attend stroke support groups or PTSD support groups as the trauma and healing patterns are identical. This makes sense and many resources that help stroke patients are beneficial for me and others I know suffering from PTSD. Some of our challenges are unseen but present in every day function; cyclical thinking, memory retention, poor/limited comprehension.

I am making slow but consistent progress in my care and therapies. This is common, and I was told that many patients will plateau by about 6 months as they add more activities, disallowing for time to heal. Right now the restrictions to avoid driving remain in place as I address my response to stimulus and improve my tolerance for changes. I will need to take driving classes when able. (sad face)

Sadly, I am still ahead of most patients; I know who I am, I have kept a sense of humor, I can complete many everyday tasks- they just take so much longer than before. The specialist was not surprised at my level of limitation, this was hard as it demonstrates that many changes will continue to impact my life in both small and significant ways. I can't imagine the challenge that some experience not being able to walk, feed themselves, or communicate.

I have an additional referral to an audiologist as I still have almost complete hearing loss in my left side.

So, there it is. Month four post surgery. My next follow up will be set after my six month MRI, scheduled for January of next year.