So far, so good!

It’s been a hectic and harrowing week in the world of recovery from brain surgery! I went for my two-year, post-surgery MRI on Tuesday and then had an appointment with my neurologist on Friday to learn the results. As always, the majority is good news, but some things were also tough to hear. I will let you decide for yourself…. 
 

Recovery & Timeline:  My neurologist’s explanation of the likely reason for my original, several month decline (that happened in the back half of my first post-surgery year) was interesting. He said that all the trauma to my brain, plus silently aspirating saliva & some food probably gave me a ’sub-clinical infection’ (in other words, I was ’sick’ just not ’sick’ enough to require medical attention). He thought this level of infection would easily be enough to impede my progress & that it was just too much for my body to try to repair/rehab from surgery and fight the infection simultaneously.

On the subject of ‘getting better’ he thought that improvements through the first 2 years were expected, but gains beyond that were minimal IN MOST CASES. He then went on to say that given the amount I’ve improved in the last six months that those ‘traditional’ expectations were probably not applicable to my case. He did think that the further beyond the 2-year mark that time passes, that more significant gains become less likely (think of a bell curve and multiple standard deviations if that helps). Basically it was, “I don’t think you’ll improve much more, but on the other hand I didn’t think you’d come in here today having improved this much either.”
 
The classic Catch-22:  We talked a lot about the tumor, the surgery and my ‘pre’ & ‘post’ deficits. His explanation was that all surgeons make a choice during operations. The more tissue that is removed results in a greatly decreased chance of having a tumor recur. At the same time, the more tissue that is removed, the greater the chance of damaging healthy tissue and causing post-surgery deficits. In layman’s terms, I’m fortunate that I have not had a recurrence, but am paying for my good fortune in the form of funny speech & incoordination.

‘The Spot’: I have had a small unidentifiable spot/shadow on my MRI for 2 years. In reviewing past radiology reports, this spot was on my MRI even before surgery. Because it does not enhance with contrast dye or show tumor-like characteristics, it is not suspected to be a tumor. Because it was on MRI’s before surgery, it is unlikely that it represents scar tissue.

So, what is it? The two most likely things are tumor remains & scar tissue. Huh? Exactly!

With each ’suspect’ being unlikely, the only prudent thing to do is to continue to watch it via MRI in 6 month intervals. My neurologist said he ‘confidently believed’ that the ’spot’ was NOT preventing me from making any gains in recovery. He also says it does not pose any immediate health risk, hence his comfort in waiting 6 months between MRI scans.

Long-term outlook:  We also discussed (at length) my long-term prospects for more health issues. First, we talked about the idea of going to Mayo Clinic to receive an expert assessment & prognosis for my vocal issues. While he thought it was appropriate to gather information and plan for such testing, that it was also premature to go. In his opinion, as long as I am making strides in recovery (and he did note that he was able to understand me much more as compared to our previous appointment), that it was not a good choice of time or expense to go to Mayo.

With my tongue, palate, lips & facial muscles continuing to improve, how should I conclusively decide whether or not to undergo more procedures to make improvements in my voice? Basically from his perspective, any surgical options for improvements and/or fancy testing will always be an option for me, so why not wait another six months to see if progress continues? The uglier downside of this is that there is no ‘magic’ test that can tell me how much better I am going to get, nor is there any risk to waiting (there is no way to speed up or amplify the recovery that is happening).

As far as a tumor-less future, he did not rule out the possibility of another tumor taking up residence in my brain! In fact, given my history, I have a greater likelihood for a recurrence in the future. In his words, “Think of it this way…if the surgeon missed one microscopic cell, it could lay dormant for the next ten years and then slowly begin to grow back. Keep in mind that such a pattern would be consistent with your original tumor which was extremely slow-growing.”

He commented that as each year passed with an unchanged MRI, he believed the probability of a recurrence also decreased.

It’s been two years…..so far, so good!