About four months ago (October/November 2018), Russ began having chronic headaches which were debilitating and negatively impacting his quality of life. Coupled with those headaches began what we would describe as a general backslide in his health post his stroke and subsequent surgeries and treatments. More fatigue, amplified dizziness and balance challenges, and continued double vision. Lets face it, things have not been easy for either of us dealing with all of the changes in Russ' health and our lives. And it is doubly or triply difficult for Russ when changes upon changes occur, throwing his equilibrium off even more than he already has been dealing with. It has been a disconcerting few months, and a time when it has been easier to feel down and less hopeful than we normally aspire to be. We are human, and life has been hard as of late.
Fortunately, we had regularly scheduled visits with our radiation oncologist and our brain surgeon as part of Russ' care routine. He had both a CT scan of his brain as well as an MRI in January. They both showed as unremarkable. This meant that the source of his bleed had not yet scarred over, and also meant that there was no clear reason for the onset of his headaches. On the one hand, unremarkable is good as you don't want your brain scans to be unusual. On the other, it meant no answers.
Russ' care team continues to be amazing; concerned and intent on helping us navigate these unknown waters. After the oncologist and the surgeon collaborated, and Russ' case was discussed among the neurosurgery practice physicians, they recommended Russ undergo a CT angiogram. Said simply, it is a test where dye in injected into Russ' brain and then a movie is created, watching the flow of dye step by step. It is a risky test as the "camera" is threaded through an artery in Russ' groin, through his heart and up to his brain for the movie event.
We are fortunate that one of the best diagnosticians in the southeast is part of our neurosurgery practice, and after we got on his schedule, he performed the CT angiogram on February 12th.
Russ did well with the test, and had no adverse side effects or issues, which was a huge relief. Our talented doc took him through it with skill and steadiness. He was able to determine that the artery/vein juncture which was the origin of Russ' initial brain hemorrhage was no longer present. THIS IS HUGE NEWS! When I asked why the MRI and CT he already had didn't show this, he described it as those other tests are like Google Maps, and they can zoom in on the house. The CT angiogram is Google Maps on steroids, and it allows him to not only zoom in on the house, but also to see the squirrels in the trees. Said simply, his view was more acute. In the end, it meant we had confirmation that the source of Russ' original bleed was eradicated. He was careful to caution us that this doesn't mean that there would never be another bleed.
The brain is still largely a mystery. We don't know why hemorrhagic strokes occur when they do, and we don't really understand the cause, or why they stop or continue allowing some patients to live and causing others to leave us. So, we took his caution as the usual warning docs give about no guarantees. We are THRILLED knowing that the original source of Russ' bleed is gone. It is exactly the outcome we were shooting for when he underwent the radiation in March of 2018.
The CT angiogram did not give us any answers as to why Russ is having headaches. The best explanation we have is that with the type of radiation Russ had, there were multiple arcs of radiation passing through many differing parts of Russ' brain. Remember that each arc in and of itself wasn't critically toxic to the path it traveled, but each of the arcs ended at the point of Russ' bleed, that vein/artery juncture referenced earlier, and the combination of all of them arriving at that end point is what caused that juncture to scar and die off. We got the end result we wanted. However, the doctors suspect that Russ' brain is responding to the arcs of radiation in other ways, causing the brain to swell/morph/change/heal. We won't get confirmation, but the anecdotal suspicion is that his headaches and amplified symptoms are caused by his brain being irritated as a side effect of the arcs of radiation he had to undergo to kill off that bleed site. They also suspect that the symptoms Russ is experiencing will likely abate or even go away completely as time passes.
The headaches have already become sporadic, where they were constant when they started. We remain hopeful that although this journey is rife with stops and starts it will all work out as it should in the end. Even with all of the challenges, we are still and will remain grateful that Russ is one of the lucky ones; the ones who survive with manageable symptoms and find the light in life still shines, sometimes through tears or anger, but shining nonetheless.
On a happier note, we are celebrating our awesome news with a bucket list trip to Turks and Caicos. So Yay Russ and Yay Us!!
As always, we send love and light to all and encourage you to tell your people you love them, every day, for you truly never know what that day might bring. Peace. xoxoxoxo