Recovering From Brain Surgery…The Good, the Bad and the Ugly

Neurosurgeon: H. Hunt Batjer, MD, FAANS, and Bernard M. Bendok, MD, FAANS, Northwestern Memorial Hospital, Chicago

Patient: Janet Cahill, age 54, Cerebral Aneurysm

Never in a million years would I believe this could happen to me. I now have cognitive impairment secondary to stroke after 11 hours of brain surgery for an aneurysm clipping over the brain stem. Wow, that sentence says it all.

What that sentence doesn’t remotely describe is how to cope with the changes that have occurred in me as a person, as well as the difficulties that I encounter each and every day. Brain issues that remain relate to attention, concentration, multitasking, and something called “working memory” (I can develop conceptual/reasoning approaches and goals…but the strategies to achieve these goals are forgotten). The best way to describe my recovery is to categorize events, activities and experiences as, “the good, the bad, and the ugly.”

The positive ways in which I have grown and the people who have assisted with that growth all fall into the category of “the good.” Essential to my recovery is the unyielding support from family and friends. One thousand, million small things that were done to help me and cheer me on can never be repaid. When friends and family saw brain deficits of which I was unaware, they never made me feel like an idiot for trying something they knew that I could not do. I would not be doing as well as I am today without their support and caring.

The assistance from my physician team can be placed in the ” the good” category as well. Drs. Batjer and Bendok are amazing physicians. They remained 100 percent supportive as I recovered, listening to my difficulties and assuring me that my improvements were remarkable.

The Rehabilitation Institute of Chicago (RIC) Ravenswood team should be commended for their ability to help me achieve remarkable recovery in a very short period of time. One example that highlights this phenomenon is helping me relearn to read. Picture this:

• Six weeks post-op — a magazine is just for looking at the pictures, my brain did not know you were supposed to read the article.
• Three months post-op — read one paragraph in People magazine
• Four months post-op — read one article in People magazine
• Six months post-op — read all of People magazine
• 12 months post-op — remember why I stopped reading People magazine; who cares about celebrities? Start reading books again — one small book in three weeks
• 18 months post-op — back to baseline reading speed — one book per week

I had to complete the same process for relearning pretty much everything. When I say that I cannot read, write, walk or talk, people do not believe me. The RIC team never really celebrates each improvement; they just say, “Next, let’s keep moving onward and upward.” What I now see is the result of the challenging, disciplined hard work that the team put me through.

The RIC physician team is also 100 percent supportive, but they temper the support with a dose of reality. My neurologist (who I have seen for 18 years as I battle with multiple sclerosis (MS)) was incredible in praising my recovery while never saying what he was really thinking, “OMG, what happened to the old Jan??” My internal medicine physician seemed more of a realist and helpful as he explained that my difficulties and challenges were normal and OK, not a result of my failing to do enough “brain” homework. The vocational rehabilitation doctor was the best at helping me understand what I was experiencing. Improvement would not result from more advanced brain training; I was in a phase of recovery where the emphasis should be on compensatory and coping strategies. This is neither good nor bad…it is just my reality.

The old me is gone, who is this new me? At this phase, I must, of course, thank my therapist, whose support during the process of grief for the old me makes my ability to function as a new person possible. Imagine yourself…how would you cope when you find everyday, routine life incredibly challenging? Forgetting keys; wearing two different shoes; getting on the elevator before you put on your pants or skirt; going out shopping, but forgetting to bring your wallet. The list goes on and on. I have seen all emotions demonstrated by my fellow patients in RIC rehab: denial, anger/bitterness, depression…by far the worst is the hopelessness that causes some to give up. There were times that I personally experienced all of these emotions, and therapy was essential for me as I processed through to acceptance and development of compensatory strategies.

I also place the opportunity to create a new me is also placed in “the good” category. I am just starting this process, but there are some items worth noting. I am no longer a workaholic which is good! I am able to notice/see things that I have never even been able to see before. It has been good to learn approaches to simple things over again; some compensatory strategies are better than the original way of doing things. I can laugh at some of the silly things that my brain does when it is distracted or tired. Chronic pain from MS is now completely gone…I put that in the beyond words of “the fantastic” category. And finally, I have learned to live in the moment which is good in an unbelievable and inexplicable way.

In the category of “bad”…I would put forgetfulness (the times compensatory strategies do not work), memory loss (especially the four years right before surgery), slower reading speed, difficulty reading lengthy instructions (can’t someone just show me?), brain fatigue and having to spell some words out loud in order for the brain to recognize the word and remember its meaning. Anxiety (about pretty much everything) falls into this category, but coping strategies definitely help prevent anxiety in the first place.

Finally, the “ugly”…driving in Chicago. The RIC team explained why driving is so challenging for the brain, but you can never imagine how hard it is and how bad the drivers in Chicago can be. Driving is now difficult beyond words.

We can all learn much from the Good, the Bad and the Ugly. Janet 2.0 certainly has.