I am now 5 years past my AN surgery, and I'd like to offer some practical tips on coping with the very real problem of cognitive dysfunction related to AN tumor. First of all, I'm an RN who also has a strong background in psych and the developmental sciences. So,all that knowledge, I'm afraid , was pretty much to my disadvantage in the beginning, because I knew all too well what was happening to me. The problem was trying to convince my world-reknowned physicians of the reality of my problems and that I needed help - they seemed unaware that my symptoms were related at all to my surgery. In fact, when I explained that I was having "cognitive problems", the surgeon said he could refer me to a good psychiatrist who could provide me with cognitive therapy. That is a term for treatment used for depression, not what is needed for the neurological problem of cognitive dysfunction, which is memory loss, problems in math, reading, spatial functioning, fatigue, etc. Apparently from what I have read, it is not widely known that that cognitive dysfunction can be a possible problem from AN tumor. My tumor was relatively small (1 cm), right side, middle fossa microsurgery 8 hours with no complications, but with total hearing loss, and 6 weeks of total facial paralysis. The paralysis has improved greatly, but vestibular function remains a major problem.
SO, it takes major concentration on my part to keep my balance, hear, remember things, read things much more complicated than the newspaper, and when I get tired I "can't find my words". Immediately after the surgery the first thing I noticed was that I couldn't add and subtract in my head anymore. When I returned to work I found myself unable to "keep all eight balls juggled in the air" like I used to do, even though I'd go home and go directly to bed for the rest of the day. After two years I finally had to give up my career of thirty years and take early retirement despite my best efforts. Since my retirement I have been able to spend more time on my medical care and have found out a few things that were not provided by my AN Physicians:
1) See a Neuropsychologist.
Your symptoms can actually be measured, documented, and treated. Treatment can consist of many modalities, including occupaional therapy, or medical treatment (I was started on one of the alzeimers drugs by a neurologist, which made a tremendous difference). Measuring and documenting your symptoms is important, not just for your sanity, but also because it can qualify you for eligibility for Social Security Disibility if needed.
2) See a Neurologist (Not a Neurosurgeon).
When I referred myself to a Brain Tumor Center neurologist, my evaluation revealed that I was having seizures. The kind I was having are called simple- partial seizures, which caused me to have tiny twitches of my hands and feet, barely noticeable, usually when I was really tired. But they're there ALL the time according to my EEG testing, and enough to cause memory problems and fatigue. Perhaps the seizues were from the long surgery or retraction of the brain tissue. But treatment made a big difference in my memory and attention difficulties.
3) Deal with your Hearing loss
I know this is easier said than done. But, if at all possible, and at ANY cost, if you are a high functioning, active working person, who is out there in the world with people every day, if you have completely lost hearing, consider getting a BAHA. Helen Keller said that to lose sight was to lose touch with THINGS, but that to lose hearing was to lose touch with PEOPLE. The most common coping skill used for dealing with hearing loss is social isolation. And I believe one of the biggest causes of the fatigue after AN treatment is just the effort it takes in trying to hear. And you can feel exhaustion and depression when you begin to lose contact with friends, family and coworkers due to your hearing loss.
4) For Newly Diagnosed AN's
Know that cognitive dysfunction is by no means a common post treatment problem, but that for some reason, it is not widely known or accepted by some physicians as one. It is important that you seek an AN Physician that offers not only excellent treatment for the tumor, but also for the possible complications that may follow.
