Cognitive and Emotional Problems
after Acoustic Neuroma Surgery
(indented text by AN patients)
Short-term memory problems, difficuly concentrating, a sense of confusion and frustration, increased intolerance and anti-social tendencies, language difficulties, decrease in IQ, depression... These are the complications of AN surgery that fall under the category of "cognitive and emotional problems".
Many of us, after surgery, complain of fatigue and memory problems. According to our surgeons, that SHOULD not be a problem... Nonetheless, after talking to others in my support group, I realized I wasn't crazy, this was a legitimate complaint that ALL of us experienced... My surgeon has finally come to grips with this phenomenon and just agrees that somethimg must happen to cause the fatigue and memory problems... At least he now acknowledges these problems... This demonstrates the importance of patients sharing their experiences to help everyone else realize they're not alone and they're not crazy to be complaining about something their doctor will dismiss!
Though we usually do not hear about these complications from our doctors, and we sometimes hope that our cognitive problems are just imagined, neuropsychological tests can be used for a definite diagnosis, when performed before and after surgery:
Those who treated me told me that I would probably experience short term memory problems. That was verified during countless neuropsychological tests. My short term memory loss was evaluated at a 10% loss.
After my AN surgery, I endured many tests, some of which were neuropsychological tests. The bottom line result was that I had lost a significant % of IQ and at least 10% of of my short term memory. That helped me to understand why I couldn't remember so many thing such as prior to discovery of the AN... I've had to change my lifestyle and profession.
Together with other "non-physical" problems (such as fatigue, headaches and balance problems), cognitive and emotional problems can affect the qualify of our life (QOL) post-treatment more profoundly than the factors we are told about: one-sided hearing loss and facial paralysis. These QOL factors are often the real reason why AN surgery can be such a life altering experience: inability to keep one's job, inability to maintain one's social life, and a decrease in the ability to enjoy life in general.
In some cases, the problems are temporary, and are due to the anaesthesia rather than the surgery itself:
ALL of the health professionals I came in contact with before and after my surgery warned me that the effects of the anaesthesia could be similar to a loss in IQ, but that over the course of six months to a year this loss should be reversed. One of the people I correspond with is an orthopedic surgeon; he said once that he hated long surgeries because of how the anaesthesia dumbed down his patients. His words, not mine!
But unfortunately, not all the effects are temporary. The latest ANA survey documents long-term cognitive and emotional problems. In our Patient directory, there are two stories from men whose cognitive difficulties after surgery had a particularly severe impact on their life: Melvyn and Simon. Simon's story includes moving letters he wrote to his doctors and to his company's CEO to let them understand his situation.
Here are some more stories from patients with cognitive difficulties.
I noticed a distinct loss of the ability to concentrate.
Due to the surgery to open the area up in order for the tumor to grow, I can't remember things like I used to before the surgery. I had a photographic memory back before the AN... now I feel fortunate that I can remember where to look up things... forget remembering phone numbers or things like that.
After my second surgery, I am left with ... slight cognitive difficulties. As far as short term memory loss, I write everything down, which helps me to remember. I am confused and have a harder time concentrating than before. I have become very anti-social a lot of the time and have terrible mood swings.
Visual information processing can be impaired by surgery. This is a cognitive impairment which results in balance problems and in fatigue, usually treatable by vestibular therapy. Note that balance problems can also be caused by non-cognitive sources, such as muscle coordination; difference exercises are beneficial in the two cases.
For many surgery patients, frustration and intolerance go together when they describe their emotional problems:
... I feel strongly about the degradation in my ability to bear up under frustration (i.e., I get frustrated more quickly and my tolerance is down). I suspect that the dual problems of severe tinnitus (a byproduct of the surgery -- it had been moderate to severe prior to the surgery) and the one-sided deafness may be contributing to my intolerance by creating constant sensory stress (both too much and not enough input!).
I would say that there was an increase in frustration and general intolerance - it was always towards what I viewed as willful stupidity.
My frustration and intolerance for alot of things and people that did not bother me before is extremely low now....
Language difficulties as a result of surgery-related brain trauma are also possible:
My language difficulty was that after surgery I began dropping articles in my speech, talking in a kind of pidgin English. Instead of saying "the boy has the ball", I would say "boy has ball". Same meaning but Less effort. During my recovery I just had everyone who came to visit correct my language and eventually I got over it.
I had surgery 3 years ago and I notice occasionally that my speech comes out differently than I had planned and I have to make a quick correction. Since I talk a lot for a living I have been very aware of these happenings... I had translabyrinth procedure.
...I had written a rather long e-mail to a friend and realized that I hadn't used the word "I" and very few articles, e.g. Went to store. Found sweater was looking for. Bought it., etc. Very weird... I'm still having a bit of a problem with it, at least when I'm speaking. It's easier to put more thought into (or edit!) the written word... I hope that I'll be able to speak normally again one day.
Cognitive therapy offers hope of rehabilitation for patients with long-term cognitive problems after AN surgery. Neuropsychological tests are useful for cognitive therapy, to help in planning:
I have not started my cognitive therapy yet... I just had an EEG done and am going to a Neurooptamologist in 2 weeks for some testing that will all be input to the cognitive therapy (along with all the Neuropsychological tests).
Support from family and friends is crucial for patients with these problems, though there is often a lack of understanding that holds back this support. Many patients find that their family and friends do not appreciate their cognitive and emotional difficulties, because they are not obvious and hard to measure:
I thought [the AN surgery] was the most awful thing I have ever gone thru. Still do not feel right. I know I have lost memory, words don't work right, not to mention the headaches, and fullness in my head... It is hard for my family to understand, they seem to think that now that surgery is over my only problem is not having hearing in my left ear.
I severed a 40yr friendship after my best friend told me to "put it out of your mind and move on"! That's easy for someone to say that doesn't deal with the problem day in and day out. Eye problems... balance problems.... tinnitus.... memory problems... depression... fatigue. Day in and day out. Believe me I am no WIMP
It is important to let your friends and family understand what you are going through, so they can be your advocates in your recovery. Simon's story has a good example of the letters you may want to write. Here is another testimonial:
I went on a "inform your family of your situation" campaign over the last 6 months, since I am losing a lot of control over my emotions and am SO fatigued all the time. I printed the Cognitive Disablities Pages in the AN Archive and gave it to close family members and GUESS WHAT?? They understand now. I thought they didn't care, but they just didn't understand! I am being treated differently... No more calling me a lazy anti social goof up who's given up on life... They see me now as what I am... sick and at times helpless... IT'S AWFUL TO BE IN "HERE" CRYING and PEOPLE SEE YOU AS A DUMB STUPID OUT TO LUNCH CHARACTER WITH A VERY BAD CHARACTER FLAW.
Last Edited: Monday, November 17, 2003