Scared & confused college student

[Emily19]

Hello! I am a college student who had vestibular schwannoma surgery about a year ago when I was 19. I didn't really have a choice on the procedure. The doctors said if I wanted to continue living until next year, it was necessary because of the enormous size, 4.3cm. Uninterested in anything to do with my new found tumor I was not actively involved in any of my medical decisions because I truly just did not care to hear anything about it. I have had all the common symptoms everyone else relates to, and permanent hearing loss in my right ear. But the biggest complication in my life right now is how I am noticing my memory is not as sharp as it once was. I want to return to school, I am a biology major. I am scared and nervous that I won't be able to continue any obstacle I may face in life if my memory is worsening. I am completely terrified. I need some advice and I don't know where to turn.

[Tod]

Emily19, my tumor was about the same size. Surgery was 32 hours long and I was almost 50. It wasn't easy, but I came back to full functionality.  It took awhile to feel normal again, even after taking three months off. it is simply going to take time to recover. It is now 6.5 years post for me and memory is the least of my worries.

It takes time to heal. The body has its own calendar. You will likely also find that the more you stay mentally engaged through reading, writing, and just being involved, that things will improve. Be active, not passive, both mentally and physically.

Tod

[Emily19]

I reread my first post and realized I was not as clear as I should have been. I did have the surgery about 2 weeks after it was found. I'm so amazed, I thought mine was a long procedure but only took about 11 hours at rush university in Chicago. I was out of the hospital 5 days later. I was uninerested in making medical decisions but my whole family got involved and pretty much made them for me because I was so stunned I did not even know how to think of it. I had to drop out of school and take about 3 months off work. That really is amazing to hear all the stories and that memory is the least of your concerns puts my mind a little more at ease. I'm definitely going to take some of the advice I found about reading, paying more attention to concentration, and increasing the amount of fish in my diet. Hopefully that will make a difference (:

[caryawilson]

Sorry.  I mis-interpreted your initial post. 

Now back on point.  My tumor was similar size and 17.5 hour surgery vs. 11 hours.  I also, found my cognitive issues were my largest obstacle (dodged the expected feeding tube).  I was told this was primarily due to the anesthesia used during surgery and can easily last a year.  As for me, I started seeing improvement after 5 months, and went back to work after 7.5 months.    My cognitive ability continued to improve and I noticed a stark improvement after a year compared to 7 months.  However, I think it was important to get back to work to start forcing my brain to work on more complex problems.  I would say this will take a little time for you, but you need to push yourself and I think you will notice significant improvement.

Get back to school as soon as possible.  I don't think you will ever feel 100% comfortable, and it's important to push your limits. Perhaps take an easier load.  Your cognitive ability is like returning to the gym.  Unless you start lifting weights, you won't improve, and when you first start, it will feel difficult.   

[Sheba]

Hi Emily

Sorry you are dealing with such a huge challenge at your young age.  The good news is, your body should be more primed than us older folks to recover.  But the great news is, brains are very "plastic" - they are designed to continue learning and making new connections, as long as new challenges / new experiences are presented.  Even for older adults.

To build sharper attention & memory - I was just reading a Scientific American article last night, about how many video games are great for developing sharper attention and decision-making skills.  I wish the games weren't mostly so violent - there will be some games coming out which have the same cognitive benefits without the gore.  This is an example of one of the newer sites offering brain training without gore - supposed to be more effective design than Luminosity:
http://www.brainhq.com/#    Caveat - I have not tried this myself yet, just read about it last night.  bookmarking it for my post op haha  (Jul 19 surgery coming)

Also there are interesting new books on the topic of how brains continue to develop and grow new connections /recover from injuries and insults like our surgery  -
I just ordered two from Amazon:

The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity (James H. Silberman Book)

The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science

As noted - I am pre-op, and am just loading up on positive things to motivate me  with general brain healing strategies.

Are you doing full vestibular therapy - your brain may be tired / memory poor if you have not had a good strategic approach to vestibular therapy - by strategic I mean, someone trained in VT has evaluated your eye movements, walking, etc. and flagged where you need work.  Til you sort out that stuff, your brain is on overload.

Hope it helps
Sheba

[Sheba]

Hmm emily I had a few more notes that got chopped off of my reply -

here is the rest -

I am pre op and trying to load up on some positive ideas for a full recovery -
I just ordered two books from amazon last night,
these are about how your brain can learn and recover from surgery etc., no matter your age:


The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity (James H. Silberman Book)

The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science

And -
If you have not had good vestibular therapy yet, your brain may be on overload -
you have to have a trained person evaluate your eye movements, walking etc to see if your full eye/balance/positional systems are working efficiently.   There are simple exercises to do, if things are not working smoothly yet.  But you need someone trained to evaluate you and then show you what you need to do to "fix" what's not up to snuff yet.

[mar]

Hello! I am a college student who had vestibular schwannoma surgery about a year ago when I was 19. I didn't really have a choice on the procedure. The doctors said if I wanted to continue living until next year, it was necessary because of the enormous size, 4.3cm. Uninterested in anything to do with my new found tumor I was not actively involved in any of my medical decisions because I truly just did not care to hear anything about it. I have had all the common symptoms everyone else relates to, and permanent hearing loss in my right ear. But the biggest complication in my life right now is how I am noticing my memory is not as sharp as it once was. I want to return to school, I am a biology major. I am scared and nervous that I won't be able to continue any obstacle I may face in life if my memory is worsening. I am completely terrified. I need some advice and I don't know where to turn.

If you are a student at a university or college in America, I highly recommend registering with disability services. You'll need a doctor's note but I'm sure you'll have no trouble getting one. I am about ten years older than you are, but my plans to get a phd were pushed back two years by my acoustic neuroma, which was about the same size as yours. I study chemistry, by the way, so I understand the unique challenges to majoring in the hard sciences. Registering with DSO will give you a chance to have more time on tests or other homework assignments, will give you some leeway if you have trouble getting around campus, and professors are required by federal law to respect it. I have taken tests with disability services, and I have graded tests from disability services. It's a good system at my university and it will most likely be a good system at any school.

If you haven't gone back to school yet, I'd like to recommend that you start with part time course work first. Maybe even one course in something you wanted to take but felt like you didn't have the time? I learned how to program C++ during my break from graduate school. Maybe you could start with something low-stakes and fun.

Even though your brain went through a major trauma, the human brain has tremendous ability to mend itself. I still feel like I'm in a brain fog from day to day. But I'm better off now than I was last year, and in a year I think I'll be better off still. There's no reason to think that you will be the same as you are now. You are so young, and there is so much about your life that will get better.

Good luck. Feel free to PM me if you need to talk.

[PaulW]

Many memory problems with AN have been attributed to a vestibular problems and not problems or damage done to the brain itself. If you can improve your balance your memory issues will improve too.
Definitely check out this website.
www.vestibular.org

http://vestibular.org/sites/default/files/page_files/Documents/Cognitive%20Aspects%20of%20Vestibular%20Disorders.pdf
The best thing I found for balance was lots of walking every day