Cognitive Issues...

[Trippy]

Hi All,

Ever since my recent bout of vertigo and now change in sense of balance I've noticed that I'm having difficulty thinking.  My short term memory is shot, I can barely concentrate, let alone multitask, which is essential to my job.  Apparently this is due to damage to the vestibular system (tumor compressing the balance nerve) and from my understanding I doubt I will regain this.

I'm becoming extremely worried about my ability to function in the world.  I'm only 30 and I don't come from a family that's exactly financially comfortable.  I always felt that I would be able to take care of my parents but now it seems the tables may have to be turned and I am scared to death of whatever hardship I may incur on my friends and family.  I don't know what to do...

[nftwoed]

Hello;
   You're not alone here and likely will be able to do what you need to do unless you should contract Alzheimers or dementia ( both not related to AN )
   I have 0% peripheral balance function, cannot multitask, and have a short term memory loss, but believe I could function at many jobs if it weren't for being deaf and having such poor balance ( part, due to a secondary effect of NF-2 ), autonomic neuropathy which began as peripheral neuropathy.
   Yes; Cognitive dysfunction is frustrating and embarrassing at times, but I've never read of a person so disabled with this and AN, they were unable to function and carry out necessary tasks of daily living.
   One thing at a time, OK? Then move onto the next. If you can't recall a name, number, event, etc., give it a few minutes and focus your attention elsewhere. I believe the temporary loss of memory will come to you eventually.
   Best wishes with this. Lose something? Let it be for a while. Just try to remain calm.

[stuartl]

Hi foolthrottle,

I have some of the same concerns that you do regarding family, help, and dependence. I don't want my parents to help me with the massive bills that are coming, but I'll need help from them, unfortunately. I don't want them to have to take care of me after I recuperate and begin figuring out how things work post-surgery, but they want to. They don't look at me as a burden, and given what you write (with love and concern for your parents), I'm guessing your parents will want to support you, too.

I've never had to deal with the cognitive challenges that may come with the territory after surgery, but I have a feeling (hope?) that there are a few  workarounds and ways that I can pace myself to get the kind of "performance" I want when thinking and doing. I'm hoping you'll find the same, once you've had more time to live with and understand what you are dealing with.

Any time bad news like this comes up, I always want to know not only the lay of the land but how the story ends—how to somehow make it right. I've been running scenarios in my head about being deaf, having to figure out how to get money earned through other means than what I've done in the past, what a relationship would be like in this new context (I'm unmarried), what I can do for my parents, what the world will feel like, how I'll care for my sweet cat if I can't hear her… It's all speculation. I will have to slow down and see how things work out. Of course, I'm also really bad at that.

[Petrone]

Foolthrottle, 

You're very young and I'm sure your age makes an AN dx that much harder to come to terms with, but you're also way to young to let this defeat you!  You're a fighter, right?   So fight back!  Train harder.  Eat a better diet.  Get more rest.  I am 20 years older than you and when I got my AN dx almost 4 years ago I vowed to not let this ruin my life.  Believe it or not, in some ways I consider my AN dx a blessing because it caused me to appreciate my life, my family, my work, vacations, good times, bad times... everything, that much more.  I'd also bet that every single person on this forum knows someone, a relative, a friend, a co-worker, who has been afflicted with something far worse than what we struggle with -  cancer, autism, epilepsy, etc.   

I hope I'm not coming off too preachy, but you're too young to give up.  Speaking of not giving up, if you've never seen Jimmy V's ESPN speech shortly before he died of cancer, this might give you some inspiration.  Don't ever give up!   

http://www.youtube.com/watch?v=HuoVM9nm42E.

 

[PaulW]

Hi Foolthrottle,
Sorry to hear about your symptoms.
3 Years ago I was in the same boat, I just couldn't think, my concentration was terrible.
What you are describing is not unusual.
The good news for me is that I have returned to normal, and I can concentrate again.

Balance problems seem to improve over time for most people.
Remaining active, and challenging your balance system does seem to help.
I did a lot of walking and it helped a lot when I did it. Although it did make me feel pretty awful straight afterward.

[Trippy]

Thanks everyone for the words of encouragement they really do help. 

I'm still quite concerned over some changes in my condition though... I had an MRI in early June revealing a 3mm tumor on my right ear.  Symptom was sudden hearing loss and loud tinnitus.  Was put on medrol and my hearing came back thankfully and was left with some light tinnitus...I was happy and was satisfied with doing W&W.  I didn't think much of my condition.

Then a month later my right ear goes off again, sudden hearing loss and loud tinnitus.  My hearing comes back on its own but the baseline tinnitus comes back louder.

Then another month later I experience some vertigo.. my tinnitus gets loud again that night.  Tinnitus improves later but I'm left with dizziness and my sense of balance seems really weird.  My left ear also starts to have noticeable tinnitus now.  It seems like I fall to the left...could this mean theres a tumor on the other side?

[nftwoed]

Hi, foolthrottle;

   I believe the stats are about 6% for those with 1 AN go on to develop a contralateral AN ( NF-2 ).
   The odds are decidedly in your favor against that.
   Seems to me sometimes tinnitus is hard to locate as to origin and is generally related to a hearing loss, even mild. Notice any hearing loss on the left?
   If you had true vertigo ( ANs usually present with dizziness ), you might not have noticed hearing loss on the left. So; Best to have this checked out. Really true vertigo ( it's immistakable! ) could suggest another AN due to uncompensated vestibular loss.

[Trippy]

The vertigo I experienced (or what I beleive to be vertigo) was a quick episode of me feeling like i was falling backward.  It was so weird.  I haven't noticed any hearing loss on the opposite side 

[nftwoed]

Hello;
   Your sensation was dizziness. I sometimes refer to the episodes of dizziness as "vestibular hallucinations". True vertigo is pretty much incapacitating; Sometimes, completely so. Great news about not being aware of a hearing loss!  : )
   foolthrottle, you mentioned maybe having tinnitus the left side. If you're absolutely sure and it becomes constant, it would be good to have an audiogram, or, ask Dr. about this.
   I can't seem to locate when your last MRI was?

[Trippy]

By falling back I meant that everything looked like it rotated upward for a moment.  Wouldn't that be vertigo?

[nftwoed]

Hello;
   I believe dizziness, as vertigo is rotational and generally incapacitating or enough a person vomits. A Dr. might ask: " Do you feel you are spinning, or that the room is spinning?"

[Trippy]

I just started noticing a weird slight burnt feeling on the right side (AN side) of my tongue... This is so discouraging... it has only been 2 months since the diagnosis of my "small" tumor.

[Nannybee]

In terms of your symptoms, you feel what you feel. The sensations are difficult to put into words. I have seen people on this board call it wonky head and that's about the best description I have for the feelings i experience!

Your challenges with multitasking and concentration may be related to the brain now being occupied with tasks that were once automatic such as hearing and keeping your body upright. Tinnitus is very distracting and difficult, if not impossible to measure because it is purely subjective.

I have had some benefit from vestibular therapy. You may consider seeing a certified vestibular therapist for an evaluation and treatment program. They will give you exercises to challenge your vestibular system and hopefully learn to adapt to the balance issues.

Best of luck to you.