The Fatigue!

[KristenWS]

Hello Fellow ANAer's - I am almost two months into 1cm left side acoustic neuroma diagnosis. I have been to two specialists and both have agreed that the best plan for me right now is watch and wait with another MRI in six months and to do the best that I can with managing the symptoms (a very light word I would say).  Have been getting a bit better each day since my acute incident (paralyzing vertigo) in June but what I am dealing with now is balance issues, tinnitus and fatigue.  I have 35 % hearing loss in left ear, I am in PT for the balance and have tinnitus I just have to live with but the fatigue is overwhelming. Prior to this diagnosis, I was a real dynamo and super active at work, sports, homemaking, night owl.  Now I do one little task whether it be work or home and I am so wiped out.  Any tips besides napping (type A person, can't really nap) and does it ever get better?

Also, is there any information on why some folks only experience hearing loss and others have balance, fatigue, tinnitus?  When I had my acute incident, it started with the vertigo and the whole world going sideways for three days.  Hearing loss wasn't even an issue or a concern.  I would consider just hearing loss a blessing -- these other "symptoms" are killing me. 

[JD808]

I’m sorry that you’ve joined the club as they say. I’m 7 weeks from the removal of my AN via Translab surgery. I suffered from balance issues as the first symptom for nearly a year. In the last 2 months prior to the surgery they were pretty bad and fatigue became a huge issue for me. My doctor explained that my brain was being exhausted by the faulty input from the vestibular nerve on the AN side. My tumor was within the IAC which is supposedly more challenging for balance. Doc said I would like experience a big improvement post surgery as the bad input would be eliminated. This has proven true. My hearing loss went from about 35% as well to 0% within 4 months so that symptom can go very quickly depending upon your tumor and location. Post surgery, my balance is almost back to “normal” but fatigue is still an issue more so due to the surgery and recovery.

[TotemCarver]

I have a complicated medical history but prior to my diagnosis less than two weeks ago with likely VS I had suffered (and still do) from unexplained chronic fatigue for years. I saw my first VS specialist last Tuesday. He and his resident were very skeptical that the fatigue has anything to with the VS. However, some British health professionals seem to believe quite the opposite (see links belows). It would be great if the health care providers on this side of the pond would pay more attention to this possible VS/AN symptom. I hope the links to the British sites will be helpful.

• UNDERSTANDING AND MANAGING FATIGUE FOLLOWING DIAGNOSIS AND TREATMENT OF ACOUSTIC NEUROMA (VESTIBULAR SCHWANNOMA) by the British Acoustic Neuroma Association
• Fatigue and brain tumours by The Brain Tumour Charity

[tjw620]

I can very much relate to the extreme fatigue! My specialists/surgeons were initially skeptical that my fatigue, vertigo, dizziness/balance issues could be attributed to my 1cm AN. Immediately after my surgery they relayed that my AN was really in the worst possible position on the vestibular nerve, such that my intense symptoms made sense. The good news is, at 8 weeks post-surgery, while I’m still doing PT for balance, the fatigue is so much better.  I started running again at 6 weeks post-surgery. It seems like location of the AN can be just as crucial as the size, but the MRI can’t reveal the location with the level of precision that we might wish.

[jami]

+1 on the fatigue.

At least 6 months before diagnosis of my AN (which was on the vestibular nerve, like tjw620 is experiencing) it was so tough i was ready for bed at 7 each night, and felt my work really suffered. Work and sleep was all I could do. I struggled a lot with no longer being the one who was the top performer / deliverer at work, house wasnt perfect, no energy to see friends/family. Big self esteem issues, as i thought this was just getting old and what made me 'special' was gone -- my identify had to change. Surgery couldn't come fast enough, but it did not fix everything.

I am 3.5 months post surgery and, although I still tire more quickly than i did a few years ago, I no longer feel hungover + exhausted all the time. I still have fatigue while (my opinion) my brain deals with the post-surgery loss of hearing. (still better than before).

Select your top priorities, and let the rest go. Pre-surgery i started going into  the office later so i can exercise in the morning (and hang out with my dog!). I minimize late late conference calls, or group them to one night. And I think "whats the worst case if I dont do xxxx? Its not like it will give me a brain tumor...."  I have held on to a lot of that.

Congrats for balance good news, JD808. Surgery recovery took longer than i expected, was frustrating.
Thx for the links TotemCarver.
AND
Congrats on the recovery tjw620.

[Patti]

Funny that you mention the "hangover" feeling. Fifteen years after my surgery (and many clean MRIs) I noticed I would feel hungover after only one glass of wine. It had me wondering so I decided to tell my neurologist and went for another MRI. I got a call saying that the little bugger grew back! It wasn't in my imagination.  Went for SRS and it has been stable since and the hangover feeling is gone (unless I earned it).

[musicmaker]

I have been recently diagnosed and every week I have experienced a new symptom. Last week it was fatigue. Everyday around 12:00 I have to take a nap.  I've always loved my Sunday afternoon naps but having to nap everyday really interferes with my daily routine.

[texasanimaldoc]

I can relate readily with the fatigue.  I have been an avid runner for years.  I compete in half marathons and do well.  I was diagnosed 3 weeks ago and have increasing levels of fatigue since that time.  Idk if it the realization of the tumor or if the progression is creating fatigue.