Pre-Treatment Symptons

[kfraone]

Hello all,

I am newly diagnosed with a 1.5 possible acoustic neuroma on wait and watch.  It is my understanding that this is small and possibly a menengioma as it it odd shaped. I am going to get a second opnion as well.   The neuroma was an incidental finding when an MRI was ordered to help rule out things like Parkinson's and an eeg to rule out epilepsy because of the shakiness that I have been feeling for months now as well as family history. The eeg is considered abnormal, not indicating epilepsy,but no explanation of why.  I have had a very thorough exam with a multitude of test to rule out most metabolic issues.  I am told I am healthy. I have very slight hearing loss in the affected ear and some balance issues but not enough to concern the neuro otologist.  My question is about symptoms that I am not sure are related and thought I would ask if anyone can say they experienced any of these before they were diagnosed;

1). Challenges with work that I could always research and solve seem more illusive.  Loss of words.

2). Shakiness or what I refer to as a caffeine high (without the caffeine) that sent me to the doctor in the first place.

3). A pulsating and sometime tingling feeling in my head intermittently.

I appreciate your experience and insights.

[ppearl214]

Hi and welcome.

None of us are doctors (and no, I certainly did not sleep at a Holiday Inn Express last night) but difficult to say, in my opinion.  What you describe, also noted by your doctor, can be due to diffferent causes so certainly can't say. There are definate differences between acoustic/vestibular neuromas (benign growth on VIII cranial nerve complex -- hearing/balance) and meningiomas (type of tumor that develops from the meninges, the membrane that surrounds the brain and spinal cord).  In both cases, most are benign and easily treatable either with surgery or radiation once its determined that treatment is required.

The symptoms you are noting are not typical with AN's (although can't be 100% ruled out as some may report these, many time post-treatment).

2nd opinion is definately worth pursuing (as well as 3rd and 4th, if you feel necessary).  It's your body, not the doctors, so do what you feel is best for you.  You do not note where you are located but there are many here from all over (I'm in metro Boston) that can note our experiences with wonderful neurosurgeons from all over.

Not sure if any of this helped.  I've only had 1 cup of coffee so far for 5:45am

Phyl

[kfraone]

Phyl,

Thanks so much for responding.  It all helps right now.  I really didn't think this was a big deal until the last couple of days.  I just thought I would deal with it when it needed attention, but,with this shakiness and loss of concentration on my work, I really am feeling overwhelmed.

I too wonder if this is not acoustic but meningioma.  I am trying to get another neuro consult as well.

Glad to hear yours has been taken care of.

Kay

[Jim Scott]

Hello, Kay ~

I want to welcome you - and echo Phyl's opinion that you consider getting further medical (neurosurgeon) opinions - as many as needed - to help determine whether you have an acoustic neuroma or something else that is causing your symptoms.  Please try to let us know if and when you find a definitive answer.  Thanks.

Jim   

[mindyandy]

My symptoms were loss of taste on r-side of tongue. It was weird. My balance has always been bad. 

[kfraone]

Thanks, I am working on referrals for second opionions and a neurologist that can communicate with the patient.  I will keep the community advised.

Thanks!

Kay

[Kathleen Ann]

Hello!

I was recently diagnosed with a 2cm acustic neuroma and will be having surgery in Feb. I have that constant caffeine jittery, restless thing also and it seems like my mind just doesn't work as fast as it used to? If I don't write things down when I think them I can't grasp it again? For me it's hard to tell what's tumor related and what's just good ole plain stress.

[PaulW]

"it seems like my mind just doesn't work as fast as it used to? If I don't write things down when I think them I can't grasp it again?"

I had a number of cognitive problems as a symptom too. Speaking, short term memory and typing were more difficult in particular.
This has all get better now
 
When our vestibular system is compromised by the AN things do happen.

Please read the link below

http://www.vestibular.org/vestibular-disorders/symptoms.php

Cognitive

■Difficulty concentrating and paying attention; easily distracted (free publication)
■Forgetfulness and short-term memory lapses
■Confusion, disorientation, difficulty comprehending directions or instructions
■Difficulty following speakers in conversations, meetings, etc., especially when there is background noise or movement
■Mental and/or physical fatigue out of proportion to activity             

[chance1212]

I really appreciate this post. I was diagnosed with an AN that is less than a cm. I have been struggling to try to describe that feeling, but the jittery caffeine without any coffee is how I feel. After being diagnosed in July 2011, I have along with this constant jittery feeling lost the rest of the hearing in my left ear, developed vertigo, and the ringing has gotten so loud it interferes with my thought process at times. I originally had trouble with a stuffy ear feeling back at the beginning of 2011. I currently on watch and wait, but if I could alleviate some of the ringing, stuffiness, jitteriness, vertigo, etc. I will do surgery even though mine is really really small. I feel like such a hypochondriac. Never have dealt with health issues prior to this. Part of my frustration is also with the lack of data (nobody's fault-there just isn't much) about what symptoms can be helped with the GammaKnife or surgery. Is is worth the chance?
Again it is so nice to know I am not the only one with these issues. Sometime the doctors shrug things off like well that's not the AN. Well I didn't complain about these things prior to 2011.
A Bit Frustrated 

[james e]

I have tried to explain to my wife how this surgery has changed my ability to think and act. I am still wonky 24/7, 22 months after surgery. I depend on my eyes for most of my balancing. It just wears me out some days. It takes a lot of concentration to walk straight.  I have told my wife it is like talking on the phone while driving...you just did not see that stop sign or that school bus stop. Your brain is doing something else besides driving. Balancing yourself is just as distracting.

Last week, my wife wanted to learn how to shoot my AR15 rifle. She has never fired a gun or rifle. We went to the range and set up a target and she started shooting using a gun-sight...she is a really good shooter. After about 30 rounds, she said she was worn out by the amount of concentration it took to line up the sight, relax the breathing, correct trigger pull, etc. I used this as an analogy of how I get worn out so quickly some days. Concentrating to stay vertical, walk straight, not fall over, distracts me from listening, talking, thinking, and just being a relaxed human being. Imagine how worn out you would be if you had to concentrate like that all day long.

Not complaining. My life is just different now. I accept the difference. I always have to remind my wife and friends that I am a little bit different now. They cannot SEE what is going on in my head. They always tell me I look and act normally, but my head is always going 100 mph just to stay vertical. It really can wear you out.

James

[New girl]

Hi Chance1212 - My tinnitus used to get really loud.  I cut caffiene out of my diet and that helped keep it at a lower volume. This may not work for everyone but it may be worth a try.  I used to drink 1 cup everyday so it was a difficult change but it really helped the tinnitus.  Now I drink herbal tea.  Sorry you are going through all of this.  Best wishes.