new dx but symptoms may not match

[texas]

Hi
   I am new to posting (& bulletin boards) and just received the AN diagnosis from MRI last week.  However, I have internal muscle tremors (not visible on my body) mostly in my hands and arms, sometime legs.  They feel like your muscles do when you've over exercised.  I can't find that this symptom is listed for AN so it would be helpful if anyone knows about this?  My other symptoms are nausea and dizzy that are controlled with the sea sickness patch, no hearling loss or other of the symptoms listed.  Any information appreciated as I don't want to make a treatment decision if this symptom won't go away.  Many thanks, Joy

[iluuvpups]

Hi, Joy.  Welcome to the forum.  I'm sorry to hear about your diagnosis, but glad you found this supportive community.

I have tremors in my right hand that are visible, but i was told they were not from my tumor.  I had another MRI to rule out MS and luckily that turned out to be negative.  So I still don't know what they're from.  I don't know if your tremors are from your tumor as I haven't heard of that being a symptom.  Sorry I can't offer more help.

--Carol Ann

[msmaggie]

Hi TX,
Welcome to our little corner of the world, but sorry for your diagnosis.  The nausea and dizziness are probably par for the course, but I'm not sure about the muscle symptoms.  Maybe someone on the forum can address that.  There's a wide variety of situations, symptoms, and issues presented on a regular basis.  There are also a lot of wise and wonderful people who respond to what is presented. Are you in TX or just a Texan at heart? I, and several others, are in Houston.

Priscilla

[CHD63]

Hi Joy and welcome to this forum.  Sorry you had to find us by way of an AN diagnosis, but glad you did find us.  This is a supportive, caring group who will walk with you on this journey ..... sharing what we can from our own personal experiences.

You did not say if these internal tremors came on at the same time as the nausea and dizziness.  If so, I am presuming you have shared this symptom information with your doctors, as well.  Depending upon exactly where your AN is growing, many different symptoms can present themselves.

I personally did not have this symptom of internal muscle tremors, although initially I had very strange, almost surreal, feelings internally.  My doctors (and I) attributed it to the stress and anxiety after diagnosis, but before treatment.  After surgery, I no longer had those feelings.

You should definitely tell your doctor(s) about all of your symptoms to determine any connection to the AN.

What is the size of your AN and where does the MRI report say it is located (in the canal, outside the canal, near the brainstem, etc.)?  How long have you had symptoms?

Ask away with any more questions and let us know how you are doing.

Clarice

[leapyrtwins]

Hi, Joy and welcome to the Forum.

The symptom you mention is a new one to me; I have never heard of it before in relation to someone diagnosed with an acoustic neuroma.

As Clarice said, you should definitely mention it to your doctor. 

I highly recommend you contact the ANA and ask them to send you their informational brochures.  You'll find them very helpful as you continue your AN Journey.  They are written in easy to understand terms and are a great resource.

Jan

[Anomar11]

Texas,

I started having internal tremors about 2 months ago.  At the base of my neck, sometimes into my face and going down my left arm.  I contacted my treating CK MD re: this, who said it likely wasn't related.  I thought maybe somehow brainstem being pressed, or possibly involving lower cranial nerve?  It was pointed out to me that the left side of brain controls rt side of body.  After "googling" this I stumbled upon a menopause forum and there were many, many women describing this very thing.  I was amazed, as I didn't know this could be a symptom of menopause.  I'm definitely going through this stage, so I'm attributing it to that.  Many women said they've been to several doctors, had many diagnostic tests/imaging and they could find nothing.  I was worried about other diagnoses (MS etc) but figure I've had many doctors looking at 5 MRI's over the past 2 years who haven't found anything.  It happens more when I'm at rest (going to bed and when I wake up I notice it too.  I don't notice it much while up and about unless it's at the end of the day and I'm quite tired.  It's like a low level vibration.  It's just too much of a coincidence that so very many perimenopausal/menopausal women describte this very thing.  As several on this board have stated, we tend to blame most things on the AN that may not even be related.

[Jim Scott]

Hi, Joy ~

Welcome to the ANA discussion forums.  Unfortunately, I'm not qualified to answer your question about the tremors you experience along with the more typical AN symptoms so I'll agree with the previous posters and suggest you refer this question to your physician, who, I trust, will be able to explain it. Could we have a bit more information as to the size and location of your AN?  Thanks.

Jim 

[texas]

Hello again and please tell me if this isn't the proper way to reply to all of your very supportive posts as I just hit the reply button.
   My internal muscle tremors were the 1st symptom, then later the nausea and vertigo so I thought I had the flu.  Fortunately my MD did 2 MRI after all my usual blood tests were normal after 2 months and the symptoms remained.  I guess now I'm waiting for a referral to a neurologist, not sure as my MD has been out of town for the holiday.
   I have a tiny AN, round 5mm, adjacent to the right cerebellopontine angle at the origin of the 5th, 7th & 8th nerve bundle. All else looks normal in the brain and inner ear canal MRIs.  Since a lady never tells her age, I will say I am past menopause but any and all ideas appreciated, I wish that had been it. 
    Born in San Antonio, living in Palm Springs, CA area now, sorry not to be near those of you in Houston.  Again so many heartfelt thanks for your caring. 
     Joy

[leapyrtwins]

Joy -

your AN is considered small, which means that radiation and surgery should both be treatment options for you.  Watching & waiting is also an option.

As I said earlier, ask the ANA for their informational brochures - they'll be very helpful.

I'm not sure where Palm Springs, CA is in relation to Stanford, but Dr. Chang @ Stanford does great things with radiation.  He's got a wonderful reputation and I'd recommend consulting with him.

If you think surgery might be for you, you might want to consult with a doctor at House Ear Institute (HEI) in Los Angeles.

Jan

[CHD63]

Joy .....

Thanks for telling us more about your situation.  I am not a doctor, but it sounds like your tumor is closer to the brainstem.  If that is the case, it may explain your internal tremors if it is beginning to press on several nerve connections at the same time.  5mm is very small but so is that area of the brain.

16 years ago I had severe attacks of trigeminal neuralgia, caused from an artery and two veins pressing on the 5th cranial nerve at the brainstem.  It was ultimately relieved with microvascular decompression through entry into the skull via retrosigmoid approach ..... same approach as my AN surgery 2 1/2 years ago, but on the opposite side.  I know from my reading and research for the trigeminal neuralgia that pressure on the nerves at the brainstem can cause a myriad of different symptoms.

I would definitely discuss all of this further with your doctor.  As Jan mentioned House Ear Institute is close to you and they will give a free opinion of your situation, if you mail them a copy of your MRI CD.  I believe Dr. Chang at Stanford will do this also.  I would strongly urge you to get additional opinions even if you decide to stay with your original contact.  I think everyone on this forum will agree that treating an AN is one time you want the most experienced medical personnel you can find ..... I mean in terms of how many ANs they have successfully treated.

Thinking about you and let us know how you are doing.

Clarice

[texas]

Hi,
   I didn't know that about the House Institute reviewing the MRI, I am definitely going to check it out.  Since my symptoms make it a challenge to work and have qualit of life, the watch and wait isn't an option.  However I have to be certain that the muscle tremors are caused by the AN before I get treatment.  Thanks for the idea that it might be the area of the brain where the AN is located.
   Our Palm Springs area often doesn't have the variety of MD specialists, so I think I have some battles ahead with insurance, etc. but it's one step at a time.  Wow, I am so impressed with what I have learned in 2 days on the bulletin board.  Bouquets of thanks to you,
    Joy

[texas]

PS:  Has anyone had problems with their MRI being read incorrectly?   My 2nd MRI had incorrect information as it said Left neurosensory hearing loss under History, but I don't have hearing loss and never said it was a symptom.  I called the imaging center and they said they would give the information back to to the radiologist, so I'm waiting for an updated one, but it makes me suspicious of the total MRI information.  What do you think or am I being too cautious?   
    Joy

[Jim Scott]

PS:  Has anyone had problems with their MRI being read incorrectly?   My 2nd MRI had incorrect information as it said Left neurosensory hearing loss under History, but I don't have hearing loss and never said it was a symptom.  I called the imaging center and they said they would give the information back to to the radiologist, so I'm waiting for an updated one, but it makes me suspicious of the total MRI information.  What do you think or am I being too cautious?

No.  Although MRI scans are usually read correctly, yours contained some incorrect medical history information.  You corrected it, as you should have.  Very small ANs may be a bit harder to see but the Radiologist, who is familiar with MRI scans, should be able to spot it if he/she is thorough, which they usually are. 

Jim

[leapyrtwins]

I'm sure that on occasion MRIs are read incorrectly.  Radiologists are only human, and anyone can make a mistake.

However, an acoustic neuroma is usually pretty evident on an MRI - especially one done with contrast (gadolinium).

Jan

[Helsy]

Hi

I am waiting an MRI for hearing loss and tinnitis so still yet to be confirmed whether i have AN, however interestingly, i have experienced the same sort of symptoms in my legs. It feels like a vibration under the skin? Only happened about 6 weeks ago for the first time.

Helen