symptom question

[finlayargyle]

Hi everyone

I'm new to the board and currently awaiting an MRI to rule out AN.

I've had high pitched tinnitus in my left ear for nearly a year which has got louder and had episodes where it gets very loud for a few seconds but still only in one ear.

I've been treated for headaches for best part of 2 years. Other possible symptoms include 'Spaced out' feeling, not quite vertigo,  slight off balanced feeling and sometimes feeling car is still moving when I've parked.

Could I ask what we're your symptoms before being diagnosed?

Thank you

[Susan59]

Hi,
I had all of your symptoms plus hearing loss on my AN side. I joined this forum months ago but have never posted before. When I was diagnosed last summer I started reading and researching everything on this forum. It is a wealth of information.

This forum helped me make my treatment choice so I feel like I should start giving back to the forum and posting now.  Maybe I can help someone a little bit.  Having said all that, I hope you don't have to join this "club", but if you do, you are at the right place to get a lot of good advice.   Susan 

[ANGuy]

Your symptoms could very well be an AN, or they could be something else.  My advice to is to just be patient and wait out the time for your MRI.

Sorry, I posted this by accident before I was finished writing my response, sorry if the abbreviated part in the beginning came across as rude.

The results of your MRI should be very quickly available to you, maybe that day or the next, so the wait won't be too nerve-racking.  Also, ask for a copy of your MRI before you leave the scanning facility.  It is a lot easier to get it then than to make a trip back to get it.

I'm sorry you are having symptoms that require an MRI.  It is indeed nerve-racking. 

[CMC]

Hi! I have been aware of my AN for 5 years incidentally found on MRI when I was having vision problems. Although my tumor hasnt changed in size, my symptoms have increased. It really hard to explain to a doctor and I too am curious about the symptoms of others.

To answer your question, my first symptom was blurred vision in my right eye that was diagnosed atipical occular migraine. My eye blurs blind and pupil gets misshapen with pulsations that last about a minute. 5yrs ago this happened once a month. Even tough this happens several times day now, my nuerotologist tells me it has nothing to do with the AN. As for relatable symptoms, in beginning, I had a sound in my head that resembles a fax machine particularly in times of stress. I had a coiple dizzy spells but nothing major. Evetually the sound on my AN side turned into a constant higb pitch ringjng and slight decreased hearing. Now the ringing is so loud it I can feel it. I have a spacey feeling in my head too and affects my concentration and I believe my memory. Its hard to sleep or contrate. Causes me great amount of fatigue because I never have peace. As far as the spacy feeling the only way I can describe it is to imagine the strings of a guitar. That fast vibration of the string is what me eyes see. Not quite spinning but but I can hear and feel thst sound on that side of my head. By the end of the dsy I cant see straight,  and see double sometimes. It is exhasting. Anxiety and mild depression has also been an issue. I think my eyes are working hard to keep me balaced.

I am now on a 2yr plan for MRI but I dont think I will make it that long because the symptoms are getting worse. Some days are better than others but always present. If the time comes I have chosen surgery, but I am not in a hurry

Good luck I hope you have a better explanation for your symptoms!

 I want this tumor out but im not ready to lose the hearing I have which is pretty good.
The hard part about watching and waiting is knowing when it is tme to tske these newer problems seriously.  Its always there reminding me its there.

[michelej]

Mine started out with unsteadiness, feeling like I was in a fog, a high pitched ringing in the one ear and hearing loss. I never ever had a headache. I could not have walked a straight line for a sobriety test if I tried. Was told I had reflux (yes believe it or not). Messed with that doctor for several months. Went to another, ordered an MRI. Said it was negative. Ok.. thought I am just crazy even though my hearing is getting worse. I am getting older. Finally hearing was alot worse and I was still off balance etc. Got another opinion, several years later. Got another MRI and there it was.. the AN. It was determined when I saw my new ENT that it was there before. ... Not very happy about that. Got the surgery, balance is better now. Have the implant for the BAHA and will get that next week. My face is pretty much ok.. Deaf in one ear obviously now. Good luck!

[Kat From Indiana]

I had all your symptoms and also a feeling of fullness in my AN ear.  I felt like I needed to pop my ear but never could.  I have a lot of headaches but not sure if they are related to my AN as I have always suffered from headaches.  I finally requested a MRI which revealed a Right sided AN.  I am sorry you are experiencing symptoms and I hope you don't find that you have a AN. But if you do, you will find so much good info here and lots of seasoned warriors who can help you along.  Best wishes.  Please update when you get information.

[finlayargyle]

Thank you all for replying. Still awaiting mri but symptoms are all the same.

[Angie UK]

Hi Finlayargyle, are you in the US or UK? 

[finlayargyle]

In the UK. I'm still no further forward with a date for MRI. Tinnitus is as bad as ever, still only in left ear but thankfully haven't had as many dizzy spells. I'm taking that as a good thing!

[ANGuy]

What's the hold-up with the MRI? 

[Angie UK]

I thought you might be from the UK, (I recognise the MRI scenario!)   Sadly, although most NHS services are free, they are also painfully sloooooooooow....  its not unusual for an MRI to take months to come through, then more months waiting for the results I'm afraid. I was quite quick in AN terms (I am a member of British Acoustic Neuroma Association - BANA in the UK, and the forum there has lots of stories of the length of time people wait)  I was symptomatic, MRI'd, and diagnosed within 5 months, that's quite rare I gather.  All down to a vigilant GP who wasn't happy with my symptoms...

Although experiences broadly follow a similar pattern, medical services vary considerably between US & UK.  You may find it beneficial to join BANA, if you do subsequently find out you have an AN,  (it does cost, but only £18 a year, plus you get on to the UK forum, & can usually "speak" to others who are under the same consultants etc as you may be - very reassuring.)  The UK forum has UK specific information.

In the meantime, in the best possible way, hope you don't have to join our club!  Very best wishes.

[ANGuy]

I'm sorry that the wait has to be so long.

[darkorchid12]

So does anyone just fall apart?  I must admit yesterday I hit some sort of wall emotionally.  Trying to take in the awareness of having the an, and also trying to sort out what to do next got to me, crying, then migraining because I cried is just exhausting me  The decisions that need to be made and possible results scare me.  So any suggestions? meditation, yoga, etc?

I think all of you out there that have gone through and are going through this process are truly heroes.  I hope a little rubs off on me!

Best to you all.

[CHD63]

Hi debbisholes .....

It is perfectly normal to have emotional reactions to learning you have an AN.

I was alone at the doctor's visit when he told me I had an AN.  My brain just shut down.  I know I asked him questions, but I have no idea what questions nor the answers.  I only remember leaving his office with a piece of paper giving phone numbers for specialists.  I made it to my car before I broke down and sobbed ..... not knowing what my future might hold.  When I had regained my composure, I called my husband at work and told him so someone else could share my anguish.  As they say ..... the rest is history.

That being said, you are on the right track to look into meditation, prayer, yoga, etc. as a means of refocusing your energies ..... away from what is facing you ..... to directing your anxiety to productive use.

To this day, I practice yoga nidra when I can feel the tension rising again.  (I bought a yoga nidra CD as a guided program.  It takes about 20 minutes to do on the CD.) Plus, I believe strongly in the power of prayer.

Many thoughts and prayers.  Clarice

[ANGuy]

I think all of you out there that have gone through and are going through this process are truly heroes.  I hope a little rubs off on me!

Best to you all.

You answered your own question.  Look to others who have been through tragedy and triumphed.  Find your inspiration in AN patients, war Heroes, "regular people" who have performed extraordinary acts, there are all kinds of Heroes in this world.  They can be any age, gender, economic background.  You can find someone just like you, or completely different than you.  You can meet them in person, you can read books about them, you can watch interviews of them online.  This is what I have done long before I got my AN and I hope some of it HAS rubbed off on me.  I connect Faith with these people as I believe they are concrete evidence for us to witness as proof of God's presence in our lives.

And the yoga and other tips from Clarice and others, those too!  If it works for her, and you admire her courage as we do, then follow her tips as well.  That's what is so great about advice like this, you don't have to decide between them, you can do all of them.