Your opinion - does it relate to the AN

[kimbo]

Hi

I had a my 1st post diagnosis MRI in January 2009 with no notable growth and my specialist does not want to see me until Jan 2010.  Recently I have noticed that I have a constant dull ache about the size of my hand behind my AN ear and I get ear aches just like when I was a kid and had an ear infection.  I have also developed super-sensitive hearing (painful) to the point that it is annoying for my family; ring pull aluminum cans, clinking of dinner plates/cutlery and whistling nearly drive me crazy.  My question is, do I make an appointment to see my specialist 4 hours away just to determine if this is AN related and even if it is how does he help reduce the symptoms when I am in W&W mode.  I don't know whether this means the AN is growing, should I be concerned, or is this something that I have to learn to live with.  Has anybody had a similar experience.

 
Kimbo

[CHD63]

Kimbo ....

Since these symptoms seem to be new since January, I would definitely call your specialist to alert him/her about the new developments.  As several of us can tell you, ANs can take rapid growth spurts (although most do not).  Also it could be now growing even slowly but pressing on a different part of the nerve, causing new symptoms.

I can identify with the super-sensitive hearing, although it did not happen for me until after my surgery.  I keep ear protectors (old ones my husband had used when mowing the lawn) handy and put them on when running the blender, putting away dishes, etc. etc.  This does not help with the unexpected noises ..... when I still have the "startle reflex."  As a side note, we are currently babysitting our 2-year-old granddaughter for a couple of weeks, while her parents are away, and she still squeals in delight when excited ..... she is learning that it hurts Grandma's ears!!

Clarice

[Vivian B.]

Hi Kimbo,

I have experienced the same symptoms and some days are very unconfortable. Even before being diagnosed the ear ache and headaches were so severe that they would wake me up at night. I am on watch and wait myself but I was told to go back for another MRI in September 6 months from diagnosis and I had mentioned these symptoms. I actually called the Neurosurgeon's office today about what I can do about the symptoms and spoke to the secretary who could not give me much information but she agreed that iI could speak to my family doctor about it. I would mention it to the Specialiist to just to let him/her know, however, I think that most of us have experienced these symptoms. I even had a rice krispie type of sound very loud for days during a cold and the Neuro said that it was not related to the AN. These growths are sitting in such a delicate area and the hearing system is very vulnerable not to mention all the cranial nerves surrounding the area. Sometimes I think that the AN swells for whatever reason and puts more pressure.  I have plugged my ear when I am in a noisy area, outside or in a mall when my symptoms act up. Even running water leaves an echo in my ear after the fawcett has been shut. Sometimes a decongestant or advil helps, but I am thinking of asking my family doctor for something stronger if symptoms get worse or if they occur more often.  Hang in there.

Vivian

[Tisha]

Kimbo,

What you are experiencing with the hyper-sensitivity hearing is called hyperacusis.  I experienced it when I was in W&W and called my neurotologist.  He put me on a low-dose dexamethasone (2 mg, 1 mg, .5 mg) tapering.  It got rid of it within a day and it's never been back.  You might want to try that.  Plates, ice cubes, newspaper rattling...it was awful.

Tisha

[Mickey]

Hi Kimbo! W+W also with around same size AN and yearly MRI`s. I get the tinnitus with sometimes a little crackle. It is bearable to me and I probably could go on indefinately as long as it stays the same. I`ve had symptoms for 30 years already and guess you could say has become a part of me.  Investigate and try to get relief as best you can, thats what I`ve always done. Best wishes, Mickey

[kimbo]

Hi

Thank you for all your posts its reassuring when others understand your symptoms.  I have made an appointment next week to see the specialist and I really liked the idea of medication eliminating the hearing issues but I am realistic and understand that everyone is different.

Thanks

Kimbo

[ppearl214]

Hi Kimbo,

I cannot add much to what others here have already noted, but I'd like to follow this to see what the dr tells you and if they do prescribe meds to help counteract some of the symptoms you are having. Please keep us updated as it helps us should anyone else run into this.... we can then reference your experience to them.

Hang in there... and hope you are feeling better soon.
Phyl

[suz]

Hi Kimbo,
Nice to know you are not alone in this, eh? I will add that I have experienced this hypersensitivity to sounds also - and the aches and pains behind my ear as well. But as with the majority of my symptoms, they come and go. Every so often they all gang up on me at once making me feel awful and that surgery is around the corner - then they all subside. This has been happenning for the two+ years I have been watch and wait but my AN hasn't grown at all.  I hope this is the case for you as well!
I hope you get good news or a good plan when you see your doc, and keep us posted on how you are doing.
Suz

[kimbo]

Hi folks

I went to the specialist yesterday (8hrs return travel) to talk to him about the symptoms that have been concerning me recently and the response was as follows:

*Dull ache behind my AN ear (Dr - I cannot confirm the headaches are AN related often when someone is diagnosed with brain tumor they notice headaches more readily but it does not mean they are not related)

I tend to agree with him that it is hard to determine that the headaches are specifically related to my AN as I sometimes get headaches from from other things like stress, hormones etc, however; I think that altitude and pressure have an influence with the headaches because yesterday when I was traveling to Sydney with a change in altitude I developed pressure in my ear and consequently developed the ache behind my AN and yes I did tell him.

*Ear ache (Dr - the ear aches are most likely AN related but there is not allot I can do to stop them except recommend mild pain relief)

*Hypersensitive hearing (Dr - the hypersensitive hearing is related to your progressive hearing loss particularly the level of frequency.  The only thing I can recommend at this time is to plug the ear on that side when exposed to the sounds that you are sensitive to and after surgery there will be no hearing on that side.  The Dr explained there is a condition called hyperacusis and this is not caused from hearing loss it is caused by the brain interpreting sound in a particular way and an individual might hear sounds like someone turned up the volume on the world really loud.  Treatment for the condition involves retraining what the brain interprets, my sensitivity is related to hearing loss at particular levels of frequency)

The specialist looked at my two MRI and confirmed that there is no notable growth since diagnosis and at this stage surgery is not recommended until my hearing deteriorates further, my everyday balance becomes a real problem or the AN starts kissing the brain stem.  I liked that he doesn't recommend surgery until it is necessary and he reminded me that the surgery is major and I have to consider that there will be few months of recovery and rehabilitation.  I asked the Dr what outcomes are a sure-thing after surgery and he responded saying that I will definitely be SSD and I will have balance issues, how much will depend on how my brain compensates prior to surgery.  I did ask about hearing devices and he mentioned the BAHA, I asked if the BAHA could be implanted at the time of surgery and he said that he could fit the titanium post at time of surgery only adding 1/2 hour to the procedure and I would come back 3-4 months later to insert the flange.  This information definitely gave me food for thought.

Thank you for your opinions and recommendation to visit to the Dr as it reassured me that my symptoms are "AN normal" and that I need to accept this as part of the norm and get on with it.  The Dr did say please call if things were bothering me further and he will see me in twelve months. 

I am grateful for all the information on this site as everything he talked about and responded to I could easily interpret based on a knowledge that I have slowly been building for 6 months, nothing he said is strange or unknown; so thank you forum members for your experiences.


 
Kimbo

[Nicole12]

At my support group there were 2 people who have put off treatment for 5 years each, having an AN more than 1.4 cm.  No plans to rush into anything, and definitely don't want surgery. 

We discussed Dr. Lederman  (New York City) who now uses a low dose radiotherapy -- spaced 2 days apart each -- to preserve hearing etc.  I was impressed by the documents on his website. 

http://www.rsny.org/Article_008.htm

I even sent him a few questions and he answered within 6 hours on his blackberry.

If I "had to"  this is the way I'd go in the (hopefully distant) future.