New Symptom

[Vivian B.]

Hello,

Just wondering if anyone prior to treatment had a funny sensation at the corner of their lip of the affected area. It's not numbess or tingling, just feels like something is dripping but it's not. It's not constant, but comes and goes. Should I be concerned? I already called the Neuro. last week to ask him about the rice krispy noise in my ear which is now gone by the way and don't want to have to call him every time I feel something. He did tell me upon being diagnosed to call him if anything changes during the time that I am waiting for the next MRI. I am thinking that he meant if any serious symptoms occur? How do you know how serious the symptom is? I also sometimes hear a noise like a car driving quickly by me, also comes and goes. I had this even prior to being diagnosed. Do symptoms go away after treatment?

I would appreciate any answers that you may have.

Thank you

Vivian

[Lilan]

Hi, Viv. I feel like I'm always jumping in to say yes! I have that symptom! but it's true! The cranial nerve symptoms are pretty predictable!

You may have a touch of facial weakness on that side even if not visible to the eye. I would definitely keep your doctor apprised, because they might want to offer you a course of steroids to relieve pressure on the nerves while you make up your mind about what to do. I found they sprang into action fairly quickly when facial symptoms presented.

I have realized in retrospect a few things that I noticed before diagnosis. I was never able to "wink" only my eye on the affected side, never, whereas I can singly wink the other side. I also bought a new light that I thought was making me dizzy the winter before I was diagnosed. And I have never wanted people to stand or sit on my affected side if I could help it -- I always had to have people on my right side -- for decades before being diagnosed! I'm telling my friends from way back when, "See, there WAS a reason for that odd habit of mine!"

Point being, I don't think a drippy feeling on one side of your mouth is "normal" -- it is probably related. JMO. Keep us posted!

[Vivian B.]

Hi Lilan,

Thanks for the information. I figured it may have something to do with the facial nerve. I will wait until next week and call my Neuro if it persists. I am not sure about steroids, how is this taken and what is the purpose of it?

Vivian

[mk]

I have had this "wet" feeling before, not around the mouth, but on the cheeks, kind of like having tears dripping (when there were none). When having an AN it is not uncommon to get weird sensations and twitchings here and there, due to nerve aggregation. They usually go away (like the rice crispy sound) and the doctors won't usually prescribe steroids for very mild symptoms. If you have a more persistent of severe symptom,  such as sudden hearing loss, then you should certainly contact your doctor. In such cases a course of steroids usually helps.

Marianna

[Vivian B.]

Hi Marianna,

Thanks for your input. You described it quite well actually. That's exactly what it feels like, tears dripping but none there. I left a voice message with the secretary at the Neuro's office. I was going to wait but decided to call. They did tell  me to report anything unusual. I hope they don't think I am getting paranoid, which in fact I may be.

Vivian

[Esperanza]

Hi Vivian,
I get a wet feeling at the corner of my mouth on the AN side on and off - I go to wipe it cause it feels like i've dribbled and of course there is nothing there... I also get a slight prickly sensation below my eye and a cool or hot feeling in the cheek.
I think what I am worried about now after reading your post is the krinkly sound - I had that in both ears for  longer than I can remember and thought it was normal?
Steroids don't help everyone when there is sudden and profound hearing loss unfortunately.. but I still have the crinkle sound when I swallow and yawn on my good side... should I be worried about this?
The facial feelings come and go - might not have anything for ages and then I will have a couple of weeks where it comes and goes randomly.
My specialist said it's due to vascular changes rather than that the AN is growing - it irritates the nerves which cause a chemical reaction...
Not nice but seem to be par for the course with these tumours.
I would hope once it is removed this stops.

[Vivian B.]

Hi Esperanza,

Thanks for replying. The rice krispie sound I was told by my Neurosurgeon that it was due to a cold that I had recently and did not think it was related. I know what sound you are referring to, I too get that sometimes even in my good ear, I think this is probably due to air pressure and draining. It is difficult to be on W & W but at the same time, if it doesn't grow we don't need to worry about it. I also have hearing loss, mine was gradual. It's funny how we all have the same symptoms. I also automatically feel like I have to wipe my lip but of course there is nothing there. I feel better knowing that it might not have anything to do with growth as you have mentioned. What type of treatment are you considering should you need to do something about it? Have you decided?

Vivian

[Esperanza]

Hi Vivian,  I have found it difficult to W & W at times - mostly because of my intermittant facial symptoms and the general feeling of being just not quite right and wonky headed.  I also get feelings of travel sickness type nausea regularly.  They really are nasty little (and sometimes big!) things aren't they and size does not necessarily correlate with symptoms.  Mine is small and deadly!
I am waiting for now as I have a course I want to complete before the surgery - due to its position mine is kissing my brain stem already so if it does grow even sliightly they will whip it out quite quickly.  So as long as it behaves and my symptoms don't deteriorate significantly till August 2010! I will muddle through their effects day to day.. but I will definately have it out at some point.    I really miss my hearing the most of all though - to go from no detectable hearing loss (I had no idea) to profoundly deaf virtually overnight was a shock to say the least and there are some situations I just find frustrating.   I have a glass half full though so keep smiling 

I would love to have it out via the endoscopic approach at the skull base institute as my gut instinct is that's the way for me but I am in the UK and neither the NHS or my private health insurance will go for that! and we just cannot cover the cost personally.  I have yet to find or hear about any specialist in the UK who approves of the approach for AN removal, having said that I have been recommended the retro. and the translab approach by two different speclialists over here (each one favour a different approach for me?!)  I may yet see someone else before I make my mind up lol.

[LisaP]

Hi Vivian,

I also am W&W, and too find it hard some days due to symptoms.  My symptoms come and go, I have good and bad days for a small AN.  It may be small but some days it "kicks my butt".  Most of my symptoms are headaches, dizziness, facial pulling, ear pain and ringing and last but not least neausea.

I tend not to panic, just trying to deal with my AN on a daily basis.  Yes there are days where I would like this whole thing to be over, but for now am willing to W&W.

Hang in there,

LisaP

[Vivian B.]

Hi Esperanza and Lisa

Thank you both for your thoughts. Sometimes it helps to know that you are not alone. Whether or not you have good support at home and work, no one really knows what this feels like unless you have one. All the best.

Vivian