Anybody out there with the same symptoms???? Smacky head and cheek sensations??

[ANnIdaho]

Anybody out there that presented or is experiencing these symptoms?

"Smacky" head: Yes, I coined this phrase as it was hard to explain to people my "headache". It literally feels like someone has smacked me up top my head or yanked my hair really hard - strange I know.  It used to not come on til after a long day working on the computer or out working in the garden etc.  But now, I can feel it even before I get out of bed.

"Cheek sensations" The feeling like your cheek is numb or as if it is just de-thawing after a walk out in the cold.  It's not in relation to the trigenimal nerve as my AN is small and totally intracanalicular at this point.

I am blessed to have great hearing still and no real apparent balance issues...which I finally proved to myself by being able to still use my paddle board this past weekend   But the pain in the head has been getting progressively worse.  My understanding is that symptoms going into GK will remain the same afterwards so perhaps I'm leaning towards surgery in hopes of alleviating these symptoms and perhaps saving my hearing.

Anybody out there that has anything similar? Too many doctors have told me that the AN can't cause these symptoms...

Thanks!

Bonnie

[lark114]

I, too, had pain at the top of my head.  It was like getting hit on by a frying pan.  This happened several months before my diagnosis (April) and lasted about a month.  So far it has not come back.  I also get intermittent numbness on my right cheek similar to what you describe.

Linda
Right AN 1.6 cm
Pretty good hearing
Balance issues (mild)
tinnitus
Still deciding on treatment...leaning towards FSR

[ANnIdaho]

Dear Linda

So glad to here I'm not alone with my symtoms! Sounds like we were diagnosed around the same time as well. I did read somewhere that the smacky head can be from the pressure the tumor exerts on the dura. But you say the head pain has gone away? I wonder if it's related to the tumor growing those putting more pressure on the iac. Making a decision on which treatment to chose is so hard! Thank you for your response and I wish you the best on your an journey.

Bonnie

[Alix May]

Yes, I had a fairly abusive childhood, and there were a couple months there that my head was quite the reminder of all of that. I rarely get that feeling now, but, then, I'm not trying to finish school, so less tired, etc.

[muffincat]

 
I have labelled my head pain as devil's horns growing.. on the top, short sharp stabbing pain that comes on  then slowly shifts to a tight band, then often going to two blocked ears with differing 'tyre' pressures and a chain connecting up the ears at the back. Sometimes will pass within say  15min or go on for several hours
 and then afterwards in my case some of the symptoms of  the A.N settle and improve, so maybe hearing or imbalance or facial movement improvement..
 I now think/imagine its a caterpillar in my head moving up and down the nerves and causing that irritation as it moves along. so good to know Im not alone, got  quickly told by my PCP that headaches are not the brain and so its stress.. so didn't bother informing him about anything else.
 I do find lying my affected side on a hot waterbottle seems to help, as tho the improved blood supply is an effective solution

[ANnIdaho]

Hi Muffincat,

What a very interesting description!  Yes, I too was told it was mostly stress which doesn't exactly help!  How big is your AN and where is it located?  Funny I can't lie on my AN side for very long and have to flip over to the other side after about 5 minutes. 

Bonnie

[muffincat]

Hi Bonnie, its meant to be  a 'soft tissue mass, occupying the R  IAM with some  CSF in the most lateral 1mm.  the mass measures 7.6mm in length and 3.5 in diameter.'
According to the surgeons I  saw, for the second opinion, that should not be in the area affecting my facial  movement.
So he is suspicious that something else is going on, as I am.
 I cant lie on my right side for very long due to previous surgery, but do try several times during the night to let the kidneys drain and the lungs inflate fully.
IF Im having stabbing facial pains lying on that side or with the heat applied does seem to be the one thing that helps it.
Just good to know Im not the only one

[Doc]

The feeling you’re referring to is commonly known as “Wonky Head” by the old timers on the forum. I actually bought the domain name several years ago. It points to my book blog which is another story. I was worried about decreased cognitive function after my surgery six years ago and started writing crime novels...book three in the series is due out in December ’15.