ANA Discussion Forum
General Category => Inquiries => Topic started by: mcrue on October 23, 2015, 02:09:44 am
-
Greetings everyone,
I was diagnosed about 5 months ago with a 1.4 cm Acoustic Neuroma on my Right side. I'm currently on Watch & Wait until January 2016.
Is it normal to experience periodic/random "facial tingling" on my cheeks. I feel like I'm being paranoid, but I swear I'm starting to feel weird facial sensations on my cheeks (and even my scalp) which I've never experienced before.
It feels like I have "itchy lice" on my face and scalp.
It's to the point where I don't know if the sensation is because of my soap and dry skin, or if it's because of my brain tumour and AN symptoms?
Is facial tingling for such a small 1.4 cm Acoustic Neuroma a typical symptom, or am I just becoming a hypochondriac?
Keep in mind I am "PRE-treatment" on "Watch & Wait."
Many thanks for your responses.
-
I never experienced itching, but I definitely did experience facial tingling periodically, it was unmistakable. It was worse following surgery but subsided over time to the point I do not really notice it now if I do have it. Facial numbness and the tingling were among the first symptoms I noticed that led to my diagnosis.
-
Facial Sensation is from the Trigeminal Nerve..
It could be that your tumour has grown/changed and is now upsetting the trigeminal nerve.
At 1.4cm is big enough to upset the trigeminal nerve I believe...
I think it is worth getting it checked out because it could indicate growth.
-
Thank you LakeErie and PaulW,
I will certainly ask my local ENT what he thinks about moving up my scheduled MRI from early January to November given my new on-and-off symptoms. The facial tingling mainly occurs on my cheek bones (one side at a time) but it affects both sides of my face. Not just the AN side.
At this point, my main fear about Cyber Knife treatment is that I've read many cases where CK treatment has elevated peoples Tinnitus. I've also read of the very real possibility of radiation treatment leaving one completely deaf in the AN ear.
Currently I am treating my "Catastrophic" Tinnitus with a very expensive WIDEX "Zen" hearing aid which has reduced my anxiety and discomfort from the Tinnitus by about 90%. Thank God!!
I have read many cases where people go in for radiation treatment with perfectly good hearing; however, within 3 months or less they may be completely deaf in their AN ear.
If that were to happen to me it would be catastrophic because I would no longer be able to treat my "Catastrophic" Tinnitus with my hearing aid, because my hearing nerve would be gone (and unable to benefit from nerve stimulation from hearing aid) and also very likely leaving me with "roaring loud" Catastrophic Tinnitus which can no longer be treated because my hearing nerve was shot by the radiation treatment.
That is one of the main reasons why I am putting off radiation treatment as long as possible.
I'm absolutely terrified to have microsurgery, that is why when the time comes I will choose CK while the tumor is still small.
Radiation may kill the tumour, but if I'm unable to mitigate my Tinnitus then who knows what I would do...
Do you think that's a valid concern?
Plus, another main concern was wondering what the fastest timeframe has been of someone walking in and receiving radiation treatment with "perfectly good hearing", and then going "completely deaf" in their AN ear after their radiation treatment?
Can you go from "perfectly good hearing" to "completely deaf" within 24 hours in the same day of radiation treatment, or does it usually take months if it's going to happen?
I already know the stats say radiation is very good for hearing preservation, but on the same token, many people will lose their hearing because of radiation treatment. I'm just curious to know the average onset of deafness (regarding timeframe) after radiation treatment if you presented with perfectly good hearing.
As always, many thanks.
-
My AN size was about the same as yours when I opted for GK. Intermittent facial and tongue numbness started within two weeks of the GK, but I felt pretty normal most of the time. Gradually over the next six months I lost all useful hearing in my AN ear. If I had it to do over again, I would wait until treatment was medically necessary. Since these tumors are slow-growing, you can monitor with MRIs. If it is not growing or too close to your brain, the risks of W&W seem slight. Most of us look for treatment solutions, but with ANs there is rarely a medical fix. We trade one worry for another, one symptom for another.
-
Thanks SueLL,
I agree with your thoughts 100%
-
Good news, Greg. You’re fine!
Take Care ;)
Doc
-
Hi mcrue.. I know it's been awhile since this topic has been addressed but I'm right where you seemed to be at the time of your post. I was diagnosed last Thursday...with only slight hearing losd, tinnitus and imbalance. Since diagnosis, I THINK I am experiencing the tingling in my scalp, numbness around nose and the crawly tingly feeling on opposite side of AN...as of right now, I do not have a first consult until June 28th....craziness...I'm on the list if there is a cancellation. In the meanwhile, well, I'm panicking. So as you are the first member that I have ran across that had these symptoms, is there anything you can share with me as far as what your doc might have said...if they have stopped
..etc etc...:)