Hi everyone, new(ish) member of the club here. Long post ahead, thanks in advance for reading.
Jan 2017 started getting some weird symptoms like some facial tingling and strange vibrating in my ear, as well as tooth pains. I had recently had a root canal (I am convinced that the root canal made me aware of some of these symptoms) and thought that it was just after-effects from the dental work. Eventually, went to an ENT who noticed my hearing range in the high register was much lower on left side. I hadn’t noticed any hearing loss, just lots of strange ear sensations. Sent for MRI, results in SEPT 2017 on 2.5cm AN on left side. Was in total shock, not expected this at all. I have always been anxious about my health and whenever I would have strange symptoms in the past would think “oh I hope it isn’t a brain tumor!” And now this has happened to me… :S
Right now my symptoms are all super mild (except for sometimes severe anxiety) and are mostly some facial tingling, mild tinnitus, sometimes weird tooth ‘zaps”. Also I have commonly gotten some headaches and weird feelings in my head but I have had this for so long that I am not sure whether or not it is related to the AN (I know I could’ve had the AN for many years…so it is possible it was giving me these symptoms for years and I didn’t even realize!)
I am in Toronto ON (Canada) and have had preliminary appts with 2 doctors (Dr. Lin @ Sunnybrook and Dr. Cuisimano @ St. Mikes). Right now I am W&W until Feb when I have a second MRI (which will have been 6 months since first one) to see if any change.
I have been told with my medium size tumor that it is likely not “if” I’ll need treatment, but “when”. It would be amazing if the tumor didn’t grow, but I am trying to keep neutral in my expectations. My symptoms are extremely mild, the worst symptom is that I’ve been dealing with a ton of anxiety since the diagnosis, which I am trying to manage by talking to people, exercise, and meditation/yoga.
I have since become concerned that I have an AN on the other (right) side, because for the past few months I have been having some similarly weird sensations (full ear, some vibrating) on my Right side??? All the docs say that it could be just from Eustachian tube issues or something similar, or that I am being hyper-sensitive and not to worry, since there is nothing on the MRI from August. BUT the last Doc says that there is a very SMALL chance that something that looks like blood vessels in the MRI is actually a small tumor on the other side and I should do a contrast dye MRI just to rule it out, since I have been concerned about it. I have now convinced myself that I have a second one, and am just trying to get them to do the contrast for the next MRI but it might be too short notice.
For thinking about treatment: I have read the studies saying that GK is best for quality of life afterwards, especially because I really want to avoid permanent facial nerve paralysis. I know the risks of the radiation causing malignant tumors later on is very small, but as a young person (30 yrs) with a history of cancer in my family, this really freaks me out. My major fears for treatment are: malignant tumor, permanent facial paralysis, and terrible vertigo/headaches/cognitive issues.
I am not sure how to make the decision, if/when I need treatment… I know the risks of both, and it seems obvious that surgery has way more risks, but somehow I haven’t wrapped my head around the idea of radiation. Does anyone have a similar story and any advice on how they made their decision?
Apologies for rambling post, thank you in advance for any advice on how you made the decision re: treatment, and any other advice.
Thank you for reading and any comments!