Still considering watch and wait

[Willbur]

Hi All,

Recently diagnosed with AN about 2.3 CM. Based on some research from users on this forum as well as past studies, I've seen instances where the AN can actually shrink, however there is no scientific evidence based on what can help or cause it to shrink. Of course the Dr. told me that I need to have it removed soon, but I'm waiting on a second opinion. I've already ruled out radiation since I'm 29 and do not want to risk having it turn malignant or have side effects. I'm looking for holistic approaches that people have been using and felt have been successful. I currently take a ton of vitamins, drink kombucha, and I see that possibly accupuncture can help.

[Citiview]

Willbur
It's very rare for the tumors to shrink. Maybe 1 or 2 percent of them? There are cases of this happening in the medical literature, but it's rare. My post on the other thread states that the tumor measured smaller than before. It did measure smaller in the report, but that doesn't mean it actually was smaller, it just measured smaller. I think they are hard to measure to a degree of one or two millimeters. Most people your age and tumor size would find a great surgeon and have it removed. There's no homeopathic/holistic remedy known to treat these. It will probably grow. Mine will probably grow too and need to be treated.
Good luck.

[rupert]

Your holistic approaches may make you feel better about it  and yourself but, it's not going to do anything to kill or remove the AN.  It will stay the same or grow and chances are good it will be doing more damage as time goes on.  I know you didn't ask for my opinion but,   I am in the GK camp for treatment options.  Very accurate and I don't buy into the hype about age either.  Whatever you decide, good luck to you.

[Citiview]

Sometimes I do wonder if all the hype about GK and age makes sense. Nobody knows. The good thing is that they will have more studies in the future because patients are trending towards radiation more now. Even younger people are choosing it.
I'm not in either camp, just perennially fickle, changeable, malleable etc.

[rupert]

Malleable     

[Willbur]

Does anyone have or tried CBD oil? Also does anyone have similar symptoms on the opposite side of the AN?

[Kathleen_Mc]

Hi
Several years after resection (in fact after the second resection) of my L acoustic neuroma I developed tinnitus in my R ear, had the full work up with nothing found......doc's called it "sympathy tinnitus" (auditory nerve on the right making up for the lack of having one on the right and giving my brain stimulation).

[Citiview]

I've always reported light tinnitus on both ears. The AN ear rings worse with certain sounds that stimulate it. Chips bags crinkling, water running out of a faucet and a few others things. Also, I notice if there are loud sounds the AN ear rings more. I can have louder overall tinnitus after bicycling for some reason. It's manageable, but I would say having loud tinnitus post-treatment would be a greater fear than deafness itself. (for me)

I have high frequency hearing loss in in both ears. (out of speaking range)

[mac84]

 

Man, I've just got to comment on the 'chip bag crinkling' - as my tinnitus has gotten worse and my AN ear hearing gets worse....that's the thing that drives me nut! That, and cereal bags, ....anything like that seems like it pours right into my good ear and drives me nuts!

[ANSydney]

Willbur, the chance of an acoustic neuroma shrinking is small, but not insignificant. The best summary I've seen is "Spontaneous shrinkage of vestibular schwannoma" May 2016, at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4882965/ . Table 1 summarizes the reports from over 15 reports. The shrinkage values range from 3% to 22%.

My personal belief is that the probability of shrinkage is between ~10 - 15%.

(It's amazing that there is such a wide variation in reported shrinkage values. I can understand wide variation in surgery, since results depend on the expertise of the surgical team, but shrinkage should be fairly consistent!)

With regard to radiosurgery and the probability of malignancy, I like to match microsurgery's ~0.5% risk of death to radiosurgery's ~0.1% risk of malignancy. (The 0.1% is probably a lot lower.)

[ANSydney]

Wilbur,

I notice that you were diagnosed with a 2.3 cm tumor in May 2016. In September 2016 "Radiologist determined tumor too big". My understanding is that the "cutoff" is 3.0 cm. Stanford will also do larger ones (which makes them a good resource).

How large was your tumor in September and what options are you exploring?