Newly diagnoses 1.2 cm AN

[drirf]

45 yrs old
History of long standing tinnitus  for 20 years but it was bilateral
Two previous episodes of left sided deafness  , first 6 months back which resolved  spontaneously . It was approximately 20 db loss. Second attack 2  months back which  resulted in 70 Db hearing loss ,given steroids as it was treated as idiopathic neurosensory hearing loss.
 In beginning of October ,2016:  sudden onset of vertigo and imbalance for one day duration However this time it was vertigo, imbalance and vomiting as predominant symptoms which I never had in life. MRI of brain showing left sided intracanalicular vestibular schwannoma 1.2 cm. No mass effect or CP angle extension.  Used steroid for almost 10 days and symptoms settled.

Now left with left sided deaf ear, tinnitus, ear pressure feeling and some feeling for disequilibrium. For example difficulty on walking on straight line and unable to stand on one leg while changing etc. Was advised W + W and to repeat MRI after 6 months.
In view of symptoms , is W + W acceptable approach ? With disequilibrium ,surgery better than radiation ?

[ANSydney]

Hi drift. Welcome to the club that nobody wants to be a member of but everyone is friendly.

From what you've stated, it sounds like your growth rate is rapid. If you can tolerate your symptoms, a 6 month follow up MRI would be useful. This will give you some indication of growth rate. I'd also look for any signs of facial nerve degradation (facial palsy or altered taste). From what I understand, nerve damage that is prolonged is basically permanent.

If I was in your shoes, I would wait for the 6 months MRI, but actively look at what to do if there is rapid growth. That is what I'm doing for a 2.6 cm tumor that is pressing on the brain stem, but I have very little symptoms (mild hearing loss, mild dizziness if I rapidly rotate to one side and altered taste). The symptoms started about three years ago (hearing loss), but I didn't follow up until I realised that the altered taste only affected one side of my tongue - then it became apparent!

In summary, use your time to talk to various doctors (at least one surgeon and one radio surgeon), research the evidence while waiting for the 6 months MRI. If symptoms get worse, this may change the plan. Most importantly, I'm not a doctor and the consensus from several doctors would be more valid.

[arizonajack]

Now left with left sided deaf ear, tinnitus, ear pressure feeling and some feeling for disequilibrium. For example difficulty on walking on straight line and unable to stand on one leg while changing etc. Was advised W + W and to repeat MRI after 6 months.
In view of symptoms , is W + W acceptable approach ? With disequilibrium ,surgery better than radiation ?

Your history pretty much matches mine. Read me at the link below.

Now that you are already deaf in that ear, the major life changing damage has already been done so waiting 6 months to chart the actual growth rate of your tumor is almost a necessity.

Mine grew 20% in my first 6 months after diagnosis.

No real harm but I suggest you do your research about treatment in those 6 months in case your tumor grows and your symptoms don't change.

Your tumor is about the same size as mine was when I had my GK.

[MichaelNorCal]

I just joined the club too!

Meeting with neurosurgeons now as my 23mm AN is causing lots of unpleasant side effects.

I have found unbelievable value here. You made it to the right place.

Folks like arizonajack and ANSydney have been really helpful for me. Reading the stories of what these guys have dealt with has helped me find peace and stay calm.

Be sure to check out the other materials available. I recently started watching the "New Normal" webinars. Helpful to know that things will work out.

Take care,
Michael

[drirf]

Thanks for all replies. Now again I had two more attacks of vertigo, vomiting and imbalance. Usually if neuroma is inside the canal, it should not cause symptoms like this especially vomiting. Any one else experiencing the same?

[Dee-dee]

Hi
Go get a second and third opinion for experts doctors in AN.  I don't think vomiting is usual.  I never vomited. Could be wrong.  Anyone else care to comment?

Hang in there.

[sharonov]

My thought is that if you are now deaf in that ear, translab surgery seems to present the best option. A doctor here at House (where I am currently recovering from retro-sigmoid) said that they are finding malignancies in people who were treated by gamma knife or cyber knife in the past. I suppose some people are more susceptible than others, but who knows who is? 

Nausea doesn't seem to be a common effect of ans, but I am very far from being a doctor.  Frankly, if I were you I'd send my MRI tout suite to at least three experts. Get three opinions at LEAST. Most good doctors will give you a free phone consultation. Then, If you're short on cash, beg borrow or steel to get yourself to the best even if you have to go into debt or take out a mortgage.

Good luck, Club Member.

[ANSydney]

I like to match probability of malignancy from radiosurgery (~0.01% to 0.1%) against probability of death from microsurgery (~1%). This is from the paper at http://appliedradiationoncology.com/articles/interdisciplinary-management-of-acoustic-neuromas .

If someone has statistics from a paper, I'm sure we'll all be interested.

[sharonov]

What the doctor said here (and he is an internist, not a surgeon) is that these cases are just beginning to appear, since gamma knife and cyber knife haven't been around that long. So many people in my age bracket have malignancies from radiation given them long ago for unrelated reasons that I can understand how time would be a factor. For someone my age, if I had had the option of radiation I would have gone for it. But for someone in their 40's or less, who could be looking at 50 more years of life, it becomes murkier.

[drirf]

Basically I contacted two neurosurgeon and two radiation oncologists. Two asked for watch and wait and two asked for to go for treatment. One was favoring surgery and one radiation. Though I have of symptoms of dizziness, imbalance ( difficulty in changing cloths ) pressure sensation and voice sensitivity, but there is no guarantee that these symptoms will disappear after treatment. One is surprised looking at range of symptoms that this tumor can cause

[sharonov]

Drif, I understand your confusion.  My tumor wasn't so big either, but every year my hearing would deteriorate more, and a tiny bit of growth (3mm) made it impinge on my trigeminal nerve, causing a pain that is indescribable and beyond excruciating.  But--when I first had the trigeminal neuralgia and sent my MRI to no less than 6 doctors, there was a split as to whether it was an unlucky co-incidence to have both problems in the same area or a true cause-effect situation.  Since I was terrified of surgery I opted for "watch-and-wait" until the pain came back and I had no choice.  Good luck and let us know what you decide.

[Blw]

What the doctor said here (and he is an internist, not a surgeon) is that these cases are just beginning to appear, since gamma knife and cyber knife haven't been around that long. So many people in my age bracket have malignancies from radiation given them long ago for unrelated reasons that I can understand how time would be a factor. For someone my age, if I had had the option of radiation I would have gone for it. But for someone in their 40's or less, who could be looking at 50 more years of life, it becomes murkier.

Cyberknife is relatively new, but gamma knife has been around for sixty years. Considering its uses and the number of people that had an AN radiated, there are a handful of reports in the literature of cancer, and I am sure some of these would not be a result of the radiation. I think the published rate is about 1:10,00, but the experts I talked to, and I talked to multiple neurosurgeons, said it is more like 1:20,000. Importantly, they know the precise dose of radiation you are getting, and given that many pathologies are radiated, there is a pretty good field of data for the 12-13 gy that AN's get. The frequency is just so low that it is not worth worrying about. Now if you were 20, and you have another 50 years to live, it could be a factor, but they would recommend surgery because there are little data 20 years out from radiating ANs, so the regrowth rate could spike at some point. It also is a factor in benign tumors that could transform to become oncogenic. Presently, it is still excellent management at 10 years.

[Citiview]

Blw
Do you have an opinion on pencil beam proton therapy at MD Anderson?
It's new and they are the only ones that have it. Other places have proton beam but this is different.
Perhaps this question should be it's own thread under radiation.

Drirf
Sorry about your current symptoms. If you had two bouts of hearing loss I wonder why you weren't given an MRI sooner?

[ANSydney]

Proton beams sound interesting because it's possible to actually increase the dose and then suddenly drop as it travels in tissue, while photons (as used in Gamma Knife, Cyberknife, LINAC etc) drop in dose as they travel ( https://en.wikipedia.org/wiki/Bragg_peak ). However, everything else has to kept constant, such as number of beams (Gamma Knife) or time of beam convergence (the others). I don't know if this is the case.

If you really want to see the way of the future (unfortunately not now), look into MRI guided focused ultrasound. Lars Leksell looked into ultrasonic surgery before settling on the Cobalt-60 ionizing radiation treatment used on the Gamma Knife. MRI guided focused ultrasound can be used for surgery or temporarily opening up the blood-brain barrier to let pharmacological access to the tumor. I hope to start a discussion thread soon on this.

[Blw]

Blw
Do you have an opinion on pencil beam proton therapy at MD Anderson?
It's new and they are the only ones that have it. Other places have proton beam but this is different.
Perhaps this question should be it's own thread under radiation.

Drirf
Sorry about your current symptoms. If you had two bouts of hearing loss I wonder why you weren't given an MRI sooner?

My specific case guided my choice. My AN was on the facial nerve and no one recommended surgery, which I was not a fan of as radiation and surgery have pretty similar outcomes. I looked at Cyber and Gamma. At first I thought Cyber because they have a plastic frame and it is not attached to your head. Plus the radiation source moves. However, when I thought about it, I did not want to risk a repeat, again because of the facial nerve. Surgery on a irradiated tumor is also harder. My rationale ended up being it had to be right, and my best chance was Gk. I based this on the decades of use and published outcomes. As far as using a new technology, that would be a consideration if you got vast improvement--like a huge bump in hearing retention. However, new technologies often need some fine tuning. I think with early Gk, they used a much larger radiation dose, so the hearing loss was greater. Personally, I'd pass on new technology until there is a track record.