Newly diagnosed and seeking input on treatment for my particular symptom set

[JD808]

After 10 months of being treated for ear infections, allergies, and finally Ménière’s disease, I finally demanded an MRI to get to the bottom of my condition. Symptoms started in 8/2017 as tinnitus and slight balance issues, which progressed to December 2017/January 2018 when I began experiencing ear fullness and hearing deterioration. Dr (GP) gave me a referral to an ENT when I told him I was having particular issues with balance especially at night. ENT tells me Ménière’s disease and starts me on Predisone steroids at the end of March and establishes a 40% hearing loss in my right ear. Some extensive international travel intervenes and the tinnitus improves, but a hearing test in May reveals 95% hearing loss in the right ear and no word recognition. MRI ordered and a VS/AN is discovered in the right IAC at 1.5CM. No one in Hawaii treats these, and my ENT says surgery is the best option. Very quickly this site becomes my savior and information source as I try to figure out a plan. I narrow down 2 surgical teams, Friedman and Schwartz at UCSD and Slattery at House for an assessment this upcoming week as the best options given my geography.

In the past 2 weeks, I’ve noticed some tingling/numbness in the skin on my skull on the right side and it is increasingly uncomfortable to sleep on my right side (just can’t do it). In addition, my right side neck muscles where they connect with the skull sometimes ache.

Additional research here has me second guessing surgery as the only route per my ENT and giving strong consideration to the Gamma Knife, Cyber Knife, Proton Beam (with the Proton Beam sounding the best of the three for the reduced side effects). Admittedly, with my hearing already gone, my biggest fears are the facial nerve damage issues that I’ve read about here most often associated with surgery.

This group is a wealth of knowledge and experience and I’m curious what others think given my set of circumstances - no hearing left in the right ear, mild to moderate balance issues which I can manage well, tinnitus much lower than when it started (2-4 on a scale of 10) and the odd new scalp numbness on my right (AN) side. I’d appreciate anyone’s thoughts, ideas, recommendations, etc.

[golfguy49]

You have consulted with some of the best in the country, so that is a great start.   If I were in your shoes, and my hearing went from 40% loss to 95% loss in such a short time, I would elect translab surgery immediately and get that thing out.  Translab is possibly the best bet to preserve the facial nerve and you will lose all hearing the right ear, but it is of course dependent on what the doctor says and what the cat scan tells them before surgery.  In my opinion, and from everything I have researched and heard from people on this site, yours in not a great 'watch and wait' situation.  Gamma may stop the growth, but it may not and it also cannot assure with any greater certainty that facial nerve will not be impacted (especially with post-Gamma tumor swelling).  Given the hearing loss, translab sounds like the way to go IMHO.

[JD808]

Thanks Golfguy, I appreciate your input. The speed with which the hearing loss occurred troubled me as well until I read that for several folks on here the hearing disappeared overnight. I have my consults this week with both teams of doctors so that should lend more insight to the situation.

[notaclone13]

Hi JD808,
Sorry to hear your diagnosis, I also have an AN in the right IAC.  Several forum members have had Cyberknife performed on their ANs recently with relatively good outcomes (kens2020, gary.s and Gtmochi).  Gtmochi was treated by Dr. Chang at Stanford and posted daily through process, as did gary.s and kends2020. Their posts are very informative.  My ENT was also pro-surgery and not favorable towards radiosurgery for reasons not clear to me.  If you are young, can afford the recovery time and have a good support system, surgery may be your best option. Then the nuisance is gone. But with a tumor your size all options are open and if you decide on Cyberknife the best choice is Chang at Stanford. Feel free to PM me if you want to compare IAC AN issues.

[PaulW]

If you decide to go down the radiation path thoroughly explore the statistics for Gamma knife, Cyberknife, and Proton Therapy relating to vestibular schwannomas.
Damage to the Trigeminal and Facial Nerves is far higher in Proton Therapy.

Unfortunately Proton Therapy is not as accurate as Gamma Knife or Cyberknife, which means they must radiate a larger volume to ensure they get the tumour.

When tumours are small, this extra volume becomes very significant and counteracts the advantages of protons

As tumours get larger the safety margin added to Proton Therapy becomes a decreasing percentage of the total volume radiated, and radiation to other organs is less.

Proton therapies strengths are,
Pedeatric tumours
Large tumours mostly in the body, where accuracy is less important.

Cyberknife strengths.
Highly accurate
Small-Medium size tumours anywhere in the body
No head frame.

Gamma Knife
Most accurate machine for the head
Only treats brain tumours
Disadvantages, requires a head frame for the highest level of accuracy.

The more accurate the machine the less radiation you receive too.


Any treatment is a roll of the dice, and you can have good results and bad.
The published statistics for vestibular schwannomas show the dice fall your way more often with GK and CK

[JD808]

Thank you for the feedback. Much to consider here as my symptoms now include some implication of the facial nerve. I'm concerned about the swelling issues with any of the radiation treatments.