On 12/21/22, I was sitting at home and my left ear suddenly began to ring. It did not stop, so the next morning I called my doctor and set up an appointment. He wanted to make sure that I didn't have a sinus issue, so he put my on some common sinus medication for two weeks and told me to advise him one way or another of the tinnitus was still occurring.
I advised my doctor two weeks later that I still had unilateral tinnitus in my left ear. He ordered me an audiogram and MRI with and without contrast to rule out a vestibular schwannoma. I received my MRI on 1/26/23 and an hour later I read the report that said I had a 4 mm x 7 mm vestibular schwannoma completely in my inner auditory canal (IAC). The audiogram showed that I do have minor hearing loss in my left ear, but overall it is still very good.
I have since met with several neurosurgeons and Otologists to get their opinion on how I should move forward. A couple felt watch and wait would be a good approach but I had another who wouldn't say one way or another but felt that he leaned with the surgical approach. All agree that if I did opt for surgery to hopefully preserve my hearing, that I should do the middle fossa approach. They feel my chances of hearing preservation are currently about 60/40. The problem is the longer I wait the more I put at risk my chances of hearing preservation.
My particular VS is very deep inside the IAC close to the cochlear. There is concern that when resecting the final piece, one wrong move and my hearing is lost forever.
I was hoping to get input from people who have had similar VS as me and listen to their experience. If you regret the decision or if you are happy with the choice you made of either surgery or watch and wait. I would like to note that all doctors I have spoken to believe I am probably too young at the moment for radiotherapy.
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DBC82
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Hi DBC82, I have similar AN/VS , 6 mm and location with slight hearing deficits My understanding is that a one off mri is just one shot in time and what you don’t know now is , how fast/ slow if at all, is your guest growing ? The general consensus is to watch and wait to monitor if it is growing In UK mri is repeated after 6 months then annually to establish growth and if it is to make those decisions if and when necessary so time is on your side . Any decision should factor in your relative youth
. I have had mine for 4 years and it has grown 2 mm in that time , my hearing has not changed, tinnitus has increased v slightly. I am 20 yrs older than you and will opt for gamma knife if my hearing deteriorates
From what I have read on this forum surgeons will always favour surgery!
Hi, I was diagnosed with a 9mm x 4mm acoustic neuroma in February 2017. Mine too is confined to the IAC. I have been on watch and wait for the last 6 years. No growth as of last MRI scan in June 2022. I have yearly MRI's to monitor. My symptoms are slight hearing loss and tinnitus. I have another mri scheduled for June. Hope this is of some help.
I have had twitching on my left forehead and eye but it doesn’t happen much. I have also noticed through the apple health app, it measures walking stability and mine has steadily declined since last August. I showed a few doctors and they found it interesting since they never knew that the iphone measures that.
Hi DBC! I was so surprised to see surgery was discussed or considered at that first discovery until I saw you were in the USA. It seems we have a very different approach in the UK. My understanding for many (40%?) don't keep growing, they are not malignant so although the initial response (for me certainly) was 'get it OUT' , after having time to really learn about the impact of our little squatters versus the impact of treatment (and treatment will not make the tinnitus go away, will likely lose some hearing anyway or all if you have surgery) I had a different view of it all. I also had absolutely the same sudden onset of single sided screaming persistent tinnitus I was sent for MRI, and diagnosed with an 12mm, Recommended w and w for 6 months, growth in that time was 1mm, and agreed a year w and w. In that time, I joined british association of accoustic neuromas, read lots about others experience (in the UK and USA) and met with someone who had the same size neuroma as me, with similar impact. She had asked for surgery and it was not an easy recovery for her, and left her with some issues, but radiotherapy wasn't an option. I was at first told the same. My AN did in fact then have a bit of a growth spurt to 25mm and I was offered either surgery or cyberknife radiotherapy. I was lucky to be under Kings College Hospital in London. I eventually chose cyberknife radiotherapy , 19.5 grays delivered over 3 sessions. It was easy and little side affects, other than tiredness and a some weird heavy head (not pain) feeling in the few months after, I am nearly a year on, don't know if it's worked, the idea is to stop growth and this works in 90% of cases, good odds I feel! The don't rescan for over a year, as it can show some swelling before the tumour starts to 'die'. I feel very grateful to have had it.
However, treatment considerations absolutely do come down to your own age, the position of the tumour and how you feel yourself about living with uncertainty. Surgery is a huge invasive procedure and waiting to see what the outcome is of scans for a few years first or researching gamma or cyberknife may be a good idea. I read a book by a neurosurgeon called "Do no harm'. Probably wasn't the best idea reading about brain surgery when it was likely I would need it, but the 'do no harm' approach is one I think is good to hold in mind when looking at all the pros and cons of treatment. I have many AN friends now via our virtual support groups whose AN's have never grown, and never needed treatment so as hard as the watch and wait is, it is better than having unnecessary treatment.
These tend to be very very very slow growing, will not kill you, your annoying symptoms such a tinnitus don't go away with treatment (but I promise you, as mad as it seems, you will adapt to it and manage it , same if you lose hearing in that ear.) I have a hearing aid with a tinnitus masker programme built in, helps a lot, and I have become very zen about it all. I went from being pretty distressed (on the inside!) in the first year or two, with now honestly just living my best life, going to music festivals, travelled around Thailand in Feb and instead of working all hours, enjoy being an independent consultant, working on my own terms. I am glad I was lucky enough to have options over treatment, and that although it's a bugger, it is not malignant, can't spread and it has made me really focus on the things that make me happy!
Try not to panic, remember to breathe, do not rush into anything and get other opinions. Surgeons will usually say operate, neuro oncologist say Gamma or Cyber, really good multi disciplinary teams should look at scans and advise together. You may never need treatment at all, and if you do, there is lots of info and support out there, just take some time. Lin x
If you don’t mind me asking, how old are you? I am 40 and from the people I have spoken to when it comes to radio surgery, they all suggest not having it done until my 50s or 60s.
Part of my dilemma is that my hearing for the most part is still very good and with middle fossa surgery, I do have a good chance of preserving or having serviceable hearing. So it is just a tough gray area for me.
I was 53 at diagnosis, 54 at treatment, however mine may have been there for 17 years or more, as they are usually very slow growing. It’s a tricky one to navigate, but you definitely have time on your side, given the size and the impact of your squatter currently. I hope you can get the clarity you need, it’ll come I’m sure, in time.
I have VEMP and VNG tests next month that can help determine if the tumor is on the superior or inferior nerve. If it is on the superior nerve, my chances of hearing preservation is around 70 to 80%. If it is on the inferior nerve, it is probably closer to 30% so I hope this will give me more clarity in my decision.
I hope that helps a little. But still hold in mind that it is comparatively very small and in other countries they would definitely not recommend such an intrusive operation on one that size, as it may never grow in a way that would impact on you further.
I would like to respond more fully but don't have time just now. I did wonder, though, why anyone would say you were too young for radiotherapy at the age of 40? Did you ask exactly why this was the case? Do they fear that it has a high risk of causing cancerous tumours for instance? It is not as if you are a child with a developing brain? I understand that preservation of hearing at the moment is your aim. I did watch some excellent videos on YouTube in which specialists discuss implications of different approaches et al. I am not sure if I am allowed to post them on here? One of them is entitled: Indications & Expectations after Gamma Knife Radiosurgery for Vestibular Schwannomas | House ONE by the House Institute. Another is: Rethinking Vestibular Schwannoma
For the most part they are not concerned with cancer as it is only a 1% chance of happening, but more along the lines that they don’t have much research of what can happen beyond 20 or 25 years as my life expectancy could be 40 or 45 more years. Plus if I do have problems after 20 or 25 years, I am at a much less desirable age to have surgery if needed plus the radiotherapy could make surgery more difficult in the future. That was my understanding.
If you go on youtube and search “Understanding Treatment: Multidisciplinary Care of Vestibular Schwannoma Patients” and jump to about 43:30, they talk about age and radiation. This is actually my team of doctors.
I totally understand your worry and panic about preventing hearing loss. Surgery is rarely the way to do that, and I had also worried that doing nothing would mean more symptoms ( including hearing loss). A few years on and a lot more knowledge and discussions with people from Brainstrust and BANA and leading experts ( those with these tumours and those treating them) the initial ‘I will get hearing loss, ‘I will lose my balance, I will get facial palsy’ worries turn out to be not the case at all for those with small ANs who watch and wait, especially with small AN. It’s treatment which can increase likelihood which we have to balance again the likelihood of growth. Just don’t rush into anything, that’s all I’m saying. How you feel right now will change. You will adapt. I hope you really can find some unbiased advice out there
Interesting debate and dilemma- what is available in so called free market for health such as USA where you may run the risk of being “ upsold” clinically unnecessary interventions verses post code lottery and potential limitations of NHS. Thanks Flappers and DBC82 for sharing. I for one will be quizzing my NHS consultant for a VEMP +VNG at next appointment!
It is really interesting to hear from others and see the huge variation of treatment plans. I’m haven’t even heard of VEMP /VNG so will be good to know more about that! All I really know is how I felt early on in diagnosis ( GET IT OUT!!!) and how I felt 18 months in when actually given a choice between surgery and radiosurgery, I felt a little more prepared for what that actually meant. It’s hard to come to terms with the fact that pretty much all the symptoms won’t/may not be relieved by treatment however it is incredible how we adapt. Good luck on your journey, wherever you are on it! Lin
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