My Story

[apoteca]

Hello everyone,

My name is Matteo, I'm 34 years old and I live in Prato in Italy, I officially joined the Neurinoma Club from April 6th 2018 when from a MRI I got the response that identified a vestibular schwannoma on the left of 0.4x0.1 inches (the third measure was not available). On resonance it is called "small"... but I think when you find out that you have a small tumor you can not see anything.

I try to summarize my story:
- from mid-2016 I developed a tinnitus which I initially felt only in the bed when I wake up in moments of utmost silence;
- after having perceived the symptom for about ten consecutive days I decided to go to the family doctor who sent me to the specialist in otorhinolaryngology telling me "He will give you all the tests... you know... sometimes tumors are formed benign on the nerve "... basically the family doctor had anticipated with the intuition, a couple of years, the correct diagnosis... I begin to read something about our pathology preparing for the future...;
- the otolaryngology visit does not decree anything special... cortisone therapy (which in truth I did not practice given the lack of conviction of the specialist himself)... washing of ears with ear spray and washing the nasal cavities with sterilized sea water;
- after 15 days audiometric examination that reveals a slight bilateral hypoacusia as a chronic trauma ... moral of the story... "the hearing loss is slightly more marked on the left and from there will be started tinnitus... must keep it...";
- in January 2017 the same tinnitus still persists for intensity and I decide to turn to another specialist ... repeats audiometric examination that finds slightly worse on the left... "I do not prescribe drugs because in my opinion have no effect if not enrich the producers... ";
- in October 2017 the tinnitus has a sudden peak increasing in intensity... I go back to the otolaryngologist who finds a further slight decrease in audiometric... I describe the disorder... he prescribes a mild pharmacist's preparation for "the pressure in the 'ear' that I suppose is going to hydrope (even in that case I do not perform the therapy because of the specialist's lack of conviction)... with due calm I suggest to perform an ABR to avoid the very poor hypothesis of the presence of the Unnamable;
- in January 2018 I perform ABR which does not show alterations on the acoustic nerve;
- in March 2018 new episode of increased intensity of tinnitus with hyperacusis on high frequencies... initially hypothesizes a syndrome of Ménière... then looking at the audiometric track that has a pace contrary to Ménière suggests an RMN to permanently ward off the risk of the unnamable;
- April 2018 confirmation of the presence of the Unnamable... I read the internet and the present forum, making me a culture about anatomy, therapies, risks and possible consequences... I go to Florence, directed by my otolaryngologist from an Audiologist Professor Paolo Vannucchi who performs again audiometry and following impedometry, vocal audiometry, vestibular examinations... recommends periodic checks and possibly to evaluate radiotherapy with GammaKnife recommending a consultation with Dr. Lorenzo Bardi... then I go to Pisa where I am visited by Dr. Liberti, a student and friend of Fukushima who, in addition to a free consultation of about 40 minutes, impressed me with the great competence, humanity and empathy... Liberti accurately describes the intervention, his vision on the inevitability of the same and advises against radiotherapy for the complications that occur in case of subsequent surgery (cite also the risks of malignation of the lesion that I read on this same forum do not have clear scientific confirmations)... it lists with precision the dangers and the probabilities of the same... suggests to repeat MRI between 6-7 months and to evaluate if something over there it moves... if it moves, it intervenes immediately before a further deterioration of hearing.
- June 2018 I begin to perceive the tinnitus in the other ear, the one without neurinoma ... since the resonance of two months before was clean from the right side I hope that this tinnitus is a brain compensation or deriving from another cause. Do you have something to tell me about it?

Greetings,
Matteo Giusti

[draguln]

Hi Matteo,

Your story sounds like mine. I am 35 years old, from France and have been diagnosed in January 18 with a 5mm acoustic neuroma on the right ear. I had the MRI because of tinnitus on the right side only.
End of March, I began to have a left tinnitus (milder than the right one and pulsatile type).  In May, I experimented weird feeling like facial tingling on the left side and mild earache. I currently feel a pressure around the left ear. I didn't investigate further since my next MRI were planned end of June and I was convinced to have a second tumor on the other side.
Finally, my MRI came back without any tumors on the left and no evolution for the right NA ! The MRI was with contrast and the slices very thin
I don't think they miss something on the left since they confirmed me they have carefully search for any abnormality explaining my issue.
Frankly,I still don't understand what is happening on the left and I'm going to see a specialist to find out the root cause.
In conclusion, even with some weird symptom, I have no tumor on this side. 
Greetings
Draguln

[Ellen K]

Draguln,
I just wanted to let you know that I have a ver small - 3mm - right sided AN, but I also have left sided facial tingling,  twitching, and occasional tinnitus. I also have occasional pain in my left eye and daily double vision, none of which can be explained. My neurologist has no explanation of why this occurs, and the left side are always clear on MRIs.

I've decided not to worry about it, as there's not much to be done. Just make sure to keep mentioning it to doctors when you get MRI check ups.
Ellen

[DodgeAU]

Hey Matteo

Thanks for sharing your story. I had similar issues 3 years ago. Started hearing loss on my left ear and mild tinnitus, that time it was pulsatile tinnitus on the left ear. Then I had vertigo once then dizziness for a year. and my tinnitus gone away. Went to ENT and had MRI The result of MRI was clear so I was not given any treatment.

But January this year I felt further severe hearing loss and tinnitus came back. August 2018 had MRI again and there they found 6mm x 4mm x4mm AN in the internal auditory canal on left. I'm on observation now to determine growth rate.

My past 3 years gave me an indication that there is something wrong with my left ear my first MRI did not see neuroma as it was still developing.

[draguln]

Hi DodgeAU,

Was your first MRI performed with contrast ?
I do hope a unseen tumor is not the cause of my issues on the left side (itchy ear, facial tingling and periodic pulsatile tinnitus). One is enought to deal with.
Kind regards,

Draguln

[DodgeAU]

Hey Draguin

I did confirm with clinic that I had contrast with my MRI 3 years ago.

That means my AN has grown approx 6mm within 3 year period. . It’s kinda mixed feeling I’m sad to know that I have AN but on the other hand I’m glad that finally I know now what’s wrong with my left ear. Btw, my right ear is perfectly fine No issues at all. I have no balance or facial issues, only severe hearing loss and constant tinnitus in left AN ear. I just did balance tests in clinic this week and still perfect.

I hope your symptoms on the other ear are not indications of another neuroma. I’ve read NF2 type neuroma is hereditary while single sided neuroma could be caused by environmental factors.

I have a feeling this was caused by using mobile cell phone on my left ear for many years,,, maybe just my best guess for myself.

Do you have any family or relatives with neuroma?

DodgeAU

[draguln]

Hi Dodge,
I do not have any relatives with neuroma. Both of my parents are 70+ old and without health issue. At first, I believed as you that it prevents me from NF2.
However, according my research, half the case of NF2 are not hereditary but are related to some issue during foetus creation.
I'm still struggling (and the doctors as well) to understand what is happening with my left side.
In January 18, I began with only tinnitus but disturbing in the right ear. It never stoped and MRI ordered in January shows the right 5mm AN. Before that not symptom at all.
In March 18, I began to get some tinitus in the left ear... ( Pulsatile type and only few time per day, maybe not every day).
In May 18, I began to get what I called my left facial tingling (pressure or mild burning feeling in cheek, lips, temple , corner of the mouth). Location varies and it is not all the day but almost every day.
End of June 18, MRI 2 showed nothing in the left side and still a 5mm right AN. I had other tests that show no hearing impairment on left ear and very mild on the right one. I'm due for MRI in January 19. Hopefully, I still will be clear...
I used a lot my mobile cell phone on my right ear but you know AN exist before cell phone invention. Hopefully, they will found out what is the root cause and how to treat them without damage.
Draguln