Discussions By Condition: Nerve conditions

NF2 / hearing problems

Posted In: Nerve conditions 2 Replies
  • Posted By: Jo1601
  • November 26, 2010
  • 09:53 PM

Hi - my hubby has mosaic NF2 - he is 41yrs - diagnosed a few years back by the genetics mob through blood screening etc. He had a VS (golf ball size) removed in 1997 and is totally deaf in his right ear. He has routine MRIs - last one just over 18 months ago and showed all clear except for a tumour on T5 which we have been monitoring for years.He has had a schwanoma removed from his arm and one from his gum over the past 5 years. He Is waiting for the next routine MRI - due feb.
My concern is that in the last 2 weeks he said he is experiencing a whooshing sound (like helicopter blades), he said voices are sound a bit robotic/ tinny. I think his hearing may be down a tad - but hard to tell as he is deaf on the right side anyways and he said the whooshing sound interferres with it anyways. He has always had tinnitus (ringing) since the first VS and this hasnt changed at all..and he didnt have a whooshing sound with the first one (just tinnitus).
The GP said there is no obvious sign of infection, but he has been put on a course of Keflex (just in case). We have booked him in for a hearing test with the audiologist next tuesday as well.
I guess my question is this - VS or AN's are usually very slow growing. If his last brain MRI (approx 20months) ago was clear - is it likely that he could have developed another VS (on the left side) so quickly and that would cause these type of symptoms so soon? How big do they have to be to cause symptons?Is it possible that it could be something else? If he hadnt had an MRI for a long time - I would be automatically thinking Vest Schwanoma - but he was clear on the last one.What are your thoughts??? cheers J

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  • I also forgot to add that he also has achalasia - it is NOT secondary achalasia to the NF2. It is primary acahalasia and not related to the NF2. He has been having probs for a long time with this as well,and about 10 days ago had botox injected into his oesphagus to relax the muscle so he can swallow. This is just a stopgap measure until they are able to do a Hellers Myotomy with a fundo wrap next year (to get him through the xmas period)..He has also suffered constant migraines since he was little (and still gets them post VS removal in 1997)..cheers Jo 1601
    Jo1601 1 Replies
    • November 26, 2010
    • 10:21 PM
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  • If an MRI was clear < 2 years ago, then it is less likely to be a new VS, but since your husband only has one good ear, he obviously should be thoroughly evaluated for whatever this new problem is. Doing another MRI and visiting with an ENT specialist (or, if available, a neuro-otologist) would certainly be reasonable. I think that the whooshing sound - called pulsatile tinnitus - is less likely to be a symptom of VS and suggests lots of other things.
    Anonymous 42789 Replies
    • November 28, 2010
    • 06:17 PM
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