Vestibular Schwannoma / Acoustic Neuroma
Discussion
Short version is I have a Vesticular Schwannoma. A benign tumour that impacts hearing and balance, probably (& hopefully) not much beyond.
Long version is I lost my hearing aids for the umpteenth time, thankfully NHS so I just pay the idiot tax. While getting my new set, the audiologist said I should probably get a new test as been 4 years. Arranged promptly.
"Slightly concerning" considerable deterioration in one ear, referred for an MRI. Appt came in a few days for a couple of days later so I added myself to the slightly concerned list. They said I'd hear within 2 weeks.
3 weeks came so I'm more relaxed, but with a holiday planned (now on the beach) I thought I'd better follow up in case was anything for insurance. Audiology said I had been referred to ENT so a little bit of calling around (everyone super helpful) to find out who and spoke to a nice doctor who said I have a Vesticular Schwannoma. By chance she was going to get in touch the same day.
It's a benign tumour on the nerve to my ear. She said for ~1 in 3 people it never grows, but possibly has in my case with the deteriorating hearing. Of those, another 1 in 3 need an intervention either surgical or "x-ray" (guessing a softer word for radiotherapy). The people who need interventions may need more later. Unchecked they can lead to fluid on the brain.
Referred to Oxford (about an hour) but that's as far as we've got. I guess better knowing I have something even if it's just monitored as necessary. My wife is already under an Oxford consultant for cancer shenanigans (I presume I'll be JR and she's Churchill).
It cost me an extra £40 on the travel insurance. The lads at work already refer to it as Tumour Thurman and I'm going to milk it for all it's worth. It's a pretty rubbish 'brain tumour' all things considered.
Long version is I lost my hearing aids for the umpteenth time, thankfully NHS so I just pay the idiot tax. While getting my new set, the audiologist said I should probably get a new test as been 4 years. Arranged promptly.
"Slightly concerning" considerable deterioration in one ear, referred for an MRI. Appt came in a few days for a couple of days later so I added myself to the slightly concerned list. They said I'd hear within 2 weeks.
3 weeks came so I'm more relaxed, but with a holiday planned (now on the beach) I thought I'd better follow up in case was anything for insurance. Audiology said I had been referred to ENT so a little bit of calling around (everyone super helpful) to find out who and spoke to a nice doctor who said I have a Vesticular Schwannoma. By chance she was going to get in touch the same day.
It's a benign tumour on the nerve to my ear. She said for ~1 in 3 people it never grows, but possibly has in my case with the deteriorating hearing. Of those, another 1 in 3 need an intervention either surgical or "x-ray" (guessing a softer word for radiotherapy). The people who need interventions may need more later. Unchecked they can lead to fluid on the brain.
Referred to Oxford (about an hour) but that's as far as we've got. I guess better knowing I have something even if it's just monitored as necessary. My wife is already under an Oxford consultant for cancer shenanigans (I presume I'll be JR and she's Churchill).
It cost me an extra £40 on the travel insurance. The lads at work already refer to it as Tumour Thurman and I'm going to milk it for all it's worth. It's a pretty rubbish 'brain tumour' all things considered.
The 'X-ray' portion of treatment referred to is more likely to be gamma knife than traditional radiotherapy with X-rays.
The surgical removal of a Vest Schwannoma is long (6hours or longer), involved procedure with a myriad of possible complications. Its not an easy option.
Good luck OP
The surgical removal of a Vest Schwannoma is long (6hours or longer), involved procedure with a myriad of possible complications. Its not an easy option.
Good luck OP
Back on the slightly concerned list 
Thanks for the insight.
There'll be a letter waiting for me when I'm back from holiday and i'll learn more with my referral. Have a few weeks before another holiday (because life's too short), so hopefully timings work out.
Will update the thread.
Thanks for the insight. There'll be a letter waiting for me when I'm back from holiday and i'll learn more with my referral. Have a few weeks before another holiday (because life's too short), so hopefully timings work out.
Will update the thread.
ucb said:
The 'X-ray' portion of treatment referred to is more likely to be gamma knife than traditional radiotherapy with X-rays.
The surgical removal of a Vest Schwannoma is long (6hours or longer), involved procedure with a myriad of possible complications. Its not an easy option.
Good luck OP
The surgical removal of a Vest Schwannoma is long (6hours or longer), involved procedure with a myriad of possible complications. Its not an easy option.
Good luck OP
Vestibular - with a B, not like testicular
A little taster of how fast-moving yet administratively poor the NHS is in a few weeks.
I've had letters and texts about appointments and referrals earlier in this process....
I was referred to Neuroscience at Oxford JR and there was a multi-disciplinary team meeting on 8th August. Referred to Skull Base Neurosurgery for an urgent appointment - which I missed.
Because somewhere along the line, my address has reverted to an old one from 5 years ago and a landline number that I don't even recognise (I've not had a landline for at least a decade).
I walk by my docs surgery everyday so thought I'd pop in and ask if there was anything on my file - and there's nothing since the referral for the original MRI. Spent a few hours ringing around at Oxford trying to find who was dealing with me (and mostly everyone super helpful) and found out the above.
Now have my urgent appointment from August on 17th September. Will update when I have news.
A little taster of how fast-moving yet administratively poor the NHS is in a few weeks.
I've had letters and texts about appointments and referrals earlier in this process....
I was referred to Neuroscience at Oxford JR and there was a multi-disciplinary team meeting on 8th August. Referred to Skull Base Neurosurgery for an urgent appointment - which I missed.
Because somewhere along the line, my address has reverted to an old one from 5 years ago and a landline number that I don't even recognise (I've not had a landline for at least a decade).
I walk by my docs surgery everyday so thought I'd pop in and ask if there was anything on my file - and there's nothing since the referral for the original MRI. Spent a few hours ringing around at Oxford trying to find who was dealing with me (and mostly everyone super helpful) and found out the above.
Now have my urgent appointment from August on 17th September. Will update when I have news.
Edited by 22 on Thursday 11th September 09:05
ConnectionError said:
The 10th September was yesterday
Yeah, sorry edited. It's the 17th! I feel bad for 'missing' an appointment as I know what a burden missed appointments are to the NHS, but I knew nothing about it. Strange how my docs aren't getting copies of stuff too. Anyway, I'm back in the system. 
This is my head, looking up through my skull from the bottom, eyes would be right at the top of the pic.
Red shows my hearing and balance nerves as they should be (they are the grey lines in the white).
Green shows the nerves are stretched super thin around the tumour - currently 1.8cm.
Talked through different phases this may go through and the options now and ahead. Radiotherapy is Gamma Knife or Linear Accelerator (LINAC).
He said right now that either surgery or active monitoring are the realistic choices. Being small, he thinks he can 'cure' the tumour with surgery and that should be it forever. Primary purpose of surgery is to protect my deteriorating hearing - but 50% chance I would totally lose it (in one ear) from surgery. He said the nerves are incredibly fragile, to the point a bit of spilled blood in surgery can be damaging to them. I'd lose the balance nerve whatever happens - although often the other ear learns to compensate. I'd be in surgery 'all day' in the hospital for a week and probably 2 months off work and it's notifiable to the DVLA - even if temporarily. I said I'm usually back on my feet and itching to work, but he said the room will be spinning for a few days, I'll feel like trash for a few weeks and even then recover slowly - sounds lovely!
Or I can have an MRI again in 6 months and see if it's grown.
Mrs 22 has some health stuff going on, so I could do without being off my feet for 2 months which is currently the factor that makes me lean towards monitoring (although this might never change). If I'm having surgery I would get it done privately (same chap, Bupa through work) to tie-in with work & life timings best I can.
Red shows my hearing and balance nerves as they should be (they are the grey lines in the white).
Green shows the nerves are stretched super thin around the tumour - currently 1.8cm.
Talked through different phases this may go through and the options now and ahead. Radiotherapy is Gamma Knife or Linear Accelerator (LINAC).
He said right now that either surgery or active monitoring are the realistic choices. Being small, he thinks he can 'cure' the tumour with surgery and that should be it forever. Primary purpose of surgery is to protect my deteriorating hearing - but 50% chance I would totally lose it (in one ear) from surgery. He said the nerves are incredibly fragile, to the point a bit of spilled blood in surgery can be damaging to them. I'd lose the balance nerve whatever happens - although often the other ear learns to compensate. I'd be in surgery 'all day' in the hospital for a week and probably 2 months off work and it's notifiable to the DVLA - even if temporarily. I said I'm usually back on my feet and itching to work, but he said the room will be spinning for a few days, I'll feel like trash for a few weeks and even then recover slowly - sounds lovely!
Or I can have an MRI again in 6 months and see if it's grown.
Mrs 22 has some health stuff going on, so I could do without being off my feet for 2 months which is currently the factor that makes me lean towards monitoring (although this might never change). If I'm having surgery I would get it done privately (same chap, Bupa through work) to tie-in with work & life timings best I can.
Tough decision, especially with your OH going through health stuff as well. I can see why a monitoring approach would be tempting. Hope it goes well whatever you decide.
Thanks again for your supportive messages a few months ago: Mrs B is now in the ongoing medication phase post-radiotherapy, with fortunately few side effects. Next scan is in January.
Thanks again for your supportive messages a few months ago: Mrs B is now in the ongoing medication phase post-radiotherapy, with fortunately few side effects. Next scan is in January.
I lost my hearing and balance in one ear due to an over confident/under skilled surgeon some years ago. Loss of hearing in that ear no big deal other than the slow arrival of tinnitus and the associated confusion of mono hearing. I am able to ignore the tinnitus, unless I think about it. Loss of balance was more of an issue until my brain sorted it all out which took several months. For the first few weeks I was unable to drive as movement in the car resulted in blurred vision. It was impossible to walk in the dark as I just fell over without a visual reference. Turning my head (as in looking left/right) to cross the road caused me to fall; fraught with danger when standing at a kerb. In fact rapid head movement of any kind caused me to fall. So, if you have to have the operation and you lose balance be aware that whilst a slow process your brain does sort it all out, it just takes some time. What ever you decide will be the right decision.
Rick
Rick
Thanks for sharing Rick.
The spinning rooms, nausea, tinnitus and time it takes for my brain to work out my balance is not exactly an appealing prospect.
My hearing on one side is pretty terrible due to this already. I don't know if it comes back if they can successfully remove it - or it stays at the current level - but with a 50% chance of losing it totally I'm not convinced. I was initially told I was losing my hearing due to loud music etc. growing up. I think I've been wearing hearing aids for 10+ years - I'm not sure.
The spinning rooms, nausea, tinnitus and time it takes for my brain to work out my balance is not exactly an appealing prospect.
My hearing on one side is pretty terrible due to this already. I don't know if it comes back if they can successfully remove it - or it stays at the current level - but with a 50% chance of losing it totally I'm not convinced. I was initially told I was losing my hearing due to loud music etc. growing up. I think I've been wearing hearing aids for 10+ years - I'm not sure.
Boring (but welcome) update.
My scan this time around was in Oxford, but was a Saturday morning so only an hour journey. Diagnostic & imaging facility in an industrial estate - opposite the hotel where I often stayed if Mrs 22 had an early treatment in the Churchill to save the journey a while back.
Chap said 4-8 weeks to hear results. Phone rang this morning (48 hours later). No change. I'm moved to the scan-once-a-year list so happy with that.
I fell down the stairs at work the other week, thankfully was only one stair from the bottom - absolutely no sensation or light-headedness, just the shock of suddenly being on the floor. Similarly stood up and then started to go down at home, arm out onto arm of the sofa and stopped the momentum. I think part is in my head (well, it all is!) and I've convinced myself I'm losing my balance, or maybe was always this clumsy - just more aware to it now. I told the registrar on the phone and she noted the episodes. I also borked my knee doing my first and only park run maybe 10 weeks ago and it's not go a lot better (probably should get that checked out too) so maybe the knee plays a part in me going down.
ETA: I tried to get an additional life insurance policy to cover a loan on a commercial property and no one would accept me online with the diagnosis - probably will divert a % of an existing policy.
My scan this time around was in Oxford, but was a Saturday morning so only an hour journey. Diagnostic & imaging facility in an industrial estate - opposite the hotel where I often stayed if Mrs 22 had an early treatment in the Churchill to save the journey a while back.
Chap said 4-8 weeks to hear results. Phone rang this morning (48 hours later). No change. I'm moved to the scan-once-a-year list so happy with that.
I fell down the stairs at work the other week, thankfully was only one stair from the bottom - absolutely no sensation or light-headedness, just the shock of suddenly being on the floor. Similarly stood up and then started to go down at home, arm out onto arm of the sofa and stopped the momentum. I think part is in my head (well, it all is!) and I've convinced myself I'm losing my balance, or maybe was always this clumsy - just more aware to it now. I told the registrar on the phone and she noted the episodes. I also borked my knee doing my first and only park run maybe 10 weeks ago and it's not go a lot better (probably should get that checked out too) so maybe the knee plays a part in me going down.
ETA: I tried to get an additional life insurance policy to cover a loan on a commercial property and no one would accept me online with the diagnosis - probably will divert a % of an existing policy.
Edited by 22 on Monday 15th December 12:49
Interesting thread- I’ve just come into the health forum to post asking about early days hearing aid experience.
I’d accepted that my hearing was s
t from my twenties onward, having already noticed that I was (inexplicably to me at the time) very good at lip reading when I was 18. Last year, at age 48, I finally faced up to the inevitable- my hearing was affecting my work so I tried to book a hearing test at Boots. Nothing doing- under 50 requires a GP referral and my GP said that under 50 meant an ENT appointment first.
A long story ensues. But the short version is that the NHS weren’t great and in a fit of pique I booked myself into see someone via BUPA so that I could have things explained to me properly.
It is to my very great benefit that the BUPA consultation resulted in an MRI scan (and then several others) and, you guessed it, two tumours on each balance nerve: one at 1.6cm and one at 1.8cm. There are also a number of much smaller ones on my spine albeit these are not, apparently, much to worry about at this stage. Diagnosis is Neurofibromatosis Type 2.
I’ve been referred to Guys so wait to see what happens next. I’m hugely grateful that the second consultant referred me for an MRI.
I’d accepted that my hearing was s
t from my twenties onward, having already noticed that I was (inexplicably to me at the time) very good at lip reading when I was 18. Last year, at age 48, I finally faced up to the inevitable- my hearing was affecting my work so I tried to book a hearing test at Boots. Nothing doing- under 50 requires a GP referral and my GP said that under 50 meant an ENT appointment first. A long story ensues. But the short version is that the NHS weren’t great and in a fit of pique I booked myself into see someone via BUPA so that I could have things explained to me properly.
It is to my very great benefit that the BUPA consultation resulted in an MRI scan (and then several others) and, you guessed it, two tumours on each balance nerve: one at 1.6cm and one at 1.8cm. There are also a number of much smaller ones on my spine albeit these are not, apparently, much to worry about at this stage. Diagnosis is Neurofibromatosis Type 2.
I’ve been referred to Guys so wait to see what happens next. I’m hugely grateful that the second consultant referred me for an MRI.
Best of luck basher - please let us (well, me really in here ) know how you get on with options/monitoring/treatment. A quick google would suggest they are benign so that's great news at least.
Guessing that's part of the vestibular system same as mine. I'm in Bucks and under a chap at Oxford - he does private and NHS - but likely not London (surname begins with a J).
Maybe should get the thread a proper re-name.
) know how you get on with options/monitoring/treatment. A quick google would suggest they are benign so that's great news at least. Guessing that's part of the vestibular system same as mine. I'm in Bucks and under a chap at Oxford - he does private and NHS - but likely not London (surname begins with a J).
Maybe should get the thread a proper re-name.
jmn said:
A female friend of mine was diagnosed with an Acoustic Neuroma about 20 years ago.
She underwent surgery which was successful but has been left with hearing loss and also a slight (barely noticeable) droop on one side of her face.
She has to use a straw for drinking.
Thanks for sharing, facial drooping was suggested as a possible side effect from surgery, but very low risk (perhaps less risk these days than ~20 years ago?). She underwent surgery which was successful but has been left with hearing loss and also a slight (barely noticeable) droop on one side of her face.
She has to use a straw for drinking.
My mum told me over Christmas that Kirsty Gallacher (TV presenter) has one of these.
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