Does size matter?

[johnwalter]

Recently diagnosed AN , Just seen MRI report saying 5 mm vestibular Schwann-whatsit

Still no contact from specialist team after 2weeks. Does size mean anything ? Getting trigeminal neuralgia constantly for which I have been given more painkillers.

Not looking forward to any watch and wait scenario if I am constantly in this state.

[sclb]

Hi,

Sorry about your diagnoses. Trigeminal neuralgia is very difficult to cope with; the AN maybe a little less so.

That is definitely a small acoustic neuroma. It would be very optimistic to expect such an early contact from the specialist, unfortunately.

Are you sure your trigeminal neuralgia is caused by the AN? Which region supplied by the trigeminal is jangled? Do you know if it is stretching or distorting the trigeminal nerve's entry into the pons? The MRI report would usually comment on that. It is very possible that either treatment modality could worsen the neuralgia.

Are you on the right sort of analgesia for neuralgia? Conventional painkillers are little use.

Good luck.

[johnwalter in reply to sclb]

HI

Neuralgia in upper and lower jaw came before sudden deafness 3 months ago, then I had balance issues which are mild but constant. All on the right side. Pain in the ear and the jaw/teeth comes and goes for a few days at a time although current bout has been 3 weeks. ENT consultant was pretty clueless sending me to the dentist, who of course found nothing. GP has given me amitriptyline which has allowed me to sleep well and codeine which I use if the pain gets bad during the day.

[sclb in reply to johnwalter]

Hi,

Hmm.. that might be referred inner ear pain, going by the distribution, rather than trigeminal neuralgia, so could be related to the AN. Is the character of the pain definitely that of nerve pain? Electric, burning, tingling, hard to describe (=nerve pain)? Or more achey (=referred pain)?

Dentist not as daft as it seems, needed checked out/ excluded!

Classically, an AN will cause numbness across the cheekbone if it distends the trigeminal nerve. However, they don't all go by the textbook....

Is the deafness total, or high frequency sounds?

Yes, amitriptyline is good for damping-down nerve pain and for sleep. Codeine doesn't help nerve pain to any real extent, but would help referred inner ear pain... and cause wooziness, constipation, and can be addictive...

[johnwalter in reply to sclb]

Thanks. On the first onset of hearing loss I had the achey pain in the jaw along with a day when my eye was not blinking, I continually have a metallic taste sensation. I cannot sleep on my effected side. Fluttery nerve tingling in my lips and around the eye comes and goes.

I have had three periods lasting a couple of weeks where all the symptoms get worse and I have stabbing pains in the teeth and the ear, which did not respond to standard painkillers. They have been stopped with amitriptyline, however, this still left me with severe aching pains which were stopped by the codeine.

The deafness is total in the mid frequencies. After the recent bout of pain, i have abandoned my hearing aid because I can no longer hear any difference even on its highest volume. I cant even hear the beep it makes when it comes on.

[sclb in reply to johnwalter]

That would be a very impressive set of unusually abrupt onset symptoms to be attributed to such a small AN, and possibly affecting Vth, VIIth, VIIIth and IXth cranial nerves. Admittedly the anatomical area is small, but the AN is really not big. I guess the specialist you're waiting to see would be either a neuro-surgeon or radiation oncologist? Does your GP think it might also be worth running your symptoms past a neurologist, as it's all a bit atypical?

What do you think?

[johnwalter in reply to sclb]

Yes at the moment everyone involved seems very puzzled. At least we seem to have got the pain under control.

[sivakumarmsc]

Hi John, yes size does matter too. As you may have researched and learned now that AN is benign and tumour it self is not a problem and it is the space that it occupies and pressure that it exerts on adjacent critical nerves that poses problem. A 5MM AN is very small and does not pose any immediate threat or emergency. Doctors may choose to wait and watch with annual scan to confirm that it is growing before planning any intervention, some ANs may not grow and may not need any treatment.

While this is in general, MRI will show impact caused by your tumour on different nerves and possible correlation if any between your trigeminal neuralgia and tumour, and you may plan your course accordingly.

With my MRI and position of my tumour specialist could explain me various symptoms that I was facing and discussed possible improvement post treatment. And Gamma Knife is unlikely to alleviate the symptoms immediately as it takes some time for tumour to shrink, I had a partial resection surgery and gamma knife , while my symptoms have reduced significantly, I still have some bad days. But my tumour was significantly bigger than yours at 3CM+.