Tuesday, 26 February 2013

what a difference a few days make!

After the elation on finding out last Thursday that the pigmented lesion in my mouth was not something like a horrible melanoma but was merely an amalgam tattoo (stain), its been a downward trip on the seesaw again!!

Over the weekend I began getting those stabbing pains in the left rear teeth again at irregular intervals. By the time I saw the oral surgeon, Justus, on Monday evening to have my stitches removed I had not been able to eat or drink all day and barely dared speak for fear of bringing on an attack!

Justus wanted the full background on this (started over 8 months ago) so I told him about the onset of the tinnitus, the start of the lighting pains in my teeth, the increase in dose of Amitriptyline from 10mg to 30mg, and how a full check out by the dentist found nothing. And how it had virtually died away after two bad bouts in August, etc. I said about the visual hallucinations that it was raining that started in November and how this had led to a temporal artery biopsy which had ruled out Giant Cell Arteritis.

I explained that since then I had only had a few very short spells until last weekend when I suddenly started with really mind-blowing attacks once more. As before talking, chewing, drinking or touching my mouth or the left side of my face seemed to bring it on.

Justus then gave my face, neck and mouth a very careful examination and found a small firm lump very low down in the left side of my mouth which he would like to biopsy (oh joy!). However, he does not think this lump is involved with the pain attacks which he says are classic symptoms of Trigeminal Neuralgia. He advised me to let the radio/oncologist know as he thinks it may be related to Feckit, and to also speak to my GP.

I duly wrote to my specialist and I saw my GP, Dave, today who phoned her to discuss. The upshot of all this is that they both appear to have agreed that it is NOT due to my meningioma which I find truly amazing considering that Trigeminal Neuralgia can be caused by meningiomas in the petro-clival region or so the literature says.


"Posterior fossa meningiomas: grow along the underside of the brain near the brainstem and cerebellum. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in facial pain (trigeminal neuralgia) or spasms of the facial muscles. 

Posterior fossa meningiomas

Posterior fossa tumors lie on the underside of the brain. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in sharp pain in the face (trigeminal neuralgia) or spasms of the facial muscles. Tentorial meningiomas or those near the area where your spinal cord connects to your brain (foramen magnum) can cause headaches, or other signs of brain stem compression like trouble walking.

"Stereotactic Radiosurgery for Patients with Trigeminal Neuralgia Associated with Petroclival Meningiomas"
Kano H. · Awan N.R. · Flannery T.J. · Iyer A. · Flickinger J.C. · Lunsford L.D. ·Kondziolka D.  Stereotact Funct Neurosurg 2011;89:17–24 (DOI: 10.1159/000321187)

The really good thing is that Dave has started me on carbamazepine (Tegretol) - a psychiatric drug that has been shown to sometimes be effective in controlling/reducing the pain associated with this kind of neuralgia. I am to take this in addition to the Amitriptyline. I am to see him for a review in 3-4 weeks time.

So it's Onwards and Upwards once more!!

Thursday, 21 February 2013

Good news day!

Got the result for the gum and jawbone biopsy ... and good news! It was an amalgam tattoo after all. Fantastic to be cleared of the worry of melanoma!

Also saw my radiology consultant about the MRI result and the queries that I had about size differences. Apparently the reported sizes vary because the MRI 'slices' may not be in quite the same place each time. So as a tumour is a 3-dimensional entity one slice may be wider or longer than another. As the differences were only 0.1cm that was reassuring to know. She said that should Fuss increase in size on the next MRI then it would need looking into, but for now the 0.1cm increase might be just because of a different view.

The specialist also suggested that we go to bi-annual MRI's from now on but I said that, unless and until my symptoms ease off a bit, I would prefer to keep to annual scans for the time being. She agreed to this and so my next MRI will be January 2014. She is unable to explain why I get these constant headaches and nausea, nor the tinnitus. Nor my memory difficulties ... but she reassured me that my brain shows absolutely no sign of Alzheimers disease!

So, all in all, an encouraging week on the health front! GOOD ...