Thursday, 13 December 2012

What to say next time I see the Neurologist?


My next appointment for a follow-up MRI has arrived  ..... the scan date is 15th January 2013.  I will certainly be glad to have it done so that, hopefully, my mind can be put at rest regarding possible further growth of either Feckit or Fuss. Meantime I am getting my thoughts in order as to which symptoms/problems are the same as before and which are new/changed. It's best to have them sorted out in advance as once in the consulting room my wits seem to desert me and I forget everything I meant to say!!!!

The following are problems that remain much the same, or have changed only a little:

Headache/nausea
This is comes and goes variably throughout the day, but seems to be made worse by lying down. I always go off to sleep quite quickly but wake between 3 a.m. and 4.30 a.m. tossing and turning with nausea and a dull, squeezy kind of headache.

Difficulty with words
I find that I cannot think of the word I want to say or write. This happens all the time and I often have to just give up trying to say or write whatever it is. My friends are very good about it but it is an embarassment.

Poor Memory
This seems to me to be more than just the short term memory loss that comes with ageing! I sometimes find that there are whole chunks that I should be able to remember but I can't. John is always saying "but you must remember that, - you know, it was the time when ...." but it's no good I just cannot recall whatever it is. The occasion could be last week or ten years ago, length of time does not seem to have any bearing on it!

Scalp tenderness and transient tingling and numbness of face and lips
The scalp tenderness is permanent but tingling and numbness only happens occasionally.

The following I would describe as new problems, in as much as they started within the last few months: 

Tinnitus
I don't know why but I have forgotten to report this to my GP ... probably because it has become part of me! ... but I have a continuous high-pitched whistle in my ears. Difficult to describe .. the nearest thing would be the sort of whistling that one hears when tuning in a radio station. I only realised I had it when one day it suddenly stopped for a few minutes .... !

Shooting pains in temples and ears
I have had these on the (L) since before diagnosis but am now getting them in and around the (R) ear occasionally as well.

Left-sided tooth pain 
This started in June/July and was particularly bad on my trip to UK. The pain is excruciating in a bad attack. However, increasing Amitriptyline to 30mg at night seems to have reduced both the number of attacks and the ferocity! My dentist has checked out my teeth and can find nothing, and investigations for Giant Cell Arteritis as a possible cause proved negative.

Visual disturbance
As I wrote a few posts back, the "falling rain" is less obvious than it was at first. But I can still see it quite clearly under certain lighting conditions, both indoors and out!

However, all my neurological tests/signs seem to be OK .... no fits, no staggering, eye movements, reflexes and dementia test all normal so far. So no doubt I am going to feel an idiot if and when I get to discuss them with the specialist!



Sunday, 2 December 2012

One thing or another?



The good new is that all my blood results were normal and the histology on my temporal artery biopsy was negative. Thankfully that means that I do not have Giant Cell Arteritis!

So what does that mean about my recent symptoms of worsening facial tenderness and attacks of shooting pain in my rear left molars? In fact these symptoms are apparently compatible with Feckit being a petroclival meningioma


"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. Foramen magnum meningiomas grow near the area where the spinal cord connects to the brain and can cause headaches, or other signs of brainstem compression such as difficulty walking."

In one follow-up study of 168 patients over a 21 year period, Kano et al identified 12 patients who had trigeminal neuralgia in association with an ipsilateral petroclival meningioma. So the new symptoms need not necessarily indicate that Feckit is growing any bigger!

Tomorrow I am having the sutures out and I will ask for a 'weaning off' regime for the Prednisone. I am also going to request a referral back to neurology ....  as it is almost two years since I was last seen.