Hi,
I've been reading the posts on the forum for the past couple of weeks and thank you so much for the information. I've been so impressed with the support and generosity of people sharing their experiences.
I've had the results of my MRI (without contrast, I'm in the UK and they don't seem to use it often, although the scanner was 8 years old) and it has been confirmed 1.4mm x 10mm x 8mm or 1.8mm (I was a bit shell shocked when my ENT doc rang so not sure about the last measurement). It is into the cerebellopontine. I'm awaiting a copy of the report for more details.
I found it helpful to read people's symptoms when I was comparing mine before diagnosis, so I'll list my bunch for the record. My symptoms have been 24/7 dizziness and imbalance for the past 3 months, now with nausea and worsening tinnitus whooshing sound, and full feeling in my left ear, very little hearing loss, occasional left sided facial twitches and shooting pains around ear. The dizziness/balance has got gradually worse and I don't leave the house unless I have to as I feel like I'm drunk and am bouncing on moving pavement. I also have a fast pulse rate.
Three years ago in 2009 I had a numb feeling around a blocked left ear on waking. This lasted for some months, but it eventually stopped, oddly after an unsuccessful ear syringe for wax. I was a singer in a band in the nineties and used earplugs in the left ear to be able to hear myself over the loud PA systems in London venues. Probably unconnected.
For the ladies out there, I'll add that my symptoms started after I reluctantly took a 2 week course of progestin tablets for abnormal peri menopause symptoms, prescribed by my gynaecologist which resulted in traumatic blood loss (another story, now put on hold, whilst I sort the brain out ). But that could be completely coincidental, although I've read a few posts about possible hormone links and some research on hormone receptors in AN tumours.
Being in the UK I now have to wait for an appointment on the NHS with the neuro and ENT surgeons who do the AN ops in Bristol at Frenchay Hospital, the nearest centre to me. They only hold the AN clinic once a month so could be a long wait.
As my dizziness and tinnitus have worsened in the last month I am concerned if this is a sign the tumour's growing and pressing more on adjacent nerves? Nausea is a recent symptom as is a queasy tummy. But then I'm worried sick. The doc suggested stemetil (prochlorperazine) but it is a dopomine antogonist with side effects, so I'm against that.
I've read some of the surgery vs radiology options and am pretty scared and confused, especially about not always resolving the dizziness/imbalance. It seems radiotherapy does not address balance problems so probably not an option. I could live with loss of hearing in the left ear but am concerned about post treatment facial problems and headaches, leaks etc. Aren't we all :0)
So thank you for reading this rather lengthy first post. Any comments on the symptoms, size of the tumour and treatment option/experiences would be gratefully received. I fear I never get my balance back? I think the team in Bristol prefer the retrosigmoid approach. Wikipedia lists disadvantages as:
The retrosigmoid approach may require cerebellar retraction or resection. Manipulation of the cerebellum provides opportunities for postoperative edema, hematoma, infarction, and bleeding.
Increased incidence of cerebrospinal fluid leak occurred in some series.
The retrosigmoid approach is associated with greater likelihood of severe protracted postoperative headache.
The highest incidence of tumor recurrence or persistence occurs with retrosigmoid approaches.
Many thanks
Alison
