Waiting time between clinics - Acoustic Neuroma ...

Acoustic Neuroma Support

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Waiting time between clinics

Angelrise profile image
3 Replies

Hi

Waited 2.5 years for appointment with ent.

Told December 2018 might have AN by consultant (Had no idea what it was)

MRI confirmed mid January(1.8mm).

Waited till March 20th for confirmation.

Told had to move hospitals to a special clinic in The Royal in Belfast.

Now on anther waiting list to see what will happen next( estimated waiting time 8 months).

Originally told I had to have MRI every 6 months but looks like this might be now over a year away.

Have all usual symptoms,fatigue being the most annoying.

Should I pay privately to get a 6 month update or just wait it out?

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Angelrise profile image
Angelrise
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3 Replies
drdeanbellavia profile image
drdeanbellavia

Angelrise:

Are you sure it was only 1.88 mm and not 1.88 cm (18.8 mm)? It is doubtful that they could even see a 1.88 mm AN on an MRI, and it would pose few, if any AN symptoms, if only 1.88 mm.

If it IS 18.8 mm (check it out), you probably need gamma-knife, etc., radiation surgery to remove it before it gets any larger, requiring invasive surgery. Another MRI would be part of the radiation surgery and you would see how much it had grown.

Bottom line, if you already KNOW that it is 18.8 mm, you don't need an ENT. An ENT is the first step in the process of identifying the need for a MRI.

The next step is to seek a surgical solution to the situation, which does not involve the ENT. You should contact a radiation surgery facility in your area to plan your next step.

Dean

Angelrise profile image
Angelrise in reply to drdeanbellavia

Sorry it 18mm in January.

redday64 profile image
redday64

Hi Angelrise, I am sorry that I can not advise you if you should pay for private treatment as I am still learning about AN plus I have no knowledge of private healthcare. I was also diagnosed in January 2019 and was also told that I will have a scan every 6 months. I really hope that you receive the appointments and treatment that you need without any more delays,

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