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Acoustic Neuroma Support

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JoanneSP profile image
JoanneSP
•4 Replies

Hi can anyone help as to how long I may to wait to hear from the ENT department regarding scans etc. I was referred 2 weeks ago by A&E who picked up my Neuroma on a scan. The waiting is awful😞

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JoanneSP profile image
JoanneSP
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4 Replies
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Karbob profile image
Karbob

Hi Joanne, everyone seems to have very varied waits. Which makes it very stressful. Try to speak to Ent secretary, where you have been referred, to see if they have an idea of when you will be seen. Hope get seen soon or someone else has a better answer. Karen

flappers profile image
flappers

Hi Joanne,

Which area are you in? Your local ENT will almost certainly refer you on to a specialist team, ( so in Kent for example you’ll come under Kings in London). One thing is for certain, because our little squatters are almost always VERY slow growing, are begnign and WILL NOT kill us, we have to get used to waiting… as often the bet best option is watch and wait, where they just monitor its growth rate and impact. In about 40 percent they never grow any more after discovery or need specific treatment other than helping us adapt to symptoms. You could contact BANA ( if in the UK) British acoustic neuroma Association or Brainstrust who have special groups and one to one support for those of us with these rare types of non cancerous tumours. Most of all, I promise you there is help and support out there, this is a shocking time for you so seek it out, you’re not alone and you really really will be okay. X 💐 Lin

JoanneSP profile image
JoanneSP• in reply toflappers

It didn’t help as the consultant in A&E said it was unlikely to be cancerous and after having breast cancer I thought here we go again ! I am in the Peterborough area. After reading you reply I feel a lot better thank you ☺️

JoanneSP profile image
JoanneSP

thank you 😊

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