Newbie awaiting an MRI: Hello, I have... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Newbie awaiting an MRI

CG55 profile image
CG55
19 Replies

Hello, I have just had a consultation today (Audio Vestibular department) following a hearing test I booked last year due to worsening tinnitus and slight hearing loss at 37yrs young.

I was confused when the consultant said he would like to do an MRI and a blood test.

Me being me, I started googling the reasons for this 🫤and I now have some knowledge on Acoustic Neuroma etc.

I stumbled across this site, and read through some of the posts.

I am feeling a bit apprehensive about the MRI and results, but, I am somewhat reassured by lots of helpful and kind interactions amongst you all.

I am learning as I go, and will await the results…

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CG55 profile image
CG55
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19 Replies
doglover1973 profile image
doglover1973

Hi CG55 I'm going for a scan Monday after putting it off several times this year . It's time to find out even though I'd rather not know in many ways. When is your scan? All the best 🙂

CG55 profile image
CG55 in reply to doglover1973

Hi Doglover

I don’t have a date yet for MRI, hay waiting for a letter and have to book a blood test in the meantime.

Best wishes for your results, keep us posted 🙂

doglover1973 profile image
doglover1973 in reply to CG55

Hi CG55 Thank you. Still waiting. Have you got a date for your MRI yet?

Kristyll profile image
Kristyll

Once you have an actual diagnosis Km sure it’s better to know exactly what you are dealing with good luck

CG55 profile image
CG55 in reply to Kristyll

Thank you Kristyll

Kristyll profile image
Kristyll in reply to CG55

It is easier to know definitely, and you are very welcome. I wish for you the best outcome x

SJa2020 profile image
SJa2020

All the very best. When is the appt? Hopefully it will go well. As someone else has said already, it’s best to know for sure.

I was in a similar situation to yours with an A&E medic saying it’s this & writing it on my form too! Dr Google gave me loads of info. And I joined this group where they have been so supportive. (If you have balance issues there are exercises here)

After MRI (taken outside) and lots of time later found out otherwise. So yes don’t worry yourself needlessly. Google ways to relieve the symptoms if needed. But yes hopefully things will be well main thing you will know what’s causing it. And the trained professionals will decide on the best next steps.

All our prayers & best wishes - we’ve all been there. (From this site)

CG55 profile image
CG55 in reply to SJa2020

Hi SJaI haven’t been given a scan date yet.

My consultant was very nice, he actually told me I have a cleft palate which hearing loss can be related to.

In all the years I have been to see Dr’s, told to open wide and say arrrrghh, I never know about the cleft 😯

I’m pleased to hear you received good results

doglover1973 profile image
doglover1973 in reply to SJa2020

Hi SJa2020 Can I be nosy and ask what caused your symptoms - if it wasn't AN ?

Pinkrose1 profile image
Pinkrose1

Good that you are having MRI and hopefully your results will be good and rule out AN. Stay positive and try not to overthink things, it's easy done as we often imagine the worst while waiting for scans but whatever the results you will be OK, i'm a year past surgery and enjoying life! :-)

CG55 profile image
CG55 in reply to Pinkrose1

Hi Pinkrose

Yes our imagination can run away, all of these comments are helping me to remain positive though.

I’m glad the surgery went well for you, did you notice any improvement afterwards?

Pinkrose1 profile image
Pinkrose1 in reply to CG55

It definitely has taken the pressure off in my head, the tumour was pressing on the brain stem and restricting the fluid around the brain. it felt like my head was going to explode with the intense pain and pressure in it, i no longer lose my vision now which was happening every day. Before the surgery i had got to the point of not being able to move about even in my house because movement made the pressure worse and there is so much difference now, i go walking 30 mins every day to keep my stamina up and have no problems with head pressure, only very occasionally and it passes quickly. Not lost my vision once since. Happy days! :-)

SJa2020 profile image
SJa2020

Hi ya. Well then it maybe the cleft palate causing it then! Keep an open mind & if it scares you, don’t look at Google. I like knowing all my options - good & bad. All the best!

SJa2020 profile image
SJa2020

@doglover1973 - long story short - it was caused by Covid flaring up a neurological thing I already had but which had been quiet for 20+ years. So I was getting the pain, symptoms etc of having a tumour but caused by the nerves not a tumour! But learnt a lot about it all now. CG55 you are lucky to get the MRI appt consultant here Didnt later got it via my other specialist. TC all & all the best

levelslass profile image
levelslass

If it is confirmed as an AN then depending on size would recommend you don't have surgery. I had FS R T fractionated stereotactic radiotherapy at Royal Marsden for 2.8 mm tumour in 2005. Never regretted my decision. Kept tiny amount of hearing on AN side. Lots of vestibular physio for balance and no regrowth.

Blappers profile image
Blappers in reply to levelslass

Hi levelslass, was your AN 2.8mm or 2.8cm? I have heard that SRS is effective for smaller tumours but not particularly for larger ones, so just confirming.

flappers profile image
flappers in reply to Blappers

I know you’re asking levelslass but I’ll butt in! Mine was 2.5cm … (25mm) usually they offer radiosurgery for AN tumours up to about 3cm (30mm), even larger at times, depending on the position. I was given a choice of either full surgery or radiotherapy given in 3 doses and I went for the less invasive option. I won’t know if it’s been successful in stopping growth for some time to come but it was relatively straight forward with only a very very few side effects so far.

Kristyll profile image
Kristyll

I propose you get a definite diagnosis first, honestly it makes it easier knowing what you are dealing with. Good luck.

Tlflom profile image
Tlflom

Look into Cyberknife. Not invasive. Get a consult or second opinion.

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