Acoustic neuroma with cysts in it

[louise60693]

Hello, I wonder if can ask if anybody has experience of an acoustic neuroma with cystic components. I am just being offered surgery for my 2.5cm friend, as radiotherapy treatment is not an option. The consultant said cystic ones can be "unstable". I can't find much info online, if anybody has any insight that would be great, thank you :).

[Grandchildren13]

I also have a cyst on my tumour ,but couldn’t tell on mri if it was solid or fluid.l have been on watch and wait my choice until June then will have gamma knife radiotherapy bit worrying if it bursts nobody seems to know .

[louise60693 in reply to Grandchildren13]

Thank you for your reply, mine are confirmed as liquid not sure how they know, but have refused gamma knife. I hope all goes well x

[Kristyll]

A friend of mine has just had a cyst removed from an acoustic but he had bilateral tumours and has NF2 so it may not be similar. Good luck

[louise60693 in reply to Kristyll]

Thank you, mine is just on the left though I can ask for more information at the pre assessment. Thanks again, take care

[earhole]

Hi

I was originally diagnosed with an acoustic neuroma around 4 years ago and was put on a watch and wait program with a check-up each year, the diagnosis was later changed to a cyst. At my last appointment It was decided that I should have the cyst drained and a shunt inserted to permanently drain it, this was last September and was told they would try and get me in before the COVID-19 2nd wave, unfortunately due to the rapid onset of the 2nd wave this hasn’t happened, and so am still waiting for the virus to be irradicated and for the theatre staff to get back in the theatre and not working in the ITU with COVID-19 victims.

yours

Earhole

[louise60693 in reply to earhole]

Oh bless you, I hope all goes well and you can receive treatment soon. Many thanks for your reply, take care.

[Bullpenn]

Hi Louise,Mine is also very cyst like my consultant has said. That’s how I got diagnosed as one popped which brought on a horrendous migraine (which I have never suffered with before) which resulted in me going into A&E and being picked up on a ct scan and diagnose by a mri.

Like you mine is large 2.7cm and I am on the waiting list for an op on the urgent one. I have been waiting 10 very long months!

Apparently I am at the top of the list but still no date.

What my consultant has said is the cyst can be sticky and can stick to your facial nerve.

What they do during the op is then use a devise on either end of the facial nerve and make sure they do not sever it and remove as much as possible.

If you have any questions ring the hospital and ask for clinical Norse assigned to you. I have two very lovely woman that I can call at any time and discuss symptoms or any questions I want answers to.

Also my consultant has said nothing of it not being stable and I have had another scan in Oct which showed no further growth. If anything because I am classed as “stable” I am having to wait longer.

Hope this helps I am in London so be wait is always longer here xxxx

[louise60693]

Hi there, thank you so much for your reply, that really helps reassure me too. That rings a bell about the cyst being sticky now! I am too being treated in London, (Kings) and the nurses there are great, I felt a bit guilty calling as didn't take in everything the consultant was telling me as it was a long day! Wishing you well, and hope everything is sorted out for us soon. Take care, Louise xx

[Bullpenn in reply to louise60693]

I’m kings to so we are probably both under the same consultant.Have you been to see them yet or all by the phone?

I didn’t call them for the first six months which I feel stupid now for not doing as they are so helpful and explain things so well.

If you need anything or any questions just ask as we are on the same boat and probably very near one another.

I have some paperwork that explains it well did they give you some? Xxx

[louise60693 in reply to Bullpenn]

Hi there hope you are OK under these new restrictions. I went in person at the end of October, and was given the option of waiting 6 months or going on the surgery list. The underlying thought is leaving it may make surgery more complex, and risk the facial nerve. Decided to be brave and go on the list, as we will be in for a wait whatever we do, take care and have a peaceful Christmas xx

[louise60693 in reply to Bullpenn]

Oh that's so kind, thank you, the paperwork seemed quite basic, just explaining the AN and a list of who does what xx

[Bullpenn in reply to louise60693]

I’m approaching it how I did Labour and nativity is best. What I don’tknow can’t cause further stress. I have been on the list since feb, I think the no date is the worst and not being able to plan to much. But no one can with this stupid Covid. Our nurse was saying they are hoping to get a surgery slot soon so fingers crossed.

I found them really lovely when I went up there. The hospital is huge though I’m used to the darenth so this seemed huge.

Have you seen on ophthalmology doctor yet. He is really lovely and really reassuring.

Xxxx

[louise60693 in reply to Bullpenn]

Oh that is the best way to view it, definitely ☺️ just had my ears checked for now. We have the problem of the worst Covid rates to contend with too in Kent, hopefully we'll be coming out the other side very soon. Take care and have a peaceful and relaxing Christmas xx

[Bullpenn in reply to louise60693]

I will try to have a relaxing one but that is very doubtful with three kids 6 and under!Merry Christmas to you and all the family xxxx

[louise60693 in reply to Bullpenn]

Thank you, you too, hope you all have a s lovely a Christmas as possible. Our 2 are grown up though still babies when it comes to Christmas xx

[musicman5]

I had an AN with both cystic and solid components that was removed in Sept. 2021. It was a large tumor(4.5cm) and I also had Gamma Knife for a regrowth 6 months later. On my last 2 MRIs there has been an area of encephalomalacia(brain softening) noted where the cyst had been.