How long after subtotal surgery can g... - Acoustic Neuroma ...

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How long after subtotal surgery can gamma knife take place ?

Steve_04 profile image

When is the soonest Gamma knife can take place after having subtotal surgery ?

April 2021 I had my tumour removed but not all of it.

9th of June they completed my MRI baseline scan. Despite me using a chat portal asking questions and being told the Id be signed of from the neurosurgeon, I then get a letter for telephone consultation in October 2021 with the neurosurgeon.

Is this cause they are thinking of doing gamma knife some 6 months after the subtotal surgery ?

8 Replies

Hi Steve

I saw my neurosurgeon for a consultation after first mri following surgery just to discuss the results. I think it’s just routine.

I now have mri every 12months to check all ok.

Last year I just got a letter saying no change to remnant tumour.

Steve_04 profile image
Steve_04 in reply to Colejoe1

Hi, thanks for your reply.

What I don’t get is , I was told in may that I’d now not be reviewed by the neurosurgeon and only reviewed by the ENT team. 9th June I had My MRI. Later in June I asked some questions on a chat portal , no response.

I have a pre booked ENT appointment to be done by telephone on 20th July.

However since my mri and since asking questions on the chat portal and being told I wouldn’t need to be reviewed by the neurosurgeon, I get a letter to say consultation with the neurosurgeon 5th October 2021.

This is exactly 6 month after my operation and by my own research is when Gamma knife after having subtotal surgery is recommended.

I’m in a difficult situation as I had to go to a hospital 105 miles away for my surgery and seems communication with them isn’t the best.

All I know is that they left some on the brainstem and facial nerve, ( despite asking multiple people at the hospital , they couldn’t say how much was left)

They told family there was complications and it was difficult to remove. 17 hours and not fully removed.

When I asked on the follow up what complications was there, I was told there was a lot of blood vessels coming out of the tumor which they couldn’t cut. Yet the letter I then received left out this information.

I feel like something is not right.

I am now 3 months + into recovery but still have Atleast a few mm swelling to the side of my face/head to the point it’s very noticeable after removing my glasses and I can see the imprint from wearing the glasses. ( nothing like this before the op)

Colejoe1 profile image
Colejoe1 in reply to Steve_04

Lots of strange things happen in the first 12months after surgery. I used to contact my specialist nurse and she used to speak to the surgeon and get back to me. The surgeon signed me off after the appointment to go through my first mri. Fingers crossed for you . It’s such a worrying time

Thanks for that. It is worrying as I was signed of then it appears ive been signed back on but I’m in the dark and when they’ve not answered me or called me with answers to my concerns it doesn’t help my mental state. I know at some point I will need to either have another op or gamma knife from the minute they told me they left some on the brainstem even though they just set up to monitor it.

Colejoe1 profile image
Colejoe1 in reply to Steve_04

ENT should also have the scan. I had an appointment with ENT before the surgeon and they also showed me the scan . Although mine was pre covid. Good luck

Steve_04 profile image
Steve_04 in reply to Colejoe1

Will somethings don’t add up. I’ve contacted the hospital today and spoke to a few people. So despite them saying they did a near total removal and them saying they know they only left a tiny bit. I’ve been told the mri I had shows the tumor over the brainstem measures 1.5cm x 1cm so they’ve either not removed enough of the 4.5 x 2.5 cm tumor I had or it’s growing back quite quickly considering my operation was only just over 3 months ago.

Colejoe1 profile image
Colejoe1 in reply to Steve_04

Hi Steve I wasn't told how much of my remnant was left they just said a cuff to protect the facial nerve and they would look towards gamma knife if ever needed in the future .

I remember my surgeon looking at a scan the day after my surgery so they will know if it's grown since surgery

Hope things work out for you. Like I said before it's such a worrying time.

Steve_04 profile image
Steve_04 in reply to Colejoe1

Thanks , it is such worrying times and unless they did it whilst I was asleep they never did a scan of me straight after the operation. However they reported and I have it in writing that they did a near total resection and stated they know they left a very tiny remnant. Later today I’ll hopefully get more clarity. The joys Covid has caused. Having to do a 4 hour round trip for a face to face consultation.

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