Consultation for gamma knife

[Cwk123]

I have a consultation this friday at queens square for gamma knife. I beleive i will be under the care of neil kitchen. Feeling rather anxious, because i was hoping that that i could delay any treatment, but unfortunately i was told my tumour has increased in size since my last scan a year ago. My An journey started 2 years ago with vertigo and then hearing loss and tinitus. My tumour is in 2 parts, the top part is sitting in the ear canal and the bottom part is sitting close to the brain stem. The bottom part has apparantely grown from 6mm to 12mm, so doubled in size. At the moment i dont feel i have any control over this situation and i can only trust that the doctors know what the best option for me is. Just feeling really anxious about possible side effects . Im 48, work full time in a restaurant and have a 14 year old son. Can anybody offer any reassurance x

[Bob36]

I’m 48 and female too. Have a 14 year old and an 18 year old. I am also under Neil Kitchen at Queen’s Sq.

I had Gamma Knife at Queen’s Sq in 2014 after my AN kept growing. I now have checks every 2 years to see if there has been any further growth - so far so good, it’s stable, no change. Mr Kitchen and his team were excellent. My kids were younger back then and the choice was full brain surgery (hours of surgery and then days in hospital and weeks of recovery) or Gamma Knife (one day, bit tired for a few days and a headache). No choice in my mind. For reassurance I would say that you do have to trust the doctors. I did, and do. They have seen hundreds of ANs, this is their everyday. They recommended Gamma Knife to me because it was a good choice. The recovery time and the fact I had young kids was a huge factor in my decision. I also have kept my hearing to some extent. With removal I was told my hearing would be gone on that side as they would have to sever the hearing nerve. I do have bad tinnitus, but wear a hearing aid that helps a little. I have vertigo, but it tends to be in situations when I’m unsure of my footing - heights, narrow walk ways, near water!

All in all, I’d say try not to worry. When I was first diagnosed , I thought the worst, but it’s just something in the back ground for me now - and I’m saying that as someone who suffers from anxiety. I know other people might not have had the same experience, but my care at NHNN under Mr Kitchen and his team has been faultless.

Sorry for the long reply, just wanted to reassure you. Good luck on Friday. Take care.

[Cwk123 in reply to Bob36]

Thank you for replying and for reassuring me. Im feeling more positive knowing i will be in good hands.

[GGourmet]

Hi there, hopefully I can bring good news.

I was treated there by Neil in June 2022. Great team and you are in good hands.

What would I say about my experience.

1. Take a photo of yourself with the frame on - for me, I was saying to myself that I was in control, not the tumour.

2. name your tumour. I felt better giving mine a name. Mine was called Cedric. It gave for much laughter especially its link to Harry Potter.

3. Know what pain killers you can and more especially cannot take. It didn’t occur to me that I have an intolerance to codeine so I never mentioned it. If you find codeine never gives you pain relief you might be in that cohort. The pain killers are used for when they take the frame off, everything else is pretty painless. You will experience pain for about 20-25 minutes.

4. First surgery of the day usually commences at 7:30, so perhaps best to stay at one of the nearby hotels on the previous night. Travel with someone who can be with you when you leave.

5. Deterioration in hearing. In my case, my hearing deteriorate, dramatically so around 9 months on but I understand this is typically around 6 months after surgery.

6. At around 9 months after surgery, book an appointment with your GP for a hearing test/hearing aid referral on the NHS. You should plan to have the hearing test around 12 months after surgery. Neil, I’m sure would elaborate on this but this is based on hearing usually reaches its worst point at 12 months making this the ideal time to test and programme a hearing aid.

7. You might find that a hearing aid bought privately is better than the NHS one. I’m on trial with a Widex which is about £2,000 for the impacted ear. The NHS one is good but doesn’t offer the focus in feature of the Widex which means you can get the hearing aid to focus in on front, side or behind, depending on what you want to listen too - invaluable for me as I’m often in groups at meetings and in restaurants. If you are at Queen Street, your follow up might be at OneWelbeck, once Neil has discharged you back to ENT.

I hope that helps