Gamma Knife - Sedation?

[JDN57]

Out of the blue last Friday I received a telephone appointment with my consultation (still haven't seen him face to face) and told the 3rd scan in a row has shown an increase from 11mm to 18mm and therefore can now have treatment. Told to wait for an appointment. Yesterday another call to book me in for Gamma Knife on Friday 14th June!!! I was frustrated by the long waits between scan and results but now everything seems to be moving rather fast.

I asked if I would be given sedation during the treatment as I have a problem laying on my back and getting restless legs but told I would be fine as it only takes 45 minutes. Just want to know how the experience was with those who have had this procedure.

Thanks Jane

[MattBusby]

Hi, I was diagnosed with the same Feb2020, watch and wait, the next scan showed that it had grown to 18 x 13 m. Radiation therapy was recommended, 15/3/22 Single Fraction radio surgery , ( highly targeted radio surgery ) I was lay on the table with a head mask for 30 mins, no problem, very straight forward. Next scan in 2023 showed that it has shrunk by 1/3. My symptoms are Tinnitus, Deafness in right ear, fatigue, and some balance problems. I joined the British Acoustic Neuroma Society. BANA. They are very helpful, Salford Royal were great, they tell me to pace my self, I am fine in the morning, but become tried as the day goes on. I sometimes go to bed at 9.30pm.

I also find that I am very emotional now. But having said all that I can carry on with my life in almost normal way. Good luck.

[Crocheting21]

Hello, I had Gamma Knife in early February in UCLH Queens Square London and it was fine. The appointment was early morning so to avoid stress I spent the night before in a hotel nearby. The staff at the Gamma Knife Centre were very understanding and they explained every step as we went along. I had a friend with me which was great as there is a lot of waiting and our chitchat kept my mind off what was happening. First I was fitted with the frame which was uncomfortable but not unbearable. The frame stayed on for the rest of the visit. I then had an MRI scan wearing the frame. This was about 35-40 minutes. I had a cough at the time but by relaxing and pretending I was elsewhere I managed to stay perfectly still. They do make sure you are comfortable. Then I had to wait sometime for the ‘prescription’ which turned out to be 50 minutes of gamma ray. When it was my turn I had the treatment. It’s a strange sensation as the frame takes the weight of your head. They played music to help me relax, said it wouldn’t matter if I coughed as the frame holds your head completely still. Afterwards the frame was removed. The release of pressure hurt a bit but they gave me painkillers (paracetamol). We then left taking the train home. I was a bit tired and feeling washed out for a day or so and the site on my skull where the frame sat were sore to touch, but have felt fine since. I felt humbled by the number of people involved in providing me with this treatment; they had three patients that day and said it was a busy day for them. I’m hoping not too have any side effects, I understand they can take six months or more to show. I do feel that my balance has improved slightly and hopeful that this will continue as my brain adjusts. I will not regain my hearing loss or lose the tinnitus but hopefully I will not get any worse. I hope hearing my experience helps. My best advice is to try to stay relaxed and accepting. Wishing you all the best in June.

[JDN57 in reply to Crocheting21]

Thanks, I have to be there at 6.30am and they explained everything over the phone but said every step would be explained on the day. I will think about my holiday a few weeks after!!!

[flappers]

Hi, pretty much the same happened to me on third scan, but mine was a bit bigger 22 X 25mm so I needed 3 sessions of SRS around 45 mins each…delivering 19.5 grays of radiation. A different type of mask is used but otherwise it’s very similar. You have to trust in the lovely people delivering your treatment and really focus all your attention on nurturing and soothing yourself in this run up. Do all the things that please and calm you, and by the time you have the treatment focus on it being a bit of pampering!! I pretended I was in a spa!! The whole treatment bit is absolutely fine, Drink lots of water after ( and before) and take a couple of paracetamol ( just in case the mask is uncomfortable) which I did the second and third day and it was a breeze., It is a long day, with all the fitting and getting the position of you correct etc, so maybe staying nearby if your a long way from the hospital helps. And have lovely high protein snacks and water with you. The Brainstrust offer really lovely mentoring or one to one support and hypnotherapy to help with any anxiety around procedures. But I promise you it’s no where near as tricky as you think it is. For Gamma I believe the worst bit is the frame can be a uncomfortable. Breathe, you’ll get through this. Restless legs are annoying for sure, but won’t affect the treatment, hopefully you can find something to calm this too. Let us know how you get on! The reality of it was so much better than the worry…