Is this what radiation therapy is called?
If it is, what does or did this mean for you? What happened at treatments? How long were you treated for? Can you tell me everything you know about it! I like to be prepared!!!
Gamma knife is one name, the other common name Iāve heard is cyber knife. From a google search: The Gamma Knife and CyberKnife are two different technologies used to deliver stereotactic radiosurgery, a type of treatment that uses precise beams of radiation to destroy tumors of the brain, head, and neck, and to treat other neurological disorders.
I have found gamma knife to be more commonly spoken about and was the only option available for meā¦
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Hi Mrs F2157
Yes, I had radiotherapy, (gamma knife). I had two treatments 6 months apart at Barts hospital London. I had to be there for 7 in the morning where they got me changed and fitted the halo, itās a bit uncomfortable having this done but itās over in minutes. Then they took me straight in for a MRI scan and then straight in for an angiogram. After that I waited for around 1 hour for them to map the route of the radiation using all the info they had gathered from the imaging scans. Because of having the angio I had to lay flat on my back for the whole time which is quite annoying !!! Then they came and told me that I needed to be in the gamma machine for 3hrs 5 mins. So back to laying on my back again without movingš. You donāt feel a thing and you get to listen to your fav music to pass the time, or even have a little sleep if you can sleep on your back. They do pause the treatment if you need anything, i.e. A drink, toilet etc. Once the treatment is over they take the halo of straight away and put little plasters over the holes on your forehead. I did have a headache through having it removed, but was fine once I had a couple of paracetamol and an ice pack. Depending on the hospital wether they keep you in overnight for observation. Barts did keep me in where they just kept checking the angio site and my blood pressure. Assuming everything is ok through the night your discharged in the morning. My 1st treatment I felt amazing the next day, no pain in my groin. I even got the train back home.2nd time I felt a bit rubbish so I went home by car. The site where the halo was attached were tender, but over the counter pain relief solves that.It has been 18 months since my first treatment and almost a year since my 2nd, I can say I havenāt had any severe side effects, the odd headache, short term memory loss and fatigue. I hope this helps with any anxiety your having. Have you got a date for your treatment?
All the best Amanda
Thank you this helps a lot. Thanks Amanda for the details of the processā¦ I like to know everything before I am bombarded at an appointment.
I googled and wish I hadnāt :((( the local anaesthetic in your head while they pin a metal frame around it?!?!? That thought alone terrifies me - more than knowing I have the AVM itself and the implications it could have if it ruptured. That sounds ridiculous I know 
Sorry Amandaā¦ No date yet. I havenāt even got an outpatients appointment as of yet. Iām really in the dark about my AVM, treatment, prognosis etc. No one will tell me anything and I may have to wait another 8-12 weeks before I see the neurosurgeon x
I have my ate for 18th may and am worried about potential after effects post op which i am told can happen at 6mths after
appointment not
Hi Sarah,
so do you not know where abouts in the brain your avm is? Mine is in my right temporal lobe and a scale 3 on the spletzer chart. I know everyone tells you try not to worry and think about it, But it is such a shock that itās the only thing you can think about. It really does get easier. I got diagnosed April 2nd 2015 and I had my first lot of treatment 28th October so only a 6 month wait. I had lots of test in between which helped the time go by. I do advise you to take your time and research the different treatments once you know where your Avm is located. I was so scared like you I pretty much took the neurosurgeons word and went straight for the Gamma knife. I hadnāt come across this site until I had started my treatment, so you are at an advantage as everyone on here are so supportive and knowledgable!!! I donāt have no regrets tho as I have had it pretty easy compared to others on the site. How was your avm found? Mine was incidental due to pulsatile tinnitus.
Amanda xx
Hi Barbara5,
Is your avm in your right temporal lobe? Mine is located in that part and is close to the motor strip. I have had two doses of gamma knife and I havenāt suffered any major side effects as of yet!! I do get the occasional head ache though. I think Iāve had 2/3 migraines where my vision went funny but paracetamol and sleep resolved them nothing to concerning thankfully. I am pretty sure that you will also be fine. Where abouts are you having your treatment? I had mine at Barts hospital London. I wish you all the best of luck xx
Amanda. Xx
Mine is in my left temporal lobeā¦ No one has spoken to me about options yet - not properly. But a neurologist mentioned gamma knife at Sheffield Hospital so thatās why Iāve researched it.
Some days I think Iām doing really well, others it all hits me like a tonne of bricks. The medication Iām on seems to be making me very tired and irritableā¦! Also I got married three weeks ago and we wanted to start trying for our second baby in the net month or twoā¦ Life feels like itās been put on hold and it annoys me. I know I should just be grateful itās been found before it ruptured though. Mine for found accidentally after an MRI scan for mumbles/tingling down my right limbs!!
Congratulations on getting married, I was fortunate enough to of had my children before I knew about my avm otherwise Iām not sure that I would of had so many children (5 lol). you are still young so you have time on your hands, Gamma knife treatment works between 3-5 yrs but it has been known on here to obliterate in shorter times. Within 6months mine had already shrunk by 10% Iām not too sure what % it is at the minute. Iām sure once you get to speak to your Nuro team they will be able to answer and reassure you of all your worries. I still have bad days when I think why me what have I done to deserve this, I think itās natural to have these thoughts, We just have to push them aside and think fight, Iām sure once you have fought this you will go on to have the family that you desire !!
Amanda xx
Hi Amanda, thank you for your reply and best wishes, yes it is right frontal temporal, I am having it done at Sheffield, being told any effects start 6mths after was what worried me xx
I had a right frontal temporal , intercerebal haemorrhage in October 2015 and have had long waits in between appointments for tests. I am very lucky though to have regained my left sided vision and balance so hope fully any side effects will be minimal, good luck with your recovery too xxx
Is radiologic shrinkage the same as gamma knife? I was led to believe it wasnāt. I just had to have my cranial vault opened and my avm snipped out, in a 14-hour operation.
mattramzzz.wordpress.com/about is where I blog about what has happened in the 30 years since my 15th stroke, exposure to meningitis and craniotomy.
I am a tutor of higher education writing, writer, editor, proofreader and blogger.
Thereby, please do not let anything bad that happens to you make you think there are no more existent options for you.
I had 3 sessions for about 45 minutes each, all three within about 2 weeks. they told me I wouldnāt feel anything but I might get some headaches about 6 months later. well I got off graveyard at 7am and went to my first treatment at 7:30. I took a pretty good dose of valium before hand because Iām clastraphobic and I just get freaked out by that kind of stuff anyways. the session itself was fine I guess just somewhat uncomfortable and the radiation smelled a little funky. I went home afterwards and CRASHED considering I stayed up all night and took valium lol. I was awoken about 2 hours later with just as bad of a headache as the day of the hemmorage! I thought it was happening again! I flipped out and called my radiologist and he said āoh that happens to about 1 in every 100 patientsā. I guess I was unlucky lol. anyways, they gave me some pain pills and I basically lived on them for the next 3 months because my headaches were so bad. they also gave me a steroid for brain swelling and that seemed to help. eventually the headaches subsided after about 3 months and I got off the narcotics. I still get the occasional migraine. but itās been 5 months since my last session and Iām feeling pretty normal now. I wouldnāt freak out if I were you though because they told me that my AVM is in a very sensitive part of the brain. And again they said that only happens to about one in every hundred patients. even if you do experience what I did it wasnāt that terrible at least Iām alive lol. I seem to take that perspective on everything now since my hemmorage lol. I hope this helps lol good luck
My AVM was grade 6 (large & inoperable)ā¦measuring 6cm x 7cm in my right frontal lobe. I found out about my AVM after a routine scan was done due to a car accident I was in.
After meeting w MANY neurologist/neurosurgeons I decided to put my future in the hands of the Mayo Clinic in Rochester, MN. Once I met w the Doctors at the Mayo I was given hope and MANY options. I chose āstaged Gamma Knife radiationā. Due to the size and location of my AVM, surgery was too risky.
I found out about my AVM on March 14, 2013ā¦ had 3 rounds of Gamma Knife (05/2013, 10/2013, 01/2013) because Gamma Knife is typically used for smaller AVMs. Each round they focused on a different area of the AVM and was in the hospital for, at most, 12 hours each round. They would fit the head frame, which is the most uncomfortable part of everything, complete the MRI and angiogram to map out the target locations, and then the radiation was administered for 45 min- 1 hour each time.
Iām the side effects I had include some numbness where the pins were located, tired from the radiation, and some headaches due to the radiation working which caused some swelling on my brain. I was put on steroids for a couple of months but everything passed.
As of December 2016 my AVM was completely obliterated. I had huge success early on as my AVM was ānear complete obliterationā within 1 year of completing my first round.
I had two separate cyberknife treatments in 1998 and 2001 to treat a small but deep seated AVM in my thalamus. The actual treatments lasted about twenty minutes and were not painful but having the stereotactic frame screwed into my scalp was briefly very painful.
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Hi Barbara5 & Mrs F2157, there is nothing to worry about the process you go through for radio surgery (Gemma knife). Itās
exactly as Amanda described. I had mine done eight years ago in Sheffield hospital. The staff and the treatment I got was excellent. Went in on a Friday evening and was out again at 8.30 Sunday morning. Walked down the road from the hospital to Marks and Spencerās and did some retail therapy. Flew back to Ireland that evening. Donāt be anxious as you donāt feel anything your listening to the music and itās over so fast, the doctor tells you everything he/ she is doing. Just have someone with you so you have someone to talk to between procedures. all the best. Cheers Carmel
HI
I had Gamma Knife radiation in March this year after a bleed on the brain in November. My surgeon in Derriford Plymouth recommended me to have radiation rather than open surgery which I jumped at. The thought of surgery freaked me out. I had mine done at UCH London on 8th March. The helmet freaked me out so much I couldnāt stop shaking but that said I am glad I had this treatment. I had the helmet on for most of the day because I had an MRI then Angiogram (had to lie flat for 4 hours after) and an hour of radiation. You donāt feel anything while the radiation is being done but do have a massive headache when the helmet comes off which is calmed with liquid paracetamol. The back of my head did bleed quite a lot from the pin sites where the helmet was attached but they heal really quickly.
I have since carried on my life as normal with no side affects at all. I have been told that there is 1% chance of a bleed in the first 6 months but to be honest I have put that to the back of my mind and donāt think about it.
I have read some reviews that the side effects donāt kick in until after 6 months! Well I hope they donāt because I feel great at the moment and would defo recommend.
Good luck and try not to worry. It is far better than surgery. xxx