Hi, I’m due to have my first consultation at Sheffield for Gamma Knife surgery and they’ve said if you consent then they’ll do blood tests that day. Does anyone know how long it is between the consultation and the treatment? Can anyone tell me about the side effects - both immediate and longer term? I’ve read about the ice pick headaches but is there anything else I should be aware of?
Thanks
Hello @marieclaire12!
Welcome to AVM survivors!
I’ll let others talk to you about gamma. For contrast, in case it helps, I discovered my AVM myself and was initially referred to ENT. I saw an ENT at the end of August 2016. He referred me for “an urgent MRI” (which took a month) and then the report back to him about my AVM took me to chase it and a further month. I was then referred to neurosurgery in Nottingham (took another month) and then had to wait on the elective surgery schedule until the following April.
So if Sheffield works in any way similar to Nottingham, don’t expect things to go quickly.
How are you feeling about it? It is quite a detour in life, isn’t it? Like driving along a beautifully smooth, newly tarmacked road then suddenly turning off onto an unmade track.
Richard
Hi, and welcome. Im in Canada, so while different for sure, our public health care system is similar to yours and the timelines often are pretty consistent. I had a bleed in May of 2016, spent a few days in the hospital and then sent home to heal and let the blood clear from my head. I had a follow up MRI and then a follow up Angio, and a couple neuro appointments. It was near the end of August that GK was determined as the best course of action. I had the procedure on November 10th. So 6 months from discovery to treatment.
Treatment day was a little uncomfortable wiht eh mounting of the “halo”. Couldn;t feel much more than pressure, but the sounds were a little weird due to bone conduction. The resy of the day was smooth and I was on my way home by about noon. I had a CT, MRI and GK one right after the other. I guess they wanted to make sure they were hitting the spot! There was a possibility of another angio if they were not 100% comfortable with the images and my previous two angios.
I had some swelling at about 6 months but not to the point of needing steroids. I did experience the ice pick headaches. The first couple times scared the daylights out of me, once I realized what was happening it was much easier to accept. Always wondered momentarily if it was another bleed, but they go away quickly. They slowly became fewer and fewer and haven’t experienced one in years, likely peaked at about 6 months and were gone ny 8 or 9 months post treatment.
The thing that struck me about the whole neuro experience was the commitment and caring of the medical and support staff. They were there because they wanted to be, did there job well and with caring.
It is always good to be in the elective surgery line vs. the other line with no wait! Take Care, John
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@marieclaire12 hi! Well for my son the blood test was not my worry but all the angiograms imagings needed such as CTA, MRI A to know precisely where it is (AVM) to do Gamma Knife. Then they built his face mask . All of what I said were about one month process. The actual Gamma Knife was about one hour. No side effects during and after procedure. No headaches so far. The 2 to 3 year wait time started March 19th, 2024. Good luck to you !
ok yes the headaches are real they do fade with time, but you will notice in rainy weather they get worst but they fade with time. 2006 I had my surgery and had a few years now with limited headaches then we had some bad storms come true and they were back but left again as quick as they came and its better then the alternative.
Hey
I had treatment in Sheffield on the 3rd of May.
Between consultation and treatment was 5 weeks… they called me a day after the consultation to arrange a date.
The bloodtest was the day before the treatment and I was told this was to make sure I wasn’t pregnant. If you can I would try to have the bloodtest done the day before treatment. This makes the day of treatment smoother as you don’t have to wait for the results.
I had the ice pick headaches the first 2 weeks after, but this has gone now. I still have the occasional migraine and light flashes in both of my eyes. I was told this will go too…
I was extremely tired post treatment and slept for days.
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Hope all goes well for you and treatment will be soon! Waiting is the hardest bit
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Hopefully it’s not too long of a wait but rest assured there are many survivors here that can assist with some of your questions or concerns through their personal experiences… God bless!
Hi I had my treatment 20/7/23 in Sheffield. It was a one week for me from consultation to treatment and yes I had and still have the ice pick head aches. I also have terrible ringing in my ears first thing in morning and if I get to tired at nighttime
What I will say is the team at Sheffield is amazing and stay with you throughout the day. I wish my team at my regular hospital was as good. I wish you the very best of luck for your treatment and rest of you recovery
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