Hi, I’m 9.5 weeks post gamma knife. My family are confusing me thinking the surgeons said worst side effects are 6 weeks post and I am certain they told me to expect them around 6 weeks and again around 6 months. Can anyone help clarify please! (I feel mad enough sometimes without thinking I’ve misunderstood everything!) I am getting side effects including aching starting up again today on the radiation AVM area and my speech went again this morning temporarily. I had immediate speech loss which was the worst I ever experienced which came on an hour after I came out of the gamma knife, it took about 2 weeks to resolve where as my usual symptoms are a minute of speech loss only. It was a terrifying experience and I fear it may get only worse at 6 months! My radiation was 1 hour 45 mins so they said i had a real battering to my brain and the AVM is in my speech area so it was expected. I don’t want to put people off GK so I won’t complain too much as it is an important treatment but I do think the process is made out to be much minor than it is, even by some people that have had it, is that just me?! it took me a month to get over the memories of framing pressure.
Thanks
I don’t know enough about it but reading here, it is definitely typical to get symptoms at about 5-6 months post op. If the doc said both 6 months and 6 weeks, then you’re doing that first round.
My understanding from reading here is that a bit of swelling (oedema) is often the case at about the 5-6 month mark and you should go back to hospital if you have issues.
I’m not sure that the docs ever tell us the unexpurgated version of What To Expect because it is very variable and quite possibly unhelpful to know the full range of possible symptoms and/or time frame! Having an embolization procedure seems uninvasive and momentary but I can tell you it took me two years to get back towards feeling normal again!
I’d say talk to the treatment centre and see if they have any concerns.
Lots of love,
Richard
I agree with Richard’s response. My AVM is inoperable due to proximity to essential brain structures. Docs did once ask if I’d be interested in GK. Personally though reading about all the scary deficit risks put me right off. For many people though it seems to work out perfectly well. I guess what I’m saying is that we’re all different and respond to things in different ways. Def talk to the medics and hopefully they can help you. Very best of luck.
Hi, I had stereotactic radiotherapy on my Brian (right-sided) AVM in Nov 2016 and was told it would be 2 years before they could confirm that it worked. 2 years later in Nov 2018, I had an Angiogram, which confirmed that my right-sided AVM had been obliterated. However, during the same Angiogram, they found that I had a Dural Fistula on the left side of my brain (which did not exist in 2016 before my treatment). This was never explained as to how that could happen, given it never existed before my treatment. At the same time, 2 years after the radiotherapy, I started to have episodes involving lose of control of my left arm, unable to speak and terrible heart pain followed by seizures (status epilepticus) requiring emergency admission to A&E to control it. These episodes have occurred on regular occasions since Nov 2018, and are only now easing after trying many different medications. However, the main saver has been my emergency meds which I now have with me at all times. Three times this year, my wife has administered the Buccal Midazolam, and it has stopped the episode within 30 mins (although I still have the symptoms, particularly the heart pain) until things settle down. I understand that everyone has different AVM problems, and potential solutions, but I just want to let people know that although the AVM may be obliterated following the treatment, there is the possibility that there may be ongoing, or different issues following the Stereotactic Radiotherapy / Gamma Knife treatment.
I had gama knife in 1997 yes after I had a hemorrhage from another AVM in my Brain I guess lucky to survive. I was 35 years old. I really don’t know if I had any side effects. I had aphasia and I still have it but not as as bad. good luck, Sheila.