I’m a 23 year old male from the Uk undergoing Gamma Knife Surgery for my large right sided AVM around 50.63cm3 . I think thats a grade 5
So originally it was discovered I had an AVM back in Sep 2021 after a random and first episode of sensory changes/ first seizure. This included weakness and numbness in my lips, down to my left hand , arm and legs. (Only left sided). I was then rushed into hospital with severe headaches , nausea, sickness and numbness where a ct scan showed I had an AVM since birth. I was reffered to a specialist hospital to discuss whether gamma knife surgery was appropriate in which they decided yes. So upon referral, angiograms and further imaging it was shown to be quite large AVM, the largest they have worked on which means surgery and other options are not safe and pose a higher risk. So the treatment was initially going to be done in 4 stages so far I have had two treatments and a further two due with 8-10 week intervals in the hope of obliterating the AVM.
I had my gamma knife treatment in July and then October
My AVM luckily has never ruptured, bled or suffered any sort of haemorrhaged. I had my first treatment and had side affects such as brain edema which has been 7/8 times and been prescribed on dexamethasone (steroids) to reduce brain swelling which seems to constantly be returning once my steroids finish. However I have had my second treatment now and again I have suffered brain swelling in the same area as the ct scan shows no difference however I have now also suffered from a stroke/ neurological deficit in December . Can anyone tell me what the best course of action is to take as I was aware of the possible risks and side affects but suffering a stroke/neurological deficit whilst undergoing GKS is this normal or is there worse yet to come as I had been told that if any major complications were to arise they would be in the latency period after my treatments were completed. I am significantly worried about an haemorrhage or bleeding especially when I have never had an episode as bad as this.
Also in regards to the stroke I have had this for over 3 months and don’t know if the weakness, unsteadiness in my legs and arm is permanent as randomly I experience burning and tingling in my affected part of the body.
Please could anyone provide any information. I understand everyones body reacts differently but has anyone faced anything similar…
Also Anyone who has experience with Avastin and radiation necrosis for brain swelling
I was due to go for my 3rd treatment however after reacting so badly to the gamma knife for my grade 5 avm I have lost complete strength and weakness in my left side and am now coming off dexamethasone I am losing my complete left side day by day in terms of hand movement, leg movement if anything becoming pretty much stiff and paralysed I have been diagnosed with radiation necrosis and left hemiparesia and its not safe for me to stay on dexa as i have been on and off it for around 8 months. MRI , angio shows official diagnosis as radiation necrosis and the only option is to let it go down naturally which will take 12-18 months and with my current symptoms this will end up getting worse…. I have been offered Avastin to reduce the swelling if it gets approved has anyone had or used this and has it worked to reduce brain swelling and improve my weakness ? . As I have been told I will regain strength and functionality once the swelling has gone but won’t this damage be permanent if left untreated is this true ? Any advice or help would be appreciated. Ideally if your in the uk and know of any avm specialists I would appreciate this as travelling to another country is not an option.
Hi @Awais23 and welcome! Let me say I’m no doctor but I wrote about my circumstances partly as therapy and partly to help others. What I would suggest is that you contact your support team be it your friends, your family, your doctors, and others in this group! You’ve got a life to live and an experience to share with others! I wrote mine in a book because I knew that I had experienced something few live to tell about but I hope you can find a therapeutic avenue to share the hope you have been given with others! Blessings as you continue, grace & peace as you go!
Welcome, glad you found us but too bad you were looking! I read your story so far and wow, the journey is the tough part for sure. I can only pass on my experience, I had a bleed that caused my AVM to be discovered, and was out on Dexamethasone for the swelling. It was successful in reducing the swelling. I had one dose of gamma knife 6 months later, had a little swelling at 6 months, some ice pick head aches but did not need medication. My AVM was obliterated, was a grade 2, confirmed about 28 months afterwards. I have had one seizure since, that was this year.
I made all my decisions based on risk, and a main driver not wanting to have another bleed. That is what scared me more than anything. I know swelling is caused by the radiation, and many of us gamma folks experience it to various degrees, many need medication. I am not a dr by any stretch of the imagination, but the amount of radiation they need to apply for success to yours in multiple doses would be well beyond what I received, no comparison. Did they predict this type of reaction? We have had a couple members here experience radiation necrosis. If you hit the magnifying glass on and query same, you should get some hits and see what steps people took to limit the effects. We have a member who pops in from time to time amcoffey who had a heck of a battle with swelling from cyber knife. I believe she had success in a variety of alternative treatments such as hyperbolic chamber. I might be mixing up some forums…
There are several chats in that respect, I haven’t seen here here for a bit but you can message, she was always very helpful to all. I wish I could be of greater assistance/information, Take Care, John.
You are, without doubt, going through some tough stuff. Grade 5 is grade 5, after all.
My understanding is that the radiotherapy is focussed on removing or reducing your stroke risk. Some patients are recommended something other than radiotherapy to attack their AVM because the risk of rupture while the radiotherapy takes its time to work is too long: they would be likely to have a rupture while waiting for it to work. In your case, there may not be any other option to address your AVM than the radiotherapy and it sounds like it has had a rupture anyway. I don’t know that you can attribute that TO the radiotherapy, rather that it has taken too long to close off part of your AVM and it has ruptured meanwhile.
So to answer your question “Is it normal”? the aim of radiotherapy is to close down the AVM and avoid rupture but there is always a risk of rupture over the period that it is making its changes. As you’ve been told, it is the period between treatments that really starts to do the work and (from reading people’s stories here and what they’ve been told by their doctors) it seems that things start to have an effect about 6 months post zap.
I would ask your neuro about the ability to fully recover from the stroke: they will have a decent view of what has been affected. I think it is fair to say that recovery from a stroke is pretty common but it does take a lot of time: likely months or years rather than weeks: and it will very much depend on the damage that has been done. Three months is still very early in terms of recovery from a stroke.
By the way was your December stroke described as an ischaemic stroke or a haemorrhagic stroke? It seems to me more common for people in this community to have a haemorrhagic stroke, so that is what I am talking about, and avoiding a haemorrhagic stroke is what having the radiotherapy is all about. If you’ve managed to have an ischaemic stroke, I’d say that seems uncommon to me and could be due to the radiotherapy closing something off more than would be wanted. (Note: I’m not a doctor, just spent too long reading people’s stories on here, so I’m going with gut-feeling, not any medical expertise!)
I’d say that there is a risk associated with the radiotherapy that it zaps more than is intended and that it closes off more than necessary, which could lead on to deficits. There are risks associated with each method of treating AVMs: each has the ability to damage some tissue or kill off some tissue. There is no wholly safe way forwards with these things.
Its good to have you on board and I hope we can help you a little along the way.
Hi Ava, I must admit I was overwhelmed by the information/technical aspects of your situation. But I do feel you, naturally, have some emotional pain and fear. That’s something I can relate to because my AVM bleed/2 craniotomies/seizures started at age 14.
So, I just want to welcome you. Also I want to let you know that this site is good for emotional support, not just technical stuff. Best wishes, Greg
Hi Awais. Pleased to meet you and sorry to hear you’re having a few troubles. I’m in the UK too. To be honest I can’t help much as my AVM is untreated. I have a Grade 5 (I think) as well and its in a tricky spot. So GK would be my only treatment option and they’re not even sure that’d do the trick. I try not to ‘what if’ about the future cos if I do its a bit scary. In 2016 I had a stroke ‘mimic’ although the docs couldn’t say if it was AVM-related or not. I basically felt like I’d had a stroke (and had the symptoms) but an MRI didn’t show any blood clot etc. It took some time but I did make a full recovery. Hopefully you will too. Very best wishes for a successful outcome.
My AVM is located in my occipital lobe I to suffered brain swelling for all of 2020 and was on high doses of dexamethasone. I’m a diabetic, so it was terrible. I had to do insulin shots. I found an aneurysm inside my AVM, because of the high blood flow, and I lost all peripheral vision and some of my vision is permanently damaged. It’s a rough road, but hang in there you’ll make it. God Bless.
Wow you really have landed in a bad spot. Keep going with treatment and the continued side effects versus do nothing and risk a bleed.
I didn’t know I had an AVM until it ruptured in 1990. Later I had surgery to remove it and I’m still alive now, usually pain free and living independently.
It was a very difficult recovery but the NHS staff got me there. I’d suggest trusting their advice and hope your body can fight the AVM
I was warned of radiation necrosis before gamma knife treatment in Toronto . I haven’t had necrosis but they told me they had an oxygen treatment if necrosis occured before I had gamma knife. Sorry to hear everything is going bad, hope things improve.