Hi everyone,
We are extremely devastated.I dont know what to think need some insight and some success stories.My husband is diagnosed with avm through nocturnal seizure about a year ago,been on antiseizurenow. We are now offere gamma knief.Avm is in left frontal parietal region near motor strip of 3cm.Surgery is not the option beacuse of the location.We are very concerned about the GK side effects.Its really a very hard decision feels like nothing is safe.Anxiety is making me sick.Please members help me.
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Hello, I understand your anxiety fully. Personally having experienced what a brain bleed can do I would chose a treatment over no treatment. But as you probably have found out researching avmās, it is very individual. No two are the same.
I hope you have good support from his medical team. Good luck.
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Hello Aanie. Totally understand your fear as we had the same with our son Daniel. His AVM is in the same location and measures the same at 3cm as your husbandās . Initially he was to get Embolization and Craniotomy to extract it. In the middle of surgery the neurosurgeon decided not to proceed due to risk of paralysis on right side. Therefore we left Houston w only Embolization. That alone helped a lot though . Then two months later he got Gamma Knife. I keep saying this over and over again and that is that it all comes down to machine and doctorās experience. The doctors in charge of Gamma Knife included a very experienced team of Radiology, Neurosurgeon and Oncology from Houston Methodist Hospital . The machine used was Elekta Icon (precise machine). You need to do your research as to doctors experience and machine to be used on your husband. Donāt allow an inferior machine touch him as that is where risks rise because lasers used are just not pin point precise (my opinion based on research). On my son they didnāt use the screw mask but a face mask that was molded to him. My son didnāt suffer any headaches or necrosis immediately after nor 6 month mark. They did give him steroids for any inflammation but to be honest it was an event less procedure thank God. Therefore I can say my sonās Gamma Knife was successful but now we have to wait to see if years from now it will be obliterated. Do your research and ask questions to feel at ease or to move on to a different location where experience and machine are to your satisfaction . Hope info helps you.
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Thankyou so much for your detail reply.yes no doubt it extremely hard to just think normal.i am so worried about everything the more I read more I get upset.i feel completely lost not able to think then again I started reading.
We are offered Gk at Sheffield UK,they are using Elekta Esprit(leksell) and using halo. surgeon saying its very high precise but it can cause brain swelling.they discusse all the risks.we are just so so confused.They said leaving it is more dangerous. embolization is not an option as well.
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Hi @Aanie
The brain swelling is what @dageris was talking about at about six months after the operation. Typically steroids are used to try to manage that and I feel from reading round here that it is most often successfully managed.
We all understand how you both feel about this and I found that about half the time I was here at the same stage as you I was encouraged by what I read and about half the time it went the other way! So it is one of lifeās most difficult situations.
For me, I had a catheter embolization but I believe embolization can only be done where the vessels are large enough to admit the catheter, hence radiotherapy perhaps being the option most suited to your husband. However, none of the routes ahead are without risk ā in fact, we should remember that life is full of risks that we deal with every day.
This week, I have been to see my doctor for a different issue and his initial diagnosis is that Iāve a probable skin cancer. It is a matter of centimetres from where my AVM is and it seems to me likely to have been exacerbated by my time in an x-ray operating theatre but you know what? Iām still here and the way my AVM was behaving 8 or 9 years ago, Iām still better off.
It is a tough decision to make: whether to operate or not: but neither way forwards is without some risk. Your husband just needs to be most comfortable with one set of risks over the other.
However we can help you both get to the best decision, let us know.
Very best wishes,
Richard
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thankyou so much for ypur detail reply.yes no doubt its exthard to just think normal.i am so worried about everything that i more i read the more i get upset.
we are offered gamma knief at Sheffield,UK.They are using Elekta Esprit (leksel) and using halo. Surgeon said its very high precise but can cause brain swelling.They discussed all the risks.we are so confused as everything seems too risky.They said leaving it is very dangerous and embolization is also not an option as well.
Well, if the doctors are of the view that leaving it is very dangerous, then it may be a step he should consider taking. We have many people here who have been treated successfully at Sheffield (and at least one, I think, who was less successful). The radiotherapy team at the Royal Hallamshire Hospital are definitely experts. I think most people needing such radiotherapy in the UK go to Sheffield.
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Hi, and welcome. I can pass on a little of my experience for you. I am in Canada, so fairly similar health care systems. I was 48 when I had a brain bleed and it was determined that I had an AVM in the left temporal, on the inner side of the lobe. Mine was left than 1 cm. Through the process Gamma Knife presented the least risk due to location and trouble to access via craniotomy. I had one dose, the halo was utilized, and some 27 months later an angio determined it was obliterated. I had some swelling around the 6 month mark, but not to the extend of requiring steroids. I am currently on Keppra as I had one seizure in January of 2023. I due have a little scaring there but not sure if due to the GK or the bleed.
For me, I did not wish to experience a beed again. I dod have the two options but certainly GK was the least risky. The initial stages are certainly overwhelming, there is so much information available through Dr. Google. My team was incredible, and I had complete faith in there opinions and skills. I am a firm believer that often we donāt know the ārightā answer until well after the fact, for me it was 27 months with obliteration and no further bleed until this was achieved. I profess we have to be at peace with the direction we choose, getting there is difficult. Take Care, John
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I have to say that the Elekta Esprit is top of the line so I am very pleased with that for your husband. I totally understand your fear. I do have to tell you that my sonās Radiology team did mention to my wife and son during one of the pre Gamma knife procedure teleconference, that the gamma knife does prevent in a very high degree any hemorrhage event. That is something i did not know that was very good to hear. It is NOT 100% prevention but Radiology team said that it does offer a great deal of prevention. Overall, I do believe you must now trust the process and @DickD already assured you that the hospital is a very good one in the UK.
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Hi I have a similar size AVM in the same location and I had gamma knife at Sheffield in March. Iām not clear of the 6 month mark yet. I was told similar, with 10-20% risks of temporary swelling and slightly less risk like 5- 10% of permanent side effects. On the flip Iām told if I have a bleed so stroke thereās 10% risk I die and at least 50% risk of paralysis of some degree.
I prefer the 10% risk of side effect from GK over 10% risk of death doing nothing. So thatās how I decided.
I havenāt ever had a seizure but my AVM is in my speech processing area and I get rare moments of speech loss. I had prolonged speech loss for about a week which came on about 60 minutes after my gamma knife literally as I got back to the hotel. Iām a lot better now, I had one episode of speech loss again a few weeks ago but it only lasted a minute. I consult people about nutrition for a living and although Iām still exhausted I manage to get through packed days of consultations talking to people so pretty good recovery considering.
We rang the ward after my speech went and I went and stayed in the night but I couldnāt sleep the ward is really hot and that was in March , the staff had no understanding of what to do with me and left me with my curtain around me all night without even offering me water the whole night when they were supposed to be observing me for seizures, the night staff shout to each other I honestly would have had a better recovery in the hotel. My husband had to leave me and could only leave me with a note to show staff that I was in pain from the frame sites and headache and have lost my speech, the consultant never came to assess me anyway. I was not offered steroids and told next morning by a nurse from the gamma team even if I had seizures they donāt use steroids unless in exceptional situations due to their side effects.
The actual stereotactic team I canāt fault, they stay with you the whole day guiding you round the treatment stations and they seemed very professional. The framing was the worst part and laying down with the frame on. It is a long tiring day. From talking on this group I seem to not be the norm though as most seem fine. I can only describe a feeling of being microwaved in the head after it, a kind of dehydrated exhausted state of mind. I have fairly good odds of it being obliterated so i hope it was the right decision.
apparently there were videos of the process at Sheffield on their website which i had not watched so I was very unprepared. My radiation lasted 1 hour 45 mins I genuinely thought it was one zap and done! Iām very anxious to pass a 6-9 month period without any swelling or side effects, the slightest ache gets me panicky and I have my what on earth have I done to my brain moments of worry. But plenty on here seem to find the process much more tolerable.
I think thereās some side effects Iām not aware of and only through this group Iāve read about a few but Iām kinda glad I didnāt know about them before. Good luck deciding.
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Hi Aanie
What you are going through is very similar to my experience. Indeed your Husbands AVM is almost identical in size to mine. Although mine was on the right parietal lobe close to the motor strip but the same size 3cm, an ideal size for Gamma knife treatment I was told by the consultant at Sheffield.
It may help you to read my post Gamma Knife Surgery Sheffield which will give you an insight into what to expect and help you realise that you are not alone in your thoughts and fears.
Everybody is different but I did not have much in the way of side effects but the anxiety and fear of the unknown was much worse.
I was 70 when I had my treatment and it was said that it could take 4 years to show any results. My last scan at 5 years, post op. It has shown that there is no residual evidence of the AVM ie it is obliterated. 
I hope this helps you both to see that what you are going through is not the end of the story but maybe the pathway to a life without the worry of what may or may not happen to your husband. Either way it an entirely personal choice that only your Husband can make.
Stay Positive
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My daughter received GK at ucsf in August 2014 and angio confirmed complete obliterated 5 yrs later. 1.5cm right temporal. Bled 2011. Excellent team and we are so glad we took this ālighterā hand version over surgery. Good luck to your husband!!
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Hi,
Iām so sorry to hear what youāre going through and my story may not be what you want to hear, but no one told me beforehand!
First I want to make it clear that I DO NOT regret my decision to do GK treatment!
My AVM is similar size and location as your husbandās, though not exactly as mine is more central. By 2018 I had experienced 3 bleeds and I was only 22 at that point. My only option was GK and because the bleeds were such a horrible experience, left me with depression and anxiety and lead to self isolation āto prevent another bleedā, I instantly agreed to GK!
Due to the size my neuroradiologist decided to do it in 4 steps to not blast such a large and deep area all at once! The first 2 rounds went by without many issues, some fatigue and problems focusing at times but really no big deal. It started after my 3rd dose that I developed foot drop and a few months later my thumb on the affected side stopped working, my arm got weak and then my finders stopped working. I developed spasticity so my hand is always in a fist and for the last ~2yrs I havenāt been able to use my left hand. Itās upsetting but Iām starting to get used to the idea that thatās just how things are. I recently had another bleed and my last round of GK right after.
Due to the location right by the motor area the risk was always there, but in AVM groups I never read of such bad side effects. On the bright side it only got so bad because itās closing and hopefully it will be fully obliterated soon so I can start playing sports again which will definitely help my motor recovery!
Wishing both of you all the best and like I said, I donāt regret it, itās just a lot to mentally process at times, but I prefer it over walking around with a ticking time bomb in my brain!
Have a good day!
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Hello there!
So sorry for your situation.
I was diagnosed at age 50 after I had seizure/stroke symptoms and had scans in hospital. I am Grade 6 and inoperable, but to summarise, I was offered GK and consulted with neuro at UCLH London, where I have my yearly MRIs. I decided against it because the risk of something going wrong was about the same whatever I did, GK or not.
I have adjusted over time into a calm and simple life and most recently was told that my AVMs (yes, plural) are stable.
I write because while I donāt know the finer details of your case, nor the age at which your husband was diagnosed, I noticed that there was a lack of people here talking about the really tough decision that I made. The choice to Not go forward with this.
Iāve had a couple of small alarms when Iāve had to spend a night in hospital, with severe pain, but altogether really take charge of my daily routine so I can be as good to my body as possible.
Iām now 55ā¦and no hospital stays for 2 yearsā¦
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Hi Aanie,
Just to repeat an earlier comment, every AVM is as different as the patient. My AVM sounds a lot like your husbands, left front lobe and about 3 cm long. Mine was first discovered at age 63 following a seizure. I had two more seizures and a brain bleed (stroke) in the next two years. My neurosurgeon from the University of Michgan Hospital offered me the option of radiation or removal. But his recommendation was radiation because of my age and he risk/benefit ratio. I never wanted to go through a stoke again.
The radiation treatment happened four months after the brain bleed (when I was still going through speech therapy to learn to speak, write, think and add again). I used the helmet (which i still have) to pinpoint the location. Everything went fine. I walked out that day and still have an MRI done every 6 months to check on the results. Five years later, it is still shrinking but not yet obliterated. My only real restriction is keeping my heart rate and blood pressure below 140 to avoid another stroke. That means no heavy lifting, running or exertion. Itās a pain but itās much better than the alternative.
Best of luck to you and your husband.
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hi Aanie ! Im diagnosed with same symptoms on Avm . On 29th of January 2025 I had long sezure and then after on Neurological diagnosed with AVM MALFORMATION back left side. I did angiogram on 14th of May and still waiting for meeting with doctors to offer me the treatment. Im Under antisezure medication.I donāt have any symptoms till now or another sezure. I had same concerns but not anymore . Stress doesnāt help and affects all the family. My wife positivity helped on my psychology so much that I nearly forgot my illness.Keep positive Everything is going to be okay 
Tony
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London, UK 41 yo - left parietal lobe - 0.8cm from motor cortex. I had 3 modalities offered - GK, Embolization and Surgery. Embolization specialist turned me back on ths treatment because of the promixmity to the motor cortex and it is not as acute as surgery so he was worried about stroke or permanent deficit. So I was left with GK and surgery. I stress that every patient case is different based on severity, location, age and many other factors. But for me the influencing factors where I chose surgery were:
GK
Long wait time (3-5 years) to know if it worked. My anxiety couldnāt handle this
One GK specialist knocked me back because it had ruptured and reccomended surgery
Other GK specialist was too strong an advocate that āGK has little side effects so its better than surgery because recovery is toughtā
Surgery
98% obliteration rate. recovery can be 6 weeks to a year or longer but I had that time to spare
Immediate knowledge via angio if it worked or not
My surgeon spoke my language in terms of hard facts and risks and I like the frank approach
I donāt want to sway your decision because this is just my experience but I think a specialists need to weigh in on waht the patient is optimising for. Frankly I would have taken surgery for its absolute nature because inside i was already gone. Scared, nervous, afraid and a bad father/husband. Happy to chat more directly if this has helped. Stay strong and youre in the right place with many people cheering you on
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