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 avm’s, 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 husband’s . 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 doctor’s 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. Don’t 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 didn’t use the screw mask but a face mask that was molded to him. My son didn’t 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 son’s 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 life’s 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 – 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 I’ve 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? I’m still here and the way my AVM was behaving 8 or 9 years ago, I’m 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 don’t know the “right” 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 son’s 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. I’m 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 I’m told if I have a bleed so stroke there’s 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 that’s how I decided.
I haven’t 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. I’m 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 I’m 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 couldn’t 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 don’t use steroids unless in exceptional situations due to their side effects.
The actual stereotactic team I can’t 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! I’m 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 there’s some side effects I’m not aware of and only through this group I’ve read about a few but I’m kinda glad I didn’t know about them before. Good luck deciding.