Hi all,
I’m 46 and five years ago I was diagnosed with a right occipital AVM after a bleed from which I made an excellent recovery, with some lower left visual field loss. I probably had a small bleed when I was 20 but didn’t go to hospital. My AVM is SM3/4 with a large varix.
My neurosurgeon’s opinion in 2019 was that it is a difficult surgical target, but a good candidate for gamma knife. I was treated at Sheffield with 25gy marginal dose. After initial signs of reaction around the AVM my 5 year scan shows no change. I had a superselective angiogram a couple of weeks ago and my neurosurgeon has now offered the surgical option, with some embolisation directly prior to surgery. He assesses the risk of neurological worsening at 25%, which may be mild and temporary or severe and permanently disabling. Meanwhile my annual risk of further bleeds is assessed as around 4-5%, and being young(ish!) he said doing nothing is a high risk strategy and that the AVM should be treated if possible. I’ve been offered another gamma knife treatment but it’s acknowledged that I was minimally responsive to the first so it’s unlikely to work. 15% of people don’t respond so just unlucky. Possibly due to the very high flow rate of my AVM.
So, having spent five years in a hopeful bubble, I am back to where I started. I believe my neurosurgeon is a little more confident in the surgery now that I’ve had a bleed AND the radiation in that vicinity, but he is clear that there are real risks in particular to my left visual field but also potentially to my central vision, which I need to accept if I choose to go ahead. He also underscores that a bleed could have similar or worse consequences, and that surgical issues could be temporary.
No one can tell me what to do, but I’m very interested to hear others’ experiences, thoughts, ideas, especially those who have had surgery with high risks, and how you prepared yourself. I am extremely well and active and it’s hard to believe that I need such a radical course of action. But having had at least one bleed I know how serious that can be even with a good outcome.
Jonny, I think it often comes down to trust of your care provider, and being at peace with whatever decision you come to. We make these brain decisions not knowing if it is the right decision or not until after the fact. Take some time, weigh the risk vs benefit and come to peace with your course of action. Take Care, John.
Jonny,
I write this with no ability to offer any advice or insight. I am replying only to offer you my best wishes on all of this. It is a remarkably difficult decision to make and I understand it completely. When I was first diagnosed and I still didn’t have the decision on which route I could go (still didn’t have my MRI), I remember constantly saying and thinking that I don’t think I had any ability to consent to having surgery or embolization. I racked it over constantly in my head. As we know from my story, in the end, I was in no way eligible for surgery or embolization.
I do hope you keep us updated, Jonny. As I said, I hope you the best as you work through making your decision.
Best regards buddy.
Kev
Dear Indalo,
Im so sorry to hear that. It is a scary decision. l learnt meditation to help me stay calm. My doctor put me on free course and it really helped. I hope you’re ok. Gill.
We spoke on this forum before.we both went to Sheffield about the same time, within a couple of weeks I think. I am sorry to hear that your GK treatment was not as succesful as was hoped and that you are now looking at starting again from square one.
Lets hope that the next treatment whatever you decide will be the right one and will give amazing results.
I too am going to have my last post GK MRI on the 23rd March at JR Oxford. I am hoping for the best. but nothing is certain either way.
Good Luck
Thanks all for your comments and encouragement. I am generally pretty chilled about having the AVM but I do find these decision points stressful. There can’t be many conditions where the treatment options are so grey…It’s great to have options but sometimes I just wish the medics would tell me what to do
Micko, I really hope you have a good result with your upcoming scan, please do let us know how you get on. Similarly I’ll update here when I know what’s happening.
Cheers
Jonny
Hello Jonny, I am sorry to read your initial treatment has not resulted in the outcome you were hoping for. It’s got to be an impossibly difficult to wait all these years just to learn you are back at the decision making phase again. I can totally appreciate your challenge and it sounds like you have a really strong will and a positive mindset, which will serve you well during this challenging decision making time.
When I first learned there is no treatment options for my AVM I struggled but as time has rolled on and I have had a very good recovery on my own I feel at times I am lucky not to have to make a hard decision. Of course it’s challenging to live with the knowledge nothing can be done for me, but all of us in this AVM community have challenges.
It’s never an easy choice but if you’ve tried the first option with no success & they now suggest removal then I guess the decision falls in your hands… there is always the option to get second opinions but I can assure you that the medical technology has advanced so much in 5 years & continues to advance everyday.
If you feel this is the right choice vs the risks then I say jump in & do it… keep us posted & all the best with whatever decision you make… God bless!
Jonny,
I hope you have been well.
It has been a while since this conversation was had. I think about you in the position that you are in, and I decided to check in on you.
Best regards,
Kev
Hello Johnny
I recently read about a situation similar to yours…
They had gamma knife it failed and then tried cyberknife…Have you considered about that option?
I hope you are all doing well and many thanks for your comments. Betty, my understanding is that Cyberknife would offer a similar outcome to Gammaknife as it’s delivering radiation but in a slightly different way. I’ve recently learned that my AVM didn’t respond due to it having ‘high flow fistulous components’ which sometimes don’t respond well to gamma knife.
Micko, what news on your scan?
I’ve had several discussions with my surgeon and we are now contemplating an attempt at curative embolisation, with surgery as a back stop. Initially they didn’t think it could be safely embolised and indeed are still saying that there are significant risks, but that it MAY be possible. I have a clinic appointment on June 25th to discuss it further and am also speaking to a surgeon in Germany who specialises in this procedure. I’ll update soon!
Jonny,
I certainly have no idea how I would react to this. I wish you the best my friend in this next step for you. Do keep us in the loop and I will keep you in my thoughts. I hope you have some answers soon for a clearer path.
Kev
Getting information from the Neuros at Oxford is as successful as trying to get blood out of a stone despite lots of emails and phone calls from my GP and myself, it shouldn’t be this hard but apparently it is. Very frustrating!!
Hope every thing goes well with you in your quest to get suitable treatment.
I read that they have different radiation and in the case I told you gamma knife didn’t work but cyber knife did,that’s why I mentioned it.Good luck with your decision and keep us posted!
I had a call with Rene Chapot in Essen, Germany. He feels highly confident that my AVM can be cured by embolisaiton in one or possibly two stages. He specialises in the transvenous approach which seems quite pioneering and only in common usage in a few places. I have done some research on Professor Chapot and he seems like a genuine one off, with incredible knowledge and experience, and appears very highly respected in the neurosurgical community. He said that he has treated over 700 AVMs, with relatively low complication rates, which must make him one of the most experienced operators out there. There is a lot online about him including his lectures and live operations. He came across very well when we spoke and gave me a lot of useful information.
I also met with my treating neurosurgeons at Kings yesterday who have been very supportive and generous with their time to date. They have also offered attempted curative embolisation but they have a lot less experience in this procedure, and seem less confident than Professor Chapot, citing quite high risks of neurological worsening and a significant chance of needing surgery still. They were quite open that they are more focussed on microsurgery and aren’t using the transvenous approach, and only rarely aim to cure AVMs with embolisation alone having done only a handful in the last year. On this basis my strong inclination is to go to Germany in September.
I would recommend anyone considering curative endovascular treatment to consult Rene Chapot for an opinion. I believe that curative embolisation is a rapidly developing area, and while large studies show a modest success rate (60%), there are specialised centers achieving better outcomes, although these need to be confirmed in new studies.
I think you should be careful with the promise of being completely cured after an embolization. It may improve your condition but AVMs are tricky and may resurge after some time. My son had his removed using glue embolization from the right side of his face when he was 13 and has had to return for maintenance annually and he is now 23. I applaud your doctor’s confidence but the word cured seems optimistic given the nature of this disease. Look forward to hearing of your results! Best of luck in surgery.
