Dear all,
I posted on this group in 2015 to look for advice following my daughter’s ruptured AVM at age 3.
Since then, she had LINAC radiosurgery which successfully obliterated the AVM in a year.
Unfortunately we recently found out that the AVM recanalized right next to the original location.
The radiation oncologist has advised that we should wait 3 to 5 years before undertaking radiosurgery again due to the high risk of recanalization happening again. My daughter is now 7 but her brain is still developing.
I am not comfortable with this decision and I want to get second opinions based on similar experience. I always thought the risk of rupture in a child who already had a bleed was significant and had to be managed. I am now considering GammaKnife in Europe, since it is not available for young kids in Australia, and have been in touch with several hospitals.
Has anyone had experience with AVM recanalization after radiosurgery and what did you do?
Has anyone had both LINAC and GammaKnife and what are the differences? I understand both need a stereotactic frame but the type of rays is different.
Has anyone taken the option to wait 3 to 5 years and what happened? My daughter’s AVM is very small and located in the left ventricle. I still can’t get answers from the Drs as to whether another bleed would threaten her life or not. The first one did not, she had no deficit.
Thanks a lot for sharing your thoughts.
Virginie,
Hi. Its good to hear from you. I’m sorry your daughter is going through this all over again.
There are a large number of people here who’ve had radiotherapy of one sort or another, though almost all have had gamma knife. My understanding of gamma knife is that it is less favoured for very young people, simply due to the delivery of radiation and the collateral damage it can do. However, if it is the best or only option, it may yet be the right thing to do.
The other radiotherapy treatment that I know of, which I believe is recommended for young patients, is proton beam therapy. There is an article on it in our AVM 101 section, or comparison of it with gamma knife, “photons v protons”.
There are definitely others who have had to undergo a second treatment of any of the interventions that are used for AVMs and my reading of it is that repeat therapy of one kind or another is often undertaken. Insofar as your daughter is still very young, I rather expect proton beam therapy might be applicable.
I know of one other person in Oz with a young child with an AVM, though I think now older than your daughter, but has been fighting with his AVM for several years, and that is @Christine_O.
I hope some of us can help you to the answers you’re looking for.
Very best wishes
Richard
Hi, and welcome back! I’m really sorry to her about your daughter’s AVM being back. I had gamma knife in November 2016 for a left temporal. I haven’t heard of recanalization, so can’t add much. I’m a big believer in researching and second and third opinions! One thing that is common is opinions are often varied but there is a lot of experience out there and expertise. I don’t think you will find anyone who will provide an opinion on results of a bleed. Wishing you and you daughter the best, and if anything comes to mind that may be of benefit to you I will be sure to reach out. Take Care, John
I was assuming “recanalisation” was a posh term for the AVM finding another route of blood supply, “recruiting arteries” as I’ve seen described. If it means something else, do clarify but there are plenty of people whose AVM has re-grown in some way, if it wasn’t 101% closed off previously.
Thank you for your input and support. As it stands, I have just received clarification from the neuroradiologist today that it is not a recanalization but a regrowth of the AVM. Not sure why it took them 4 months to clarify and it certainly does not change the consequences. I have sent my daughter’s medical records to no less than 10 doctors in Europe, USA and Canada and I am waiting for advice. It seems that there will be a consensus on the “do nothing and wait” scenario. Proton beam therapy is unlikely to be an option due to the small size of the AVM.
I have been doing a lot of reading online (research papers and medical presentations) and I realise only now that my daughter is definitely not as lucky as I thought she was among the AVM survivors. When she had her haemorrhage she spent “only” 3 to 4 days in ICU and about a week in the neurosurgical ward. Although the bleed was inside the ventricles, there was no need for external drainage and she resumed school and other activities not long after. We were lucky to be given a treatment option with LINAC SRS which accomplished a miracle within a year.
Unfortunately, I now understand that my daughter’s AVM is one of the rarest, being located in the choroidal plexus, and one of the more prone to bleed due to its deep location and exclusive deep venous drainage, in addition to her young age. So I am really freaking out that the only advice we are given is to wait. Wait for what? Wait until she has another rupture and needs emergency surgery? Wait until new forms of treatment are available? Wait to see if she is still alive in 3 years’ time? The risk of regrowth will still be high since she will be only 10 by then so I don’t really understand what difference it makes.
I have been in touch with some survivors and parents of survivors who had several bleeds often requiring several emergency treatments. How are families supposed to cope with this? The journey started nearly 4 years ago (16th April 2015 is when it all started for us) and I can’t imagine this going on for another 10 years. My daughter is not so young now and the medical procedures are more painful for her, she is starting to ask questions and I can feel that she is starting to worry. How do you explain the situation to your child?
Virginie,
I’m so sorry that you and your daughter are going through this. In your first post, you suggested that the interventional radiologist wanted to wait before doing a second radiotherapy because of it being re-canalisation. If it is now not a re-canalisation, maybe it is worth discussing him or her whether it means another zap is possible, or the right thing to do.
It is possible that they want to delay in order not to put your daughter under too much radiation too quickly, especially at a young age. As patients, we tend not to think too much about the long term effects of our treatment, preferring the immediate fix but the doctors understand the risks associated with the treatment, just as much as the malformation and want to make the right, balanced decision. So it may be that it is important to wait a while.
I will write more later.
Thinking about you both,
Richard
The other thing that occurs to me is that you’re going through a really difficult time as a parent and you should make sure you find appropriate support for yourself in your town if you can. Remember flying on an aeroplane, we are told if the air fails, the masks drop down but to fit your own mask before attending to others. Do make sure you think about your own needs and get whatever support you need as a front-of-mind thing, not second.
We can be here, and there are other @ParentsAndCarers on this forum, but it’s really good if you can access real people where you live.
That’s all my thought for today.
Lots of love,
Richard
Virginia, I empathize with you. I wd rather live with my VM than deal with a child who has it.
Mine is not brain related. May I suggest you visit birthmark.org for several reasons.You can watch videos done with experts in the various disciplines. One recent video is an interview done with a child-life specialist, who wd help you find age-appropriate ways to educate your child. You can contact and seek consultation from an expert physicians, after they review the scans… Dr. Linda is your point person if you need guidance. All the best.