I had posted about 6-8 months ago about my boyfriend’s journey with a brain AVM and seizures. After a consult with Dr. Speer at St. Michaels hospital, we were told that our only option is a radiation surgery. We got referred to Dr. Habert at Toronto Western and we have an appointment with him on Feb 15th.
I’m listing some of the questions we’re thinking on asking below. Please let me know if I should add anything else? What has your experience with radiation been like?
- What is embolization and is that an option? Is that better/different than radiation?
- Post angiogram - what does the position of the AVM tell us?
- Does the position of the AVM now give us other options apart from radiation?
- What exactly is the process? What is going to happen with the radiation?
- If you “remove” the tangled arteries/veins, wouldn’t that cause even more of an issue with blood flow?
- What is the recovery process like?
- What will boyfriend’s long-term life look like post the radiation?
- How long will the radiation keep the AVMs out? Is there a chance the AVM could form again?
- What will boyfriend’s day-to-day life look like post the surgery?
- Is it possible for the AVM to reoccur in a different part of his body? If it does, what does that look like in terms of bleeds, seizures etc?
- Will boyfriend still need anti seizure meds after the radiation?
- What are the risks of getting radiation/embolization?
- Is there any reason why we should not do this radiation surgery?
- What happens if there’s a bleed?
- Could you explain the results of the angiogram in case we missed anything?
- What are the signs and symptoms post op to watch out for?
- Is there a chance that the radiation would not work even if we go ahead with it?
- What exactly is the type of radiation we’re going for?
- What is gamma knife radiation? How is that different from surgery?
- How big is the AVM in terms of mm or cm?
You could ask what grade of AVM your boyfriend has. This is a score which indicates size, how deeply connected it is and how close to critical functions it is and it is likely the depth or “eloquence” score which is leading the doctor towards radiotherapy. Carrying out open surgery in deep areas or areas of critical functions can do more damage than good.
You could also ask what the time frame will be: what does the doctor expect at 6 months, a year, two years? There are risks of side effects but I think you’ve got this in your questions already. Typically nothing appears to happen immediately but radiotherapy patients seem to start to have changes in the therapy area from about 5 or 6 months as far as I can tell from reading stories here.
A question that may be difficult to ask is whether it is better to go forwards with treatment or to keep the AVM under surveillance: sometimes the complexity (depth or eloquence) risks are such that it is advised not to operate, so being candid about that can remove a difficult barrier.
In regard to your question 5, the tangle of vessels is basically a mass where there should be a capillary: perhaps the formation of the capillary went awry in the womb so the vessels are normal sized ones rather than being a capillary. The problem with this nest of vessels is that it is admitting high pressure blood straight into the venous network and the veins are not high pressure vessels. A normal capillary only oozes blood at a low rate into the vein. If an AVM is untreated, the risk is that the vein gives way under that high pressure and results in the head in a haemorrhagic stroke. Removing the AVM, removing the malformed vessels, closes off that route directly into the veins and removes or reduces the risk back to normal levels. There’s no loss of absorption of oxygen or nutrients because there’s already no capillary. Sometimes more is blocked off than is ideal or intended and can lead to deficits or side effects from the intervention.
Catheter embolization achieves this closing off of the AVM by injecting glue or other blocking material into it. The artery supplying blood to the AVM needs to be of a large enough cross section to admit the catheter for an embolization, so this cannot be used for the finer blood vessels.
Resection removes the AVM by clipping off the vessels.
I believe radiotherapy achieves it by causing sclerosis (scarring) of the vessels and closure that way.
I think you’ve got a great set of questions and I hope my thoughts might help.
Feel free to ask us anything, as well.
Very best wishes,
Looks to me like you have most of it covered. I’d suggest taking a spare copy of the questions and asking for a formal written reply. They might not provide this but if you don’t ask…
In UK some of these review appointments are very short and you dont always get time to ask even 10 questions, so you may want to prioritise your list. My main question was what if i don’t have surgery? This was basically the only option i was offered.
If you don’t have treatment and then you have a bleed you could die or have a life changing side effect. I bled and then had a year of hospital treatment, something I would never want to repeat.
Be ready for a bumpy ride, everyone has a unique experience. I have visual problems but others have hearing or mobility issues.
Is your boyfriend healthy enough for treatment? I had to wait some months before I was able to handle surgery. Imo the stronger you are the better you will recover from treatment.
Just to chime in that last comment was spot on and great questions prior. One thing my wife and I have done, for the past 20 years, is keep a keep note (keep.google.com) that is shared between our two accounts and phones. Then while we’re in with the doctors we can ask questions and have notes right there. Plus it’s digital so no more fumbling about the house trying to find the notes. Also if you have a Google account it’s right there in your email as well.
Hi Kanika, I like the way your mind works. I think you should ask something about what to expect emotionally/mentally on this journey. It was a challenge for me and even if you don’t get one single answer you can use, you will have gotten an important issue out into the open with your boyfriend.
Also lots of people here are willing to talk about their AVM challenges vis a vis their relationships.
Ask one of the moderators if there’s a way to get started.
Best wishes, Greg