Hi everyone this is my first time posting but I’ve been a lurker for a few years now.
My name is Tristan I’m from Toronto Canada and being treated at Toronto western hospital. In 2020 when I was 22 i was diagnosed with a grade 4 diffused AVM within the left parietal lobe and measures 52 mm x 36 mm. I was seen by Dr Kriggs and the team of interdisciplinary specialists looked at my case and they believe that there are no treatment options. I was told open surgery or endovascular curative approaches would harm the normal intermingled brain and radio surgery would need to irradiate a field of view that is too large to be treated effectively.
So far all that has been done other then ct’s and mri’s is a cerebral angiogram to get a closer look. Basically little is known about my type of avm and they think it is too risky to operate on so I’m basically in a situation where I have to deal with the pain and wait until it hursts. It’s hard to live like this.
I’m not sure if it has to do with the weather or pressure changes but the past few weeks I have had an intense headache non stop, everyday I wake up hoping it’s gone, I’m not sure how much longer I can manage the pain. I’m not sure if I should go to the hospital as I don’t currently have a family doctor I can reliably see to get this figured out or prescribed medication for the headaches.
I usually get a scan when I’m worried but nothing has changed and my last mri didn’t show any changes. Stresses me out a lot not knowing if it’s just a normal headache or there is currently a bleed happening that I don’t know about because this does happen somewhat normally but not usually for weeks straight. Just not sure what I should do and am seeking advice from anyone here who also has inoperable AVMs and how they deal with headaches that last for this long.
Welcome, and I really hope we can pass along our experiences that may benefit you. I will start by saying that the headache is concerning and I would certainly seek some sort of medical assistance. It is really difficult to not have a regular care provider, but your description is worth a trip to ER. If you describe your AVM, and they should be able to access your records, and then describe you headache, which sounds like it is either worsening or the worst you have had, they should at least go to a CT. The next option depending on any neuro may be requesting a referral to a pain clinic, there may be some treatment options there. I would imagine similar exist in Ontario, might be named differently.
Sorry for being so brief, but from me, I would suggest a hospital visit. Take Care, and hoping for some relief for you soon. John
I agree about a hospital visit. My AVM (right frontal lobe) has bled twice and it never showed any symptoms until the bleed when I had my first headache. Personally my bleeds also caused intense neck pain, nausea, weakness, numbness, and loss of consciousness, but symptoms will vary for everyone.
Regardless of having a family doctor, an ER doctor will be able to identify if it is a bleed and put you on the path to treatment. All I can say is that 6 years ago, I posted here about secondary symptoms like fatigue and mental struggles, and I ended up in the hospital a month later. If your body feels unusually worse, it may be trying to tell you something.
I was also treated at Toronto Western, so please feel free to reach out any time!
I had an AVM in the same area removed, thanks to the great team at Columbia Presbyterian Hospital in NYC and Dr. Bettett Stein, who is well known for his innovative approach and results. I’m not sure who’s there now, but you might want to check.
Makes a lot of sense to see an Dr right away, Er if possible. Did you get 2nd opinions for treatment? Dr Lawton at Barrow removed my son’s Grade 3. We got a 2nd opinion online. It was ~$300 to do so. He has done the most avm surgeries in the US.
Thank you for your response. Fortunately, the past few days have been more manageable, and my headache has largely returned to its usual baseline. I will follow your advice and book an appointment with my care team or go to the hospital if I’m unable to secure an appointment soon.
I was also advised to connect with a pain clinic, and I’ve received a referral from the physician overseeing my case. I have an upcoming appointment with them, and I’m hopeful it will support me in managing the pain more effectively.
Were you also seen by Dr. Krings? He is no longer at Toronto Western, so my care has since been transitioned to Dr. Radovanovic. You’re absolutely right that it’s better to err on the side of caution there have been several occasions in the past when I was concerned enough to undergo CT scans, although I haven’t visited the emergency department since my AVM was first discovered.
I would be interested in hearing more about your experience at Toronto Western.
I’m not certain that travelling to the United States is feasible for me, but I have been considering seeking additional opinions, especially since my case has been classified as inoperable. It is challenging to balance the ongoing fear and anxiety of living with an AVM against the potential risks and consequences associated with surgical intervention. In many ways, neither option feels ideal, so I have been relying on the guidance of the specialists who have assessed my case.
You can get what’s called a “remote” second opinion from the major neurosurgery practices in the US by applying through their online portal. It costs a few hundred dollars rather than anything prohibitively expensive, or anything needing you to travel hundreds or thousands of miles, so getting a second opinion is wholly feasible.
However, my understanding of diffuse AVMs is exactly as you’ve described: that there is “good brain” in between the multiple lesions and trying to resolve the lesions will most likely impact on that functional brain. With most AVMs, the lesion is discrete and has no function, so closing it off has potentially little-to-no adverse effect on your brain function. Where you’ve got the AVM spread over an area, I’ve not heard of anyone proposing to resolve it because of the likelihood of leaving you regretting the operation. The famous surgeons’ guideline being, “First, do no harm.”
But do ask. I think we all understand the need to ask what’s feasible.
There are a few people here with a diffuse AVM. I haven’t created a group for you to hang together but maybe I should. And there are others with AVMs in other dangerous places where the advice is clearly “We’re not touching that unless we have to”. It’s a hard position to be in but it is always worth remembering that doing nothing is sometimes the best option: all of us should remember that doing nothing is sometimes the best option.
I was seen by Dr. Schwartz, he was the Gamma Knife specialist. He has recently retired, and I can’t remember the name of my new doctor.
As far as Toronto Western goes, they put me on a treatment path quickly. I had the second bleed in the height of Covid lockdown, and my doctors attempted an embolization six months later (February 2021) followed by another Gamma Knife six months after that. My team is following me closely, and while I am still awaiting confirmation of obliteration, they are confident in the treatment they gave me. Let me know if you have any other questions.