First Appointment (finally)

Well after finding out 7 weeks ago that I had an AVM ( 3cm left temporal lobe, ER doc said occipital :person_shrugging:), I finally saw my neurosurgeon today! I was really hoping that I would qualify for surgery, but unfortunately he said based on the MRI, it’s a bit too risky, 25% chance of neurological deficits that would impact my speech and vision, because of how densely it’s embedded. So he’s leaning towards Gamma Knife. I’ll have an angiogram within the next 1-3mts and we will make a final decision based on that.

My AVM is unruptured but based on my symptoms, he’s certain that I’ve been having seizures! What?!? The last 3 years make so much sense now! I thought I was losing it​:flushed: He wants me to start Keppra, but I’m hesitant. The side affects are a bit wacky eh?:grimacing:

What a journey, but I’m so grateful it hasn’t ruptured :pray: I’m also grateful for this community :heavy_heart_exclamation:

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Hi Phoenix, me again :slight_smile: That is great news that you finally got to begin getting some answers.

Other than location of the AVM, yours and my journey sound almost identical. I too had been having focal seizures the past 15 years and had accepted them as panic attacks. Mine ruptured, which is how I was diagnosed (sort of) so I had to have a few embolizations. I was told that gamma knife was the way we will be proceeding because of the deep location, only for things to change drastically last week.

I will be very interested in hearing about what your neurosurgeon says about radiation in the time ahead as mine just said that oncologists are tending not to radiate vascular malformations these days. I think it is just due to limited resources; yeah, why not, just put me under the knife because the hospital is busy. I was put on Vimpat (lacosamide) which is prescribed for early onset focal seizures. I had quite the side effects and still do a bit. Perhaps ask about early onset seizures as yours, being almost undectible like mine, may be focal in nature too.

All the best.
Chris

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Hi Phoenix.
I’m really glad you finally got your appointment! Hope the angiogram will clarify the things and help to find the right treatment. In any case stay positive and optimistic ) There are 3 weeks past since my craniotomy, I have terrible headache, numbness on the side treated. Unfortunately my double vision was not resolved and my doctor further referred me to neuroophtalmologist. I can’t sleep at night due to headaches, painkillers don’t help too much. But trying to stay positive and look forward to speak to NO, although not that optimistic that my vision problem will be resolved.

Wishing all the best!!
Jenny

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I know you guys know this but we have a whole group of @Canadians who you can stand together with, when it comes to understanding what you’re being offered in Canada. There doesn’t seem to be a lack of radiotherapy treatment in the UK, though I feel as though I’ve read an article recently that questioned the efficacy of embolisation plus radiotherapy.

Keep talking about how you’re getting on because it will help others.

Best wishes all,

Richard

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Thanks Richard. I dont necessarily believe there is any shift among neurosurgeons and oncologists in Canada away from using radiation on vascular malformations; I am however growing ever more concerned that my treatment plan is based on what this hospital has resources available for. If best course of action is very invasive resection surgery, then I am on board; just not if it is because of me being triaged away from radiation. If others in Canada are not getting fed that info then I will be asking for an explanation when I manage to secure a phone call again.

Chris

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Indeed. I just thought there’s a way for you guys to hang together about stuff like this.

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A bad habit of mine at work is responding to emails before I read the whole thing. I missed this part at first but it is very interesting and if the case, makes me feel a bit better as to what is behind the planning. Thanks for this.

Hi Chris, my province does not have Gamma Knife, but we have a partnership with Sherbrooke in Quebec, which is where I’ll be receiving Gamma Knife if I’m a good candidate. My neurosurgeon said this particular clinic is renowned throughout North America for it’s success.Je also mentioned Toronto Western, they have an actual AVM clinic but it would take a lot longer for me to be treated there as we don’t have a partnership with them.

I hope you get some answers and the best possible treatment there is to offer.

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I need to see if I can justify the statement. I haven’t found what is triggering this thought in my head but I think it’s possible your doctor’s reticence could be to do with this. I’ll keep looking.

No urgency as I don’t expect that I will be talking to the neurosurgeon any time soon.

Hello Phoenix, can you advise what province you are in? I am in BC and have been told both by Neuro’s here and in Alberta that they don’t have a partnership making it difficult for me to receive GK treatment. I am awaiting news if I am even a candidate as I have had two conflicting opinions on my very complicated case. I have 3 AVM and when discovered it was deemed too dangerous to intervein but things have changed and I have more health issues recently so I await news next week of next steps. Thanks for posting about GK offerings in other provinces. Its helpful to know this as I navigate this tricky medical journey. All the best to you.

Hi Lisa, I’m in NB. I’m sorry to hear that you’re having such a difficult time with your AVM and medical care. Healthcare might be ‘free’ here in Canada but we don’t have nearly the services our friends in the US have eh? However, I’m grateful it is ‘free’. Our partnership with Sherbrooke (QC), is due to Sherbrooke university, alot of their medical students come here for their residency. I was told the wait time for NB patients to receive Gamma Knife in Sherbrooke is about 1 month. I’m sure your team could make the referral either to this hospital or Toronto Western (who have an actual AVM clinic), just the wait could be a bit longer. I’d actually like to get a second opinion about surgery, I was really hoping to just have it surgically removed.

I really hope everything works out for you :pray:

Thanks for your reply and so true we have free healthcare but it’s substandard. I was actually in Hawaii when I had to be hospitalized and spent 5 days in US hospital before returning home to spend 5 days in my home of a kelowna hospital and US fleet like Ritz and local felt like third world country in comparison.

It’s taken 5 weeks to see neurosurgeon and my case is expedited. I have no idea what he is going to recommend, but I am ready to find out.

I wish you the very best on your journey. For now I am feeling very grateful I have bounced back from my event and am walking and my vision is almost back to normal. It’s been a miraculous recovery in a short period of time.

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Hi Phoenix and Chris,

Firstly Phoenix I hope they deem you a suitable candidate for gamma. I remember being in exactly the same boat, surgical options very risky and I was hugely disappointed by this. But I was a suitable gamma candidate and 4.5 years down the road I will find out in November whether it has worked!!

My situation was also very similar to yours. I was diagnosed after my rupture in 2019, right occipital SM grade 4. Surgery was deemed 40% likely to cause motor or vision deficits due to location, depth and configuration of the AVM.

I am VERY INTERESTED in your experiences of focal seizures. I was never asked about this, but in the 3-4 years leading to my bleed I had what I felt were panic attacks at the time. I have never associated them with my AVM. They happened exclusively at times of high stress and usually when I was speaking/presenting in front of groups. It was like I had lost the ability to speak or move for just a few seconds in reality, but felt like a lifetime…time moved very slowly, I had visual auras and then felt absolutely exhausted afterward. Can you describe your focal seizures? Were they anything like this? I am on no medication and haven’t had one since my bleed, although my work related stress has also been far lower since then.

Chris and Dick, there is evidence from published studies suggesting that embolisation materials may affect the efficacy of gamma knife. My gamma knife surgeon was anxious to ensure that I was not embolisms during the acute phase post bleed, and my consultant neurosurgeon who oversees my care said that he often uses embolisation as a precursor to surgical resection but never prior to gamma knife for this reason. If you search for the studies or just Google ‘embolisation before game knife for AVMs’ I am sure you will find the relevant studies.

Best of luck.
Jonny

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Hi Pheonix,
I have the exact same AVM, both in size and location (~3cm in left temporal lobe, also just as deep as yours). I found out incidentally after getting a CT scan of my brain after an accident which gave me a few facial fractures (I’m all good now). My AVM was also too risky since it was densely embedded as well.

I had gamma knife radiation done in December 2022 (8 months ago) and felt just fine afterwards for a few months, up until May of this year (5 months post radiation). I ended up having a a seizure in May and June (both around 5:30am) due to a lack of sleep. After the second one, I was put on keppra (500mg twice a day) and did an MRI scan, which showed edema (some fluid & swelling) near the radiation site. Since then I have had zero seizures and have felt great. If you have any questions, please ask away :slight_smile:

Note: The day of the Gamma Knife radiation should be nice and smooth, however be prepared for an insane amount of pain once the pin used to screw the head frame on comes off after radiation. I was expecting pain but it was super painful for about 20 minutes after they took it off. It’s only for a super short period of time, but just be prepared to be very uncomfortable and prepare to be in pain at the pin site. When you get home, after a day or two, you might get some puffiness near your eyes and cheeks and forehead from the anesthesia used in those areas. However, it should subside within a week or two. Other than that, at least from my experience, everything went just as well and expected.

Another note: It’s very important that you prioritize eating right and prioritize getting adequate sleep EACH night to avoid seizures, brain swelling, and other complications. Aim to get at LEAST 7 hours of sleep each night, ideally don’t stay up past midnight and try to get quality sleep (meaning sleep at the same time every night, and wake up around the same time as well).

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Hi Phoenix,

I was in a similar position to you - AVM too deep for surgery with a high risk of neurological complications so I had GK. Immediately after my AVM diagnosis and before the GK I was prescribed Keppra for the seizures - petit mal and grand mal. I was anxious because over the years I had tried various anti-convulsant drugs without success (at the time they thought they were treating epilepsy rather than seizures caused by an AVM), and the side effects of some of the drugs were upsetting. My neurosurgeon persuaded me to try Keppra on the basis that the other drugs had not been the appropriate ones. I did have side effects from the drug - severe depression, extreme mood swings and weird thoughts but they only lasted around 7-10 days after which time I was back to normal. I have been taking Keppra now for almost 9 years - 3 x 250mg tablets a day and have gone from 4 seizures a month to 1 (not AVM related) in 9 years. I won’t lie, that 7-10 day transition period was horrible for me, but the tablets and GK surgery has transformed my life since then. It is important to remember that this is just my experience - every individual is different. I hope your journey is as successful and transforming.

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I’m thinking it may have been a post by you that brought this knowledge to my mind. It’s good when my brain remembers snippets like this. Thank you.

Richard

Hi Jonny, I hope your results show that you are AVM free!!

For the past 3-4yrs:
Spatial awareness: I found myself becoming off balance, disorientated, especially with my awareness of where my feet were in comparison to the floor. For example, walking up and down stairs, if I didn’t hold on to the railing and really focus on my feet and steps, I would become disoriented and trip. This out of nowhere just started to happen. Later I became ‘clumsy’ and off balance, not like me.

Speech: I started struggling for my words, taking pauses mid conversation because the words wouldn’t come out, stuttering.

Vision: double vision at times. Visual aura in my right peripheral vision, it was wild as if I took a psychedelic!

Memory: memory not as sharp as it used to be.

Physical Sensations: tingling in my face.

Loss of consciousness

Neurosurgeon thinks that these episodes were all symptoms of mini seizures, and the time I lost consciousness a full seizure!

I’m a teacher so these symptoms were very concerning for me, I went to my doc several times thinking I had MS and all she did was assure me that she didn’t think I had MS and chalk it down to “mystery” symptoms, never sending me for an MRI! Finally I insisted until she ordered one, which she did and my AVM was discovered.

Hope that helps!

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Thanks for the info Girminator, it’s appreciated! At this point it seems that GK is the direction we’re headed, final decision will be based on my MRI results.

Hi Dill, yes similar indeed! I’m so happy GK was successful for you, this is encouraging. I have yet to start the Keppra I was prescribed as I’m nervous about the side affects, good to know that your side affects subsided after some time.