Recently discovered 3.3cm AVM on left cerebellum

[laurence]

Hi everyone,

First of all I just wanted to say how great it is to have found this site. Before my AVM was discovered in November 2020 I had no idea what an AVM was. It’s great fo find a site that explains everything to do with AVM’s and to have a support network where others can share their experiences.

I’d like to share my experience so far and also get the views of those who have been through a similar situation. I’m now at the stage where I have treatment options but not sure what to do.

About me
I’m 37, a graphic designer from London. I have a history of long term depression and anxiety. Up until my AVM was discovered I’ve lived a normal life. I’ve traveled, scuba dived on several occasions and enjoy running and lifting weights. I’m not sure if my AVM has ever bled but in my teenage years I suffered from frequent headaches and migraines.

How my AVM was discovered
In October of 2020 I was under a lot of stress with work and personal issues. I was doing a stint of sleepless work nights and my blood pressure was sky high. For some reason I thought it was a good idea to counteract this by going to the gym and upping my weights to my body weight. It was around this period that I started to develop severe tinnitus in my right ear. I’ve always had mild tinnitus but this was something different. I could hear ringing above music and other loud noises. I left it for a week to see if it improved but it didn’t and so I went to an ENT specialist. He found no obvious signs of hearing loss so organised an MRI to look for anything sinister, such as tumours. It was then that my 3.3cm left cerebellum AVM was discovered.

At the time of discovery I thought nothing of it, I did not know what an AVM was, nor did I understand the risks. I certainly had not experienced any obvious symptoms from the AVM and was told my AVM was not a cause of my tinnitus.

Neurosurgeon consultation and angiogram
It was only when I spoke to a neurosurgeon that the reality of it sunk in and I was made aware of the risks. In January of 2021 I had an angiogram to determine the state of the AVM and to see what procedures I’d be a candidate for. I’m not sure how many of you have had an angiogram but I was told it would be painless. I actually found it quite painful and felt the needled being pushed into my femoral artery, even feeling the tube being threaded past my stomach, which the radiologist said was very unusual. It was not a pleasant experience.

Angiogram results
I’ve been told my AVM shows no signs of recent bleeding but that it has likely caused the tinnitus, although there is no evidence of this from the angiogram. I have three treatment options available to me, including surgery, gamma knife and embolisation. Each have different success rates and risks associated with them. I now need to decide which option to go for, weighing up the risks, recovery time and success rate. Here is what my neurosurgeon has told me:

Surgery
Success rate: 98%
Recovery time: 2 - 3 months
Risks: Risk to life (circa 1%) and a 5% overall risk including infection, post-operative clot, stroke and co-ordination problems.

Embolisation
Success rate: A divided opinion with a 50% and 90% chance of total obliteration with one treatment.
Recovery time: 1 month
Risks: Small risk to life (circa 1%) and a risk of stroke, co-ordination problems, haemorrhage, incomplete treatment and groin haematoma.

Gamma knife
Success rate: up to 4 years to have its full effect. At 4 years 76% chance of obliteration.
Recovery time: 1 day
Short-term risks: Headache, lethargy and hair loss.
Medium-term risks: Radiation necrosis and cerebral oedema
Long-term risks: Stroke and tumour formation.

No treatment
I’ve been told that I have a 2-3% chance of a bleed anually and that because of the location of my AVM a medium or large volume bleed s likely to have a poor/incomplete recovery. This means I will likely be fully paralysed, in a vegetative state or dead. My neurosurgeon goes on to say “on the other hand there is a chance he could live a normal life without treatment and never experience a bleed”. I’ve also been told that removal of the AVM may not resolve my tinnitus which is now in both ears and extremely loud, to the point I am losing sleep and having trouble concentrating. It really is starting to take over my life and affect my day to day activities.

Decision
As you can see none of the options above are great. I’ve been left to make a decision, a very difficult decision. I think for me Gamma Knife is not an option as I don’t like the idea of getting a brain tumour but on the other hand a 1% risk of death for embolisation and surgery still seems quite high. If I do nothing I’ve been told I have a 2-3% chance of a bleed each year which is highly likely to result in death.

At this stage I really do not know what to do. Any views or opinions on the information above would be much appreciated.

Thank you,

Laurence

[DickD]

Laurence,

Welcome! It’s great that you found us and it sounds like you understand things very well, which is good.

I’m sure none of us want to tell you what to do (because none of us know what is the right answer). Making up your mind is hard but very personal as well. These are the same impossible choices that many of us have been given!

I can give you my view on things to help you make up your mind, perhaps…

1% risk is pretty low. I think I was given a 5% chance of “nasty stuff happening, including death” so I think 1% could be worse. I know a lady in Leicestershire who has been given a 5%-10% chance of nasty stuff happening. I don’t think she’s gone for an op yet, though.

If the neuro is confident in surgery rather than embolization or gamma knife, that’s interesting, especially for a cerebellum AVM. We have a decent proportion of people here with cerebellum AVMs where it is in so crucial a place, and/or so difficult to get at that surgery is out of the question and gamma knife is not always an option, so to have views on all three approaches is excellent. What I mean is that surgery in the cerebellum seems quite rare and there is at least as high a chance of surgeons saying “no, we’re not touching that”.

I would agree with the neuro re the tinnitus, only insofar as my interventional radiologist (I had an embolization) said to me that he wouldn’t warrant that my op would fix either headaches or tinnitus but that the objective is to reduce the stroke risk. So, focus on that maybe in deciding what to do. I think the reason that docs won’t warrant fixing things like headaches and tinnitus is that both are difficult to know whether the problem is emanating from the AVM. The brain is a very sensitive thing and can get upset at stuff that is way smaller than you can see, even on an angiogram.

The only person who can decide what feels right, which approach you and/or the doc are confident about, is you. There is no perfect answer to these things, unfortunately.

Hope you’re doing ok with the diagnosis. It’s pretty mind-blowing stuff when it happens and something to make sure we look after you emotionally as well as anything else.

Good to meet you!

Richard

[laurence]

Hi Richard,

Thank you for your prompt and thoughtful response.

You’re completely right that the decision needs to be made by me. Maybe I came across in the wrong way.

What I’m feeling right now is fear and concern for what could happen. If something goes wrong what could it mean for my loved ones and what could it mean for me.

I have the numbers but what I don’t have are insights. I’m hoping by hearing the views and experiences of others that I can make a more informed decision. But at the end of the day part of that decision does need to come down to feeling, as you said.

Right now my gut feeling is I can’t leave it and that surgery or embolisation is the best option for me.

Thanks again and nice to meet you too!

Laurence

[DickD]

I hope we can help you get there. It’s very difficult to get the right sentiment across with just the written word.

Have a read around here, especially in the cerebellum area of the site. I hope you’ll get a balanced feel for how your options fit in with the experience of others. I have to say that my reading of your options is very positive.

Very best wishes,

Richard

[Jim1947]

Hello. In April 2017, quite by accident, we discovered a growth about 2.5 CM, at the center line of my cerebellum. They did not know what it was from CAT scans and MRIs. They didnt give me an option, very certain it had to be removed surgically, as potentially it could be cancer.

I was assured as brain surgery went, my case was simple. It was a well defined mass, an easily accessible location, and expected outcome was excellent with no probable lasting impact. I would likely walk out of the hospital in 3 or 4 days and be able to do everything I have previously been able to do. I specifically asked about riding motorcycles. I was advised that would not be a problem and only potential was minor short term balance and speech issues, but they would not last.

My wife and I both agreed surgery was the answer and I was scheduled for June. As snowbirds, we flew back down for sugar from Washington, expecting to be here for a couple weeks at most.

Surgeon elected to do an embolization day prior to surgery, to make the operation smoother and reduce bleeding. They were unable to reach the area with a catheter due to the small size of the arteries. Surgery lasted about 8 hours. Pathology determined that I had an AVM, no cancer and no follow up treatment would be required.

Turns out I didn’t walk out in 4 days. After a week, I was transferred to a rehab hospital for physical therapy - to learn how to walk, improve coordination, etc. I developed nausea and had difficulty keeping anything down. Food repulsed me. I lost 40 pounds, For next two months I was in and out of the hospital. Developed a DVT in my right leg, probably from reduced mobility. That led to two pulmonary embolisms and regimen of blood thinners.

During those two months, the surgeon refused to see me. Surgery was done so I needed to go to a neurologist or PCP. At one point by primary care doctor told be to go back to Barrow emergency, make them check me in and refuse to leave until they fixed me, so I did.

They did an MRI, said everything looked normal and checked me out. Told me if I didn’t leave,my insurance would no longer cover my stay, so I left. It was after that when I ended up in another hospital with the lung clots. While there I developed I large squishy bulge on my neck at the surgery site. The doctors there confirmed with my surgeon, that I should go back to Barro for further treatment.

The bulge on my neck was BSF leakage. Had surgery to put in a patch to seal the leakage. During this time I still could not keep down food. They thought perhaps excess BSF pressure was the cause and decided I needed a shunt. They first installed a lumbar shunt, but it didn’t improve by balance or nausea. That was removed and they put in a shunt directly into the brain behind my right ear.

At that point they released me from the hospital and I went in to rehab at Barrow/St Joseph hospital for more PT for two weeks. When I left there, I had spent 56 day in two hospitals. I came home for further recover and OP PT. I couldn’t do the PT because of nausea. My balance was so bad, I could only walk with a walker. I was having vision problems and saw an occupational ophthalmologist. I signed up for home PT which worked out better for me.

Over time, two to three months, my balance improved, I could walk again with only a cane. Vision improved to where I could read again. The nausea went away.

Now, nearly four years later, I can walk unaided, but wobbly. Never rode a motorcycle or bike again. Can’t play pickle ball anymore, but I play golf regularly, but not nearly as well as before. I feel like I have coordination difficulty - always knocking stuff over or banging my hands or something Im carrying into counters. I get easily confused if trying to do calculations. I often have challenges communicating my thought, words just don’t come out right or elude me. Of course, much of this could be just part of aging.

I think I had a rough time going through this. It didn’t turn out like the surgeon assured us. But I was naive to think it would. I should had done more research and got another opinion, but then you have to have confidence in your surgeon. You should be able to believe what they tell you. Mine had an excellent background and had a lofty position at Barrow, one of the most highly regarded brain centers in the country. Still, brain surgery is serious business and there are no guarantees.

Would I do it again. Absolutely. My prognosis was similar to yours - an increasing chance each year that I would have a bleed. And the expected outcome wasn’t good, vegetable or death the most likely potential.

Our lives ( my wife and I) have changed, most definitely, from how we had planned. This past year Covid has probably had a greater impact than the AVM and surgery. I can still do most everything although maybe not as well. Life is still good and certainly better than the other option.

[mike_az_21]

Welcome to the board -

Well, I really can not speak on the location of your AVM - mine was in a way different spot & a different type - a left temporal-parietaloccipital dAVF

It blew, I had a bad bleed/hemorrhage slightly over six months ago - and, the neurosurgeons agreed that this was not my first bleed - but, by far the worst

My Onyx embolization was done by one of the best(if not the best) neurological institutes in the US(Barrow Neurological Institute)

They brought me back from what in my opinion was an impossible place to come back from the way I have - it was rough, I lost all mobility & couldn’t speak - only hear and see - I have made amazing progress, but post bleed this is very rare - from what I have learned on here

I was diagnosed with this at the age of 14, my parents completely skipped it & so did I - till this happened at an age of 39

Unlike you though, I ignored all symptoms - there were quite a few. But, I’m a hard headed guy(or, at least was) - so I brushed it off.

Since you mentioned weights & the gym - about 6 months prior to my hemorrhage, I blew spinal fluid out of my nose - again, pushed it all off

[Sharon_D]

Hi Laurence:

Welcome to best AVM support group in the world (just my opinion). I had a 4cm AVM in my Cerebellum that ruptured in 2014. Prior to the rupture, I had never heard of this disease. One minute I was sitting on the couch when a horrendous pain knocked me for a loop. When I woke up weeks later in the hospital, my AVM journey began. I had many of the same symptoms you described. I couldn’t walk, could barely feed myself and when I ate, all foods and drinks (coffee,tea, soda, juice) all tasted of Curry! Food became my enemy. I was dizzy and off balance all day, every day, could not read the left-hand side of a magazine because the letters had faded away, my short term memory was awful, but my long term memory was so on-point that it scared me! Because of the location of my AVM, Gamma Knife Radiation was the only option open to me. The AVM was too close to my neck muscles, so surgery or epoxy were not available to me. Gamma Knife is a long arduous process. Each GKR procedure takes 3 years to cruise through my body. So far I’ve had 2 and a small portion is still in my head. My 3rd GK procedure is scheduled for 2022. I have adjusted to doing things in a different way, but my life has changed in positive ways as well. I am a better person than I was pre-AVM. I’m kinder, nicer, gentler, more understanding, less judgmental, more loving, way more patient, more generous, I give and get more hugs, and I honestly like me more! Oh, I have bad days, down days, pissy days, but they don’t last as long. I’ve learned a lot about myself and others in the past 6-1/2 years. AVM’s take time. A lot of time. I would like to offer you my recipe for dealing with my AVM … P&P
(Prayer & Patience). I wish you well on your AVM journey. Keep us posted on your progress. We are here for you. Again, welcome.

Sharon D…

[laurence]

Hi Jim,

Thank you for sharing your story, it was very insightful. Sounds like you really went through it and certainly not something I would want to go through. This is one of the main things that I fear from going ahead with any of the procedures, but then the alternative of doing nothing could be far worse!

It’s so important to find a surgeon you can trust. I’ve seen a couple neurosurgeons and their style differs massively. One even told me to continue to lift my body weight as he said it wouldn’t make much of a difference! The other just says It how it is.

I’m glad to hear that despite all the complications that you are somewhat on the mends and improving as time goes on. I wish you the best.

[laurence]

Hi Mike,

That sounds rough. When I was in my teens I was always worried about my health. I think if I’d found out about my AVM back then I would be a nervous reck. In a way it’s good I’ve got to do all the things I wanted to. It’s just a shame I won’t be able to do pull ups for a while

It’s amazing to hear that you made a recovery from your bleed. Doctors always paint a grim picture, but they have to do that to prepare you for the worst case.

Thanks for sharing.

[laurence]

Hi Sharon,

Thanks a lot for your reply.

That must have been pretty scary. Did you feel any pain or experience symptoms before you passed out? I was told that I would pass out pretty quickly if I had a major bleed but if mild I’d get a severe headache.

I had no idea it can affect food in that way. Fortunate for me I like curry but I guess it’s different for everyone !

Thanks again

[mike_az_21]

Personally, I never gotten the pleasure to pass out - time lapsed a bit & I did pass out when I over doses at the hospital the night prior to my procedure.

I remember it all - it felt like a true living nightmare I couldn’t wake up from. When I got the diagnosis, I couldn’t believe it at all - on that Monday I went in for a tooth infection, dentist sent to me ER - I walked out of the ER with a brain hemorrhage.

[randombeggar]

Hey @laurence. Sorry you have to go through this but welcome to the land of the AVM’ers!

[xtina29]

Welcome, Laurence!

So glad you found us. When I was diagnosed in 2018, I was desperate to find someone who was going thru the same thing as me. I’m so thankful for this support site.

Like you, I’ve battled depression and anxiety for most of my life. I’ve suffered from migraines and was hospitalized for viral meningitis twice. In February '18, my then 4yr old was extremely sick. I was so stressed out with her one night because I didn’t know how to help her. That’s when I was hit with an instant headache–a thunderclap is how I can describe it. I ended up at the ER because this felt different, I just felt off.

When the doctor came back with the results of my MRI and told me I had an AVM I had no idea what she was talking about. I could tell by the tone of her voice that it was something bad.

They discovered I had an AVM in my right cerebellum. Approximately 2x1.5cm, and about 3mm lateral to my brainstem. Like Jim, I wasn’t given an option; right then and there I was told I needed an onyx embolisation because I had a leak that could lead to a full blown hemorrhage. I was told by my interventional radiologist that it was standard procedure, and that I would be out of the hospital a day after the procedure. The risks were explained, but described as minimal. Side effects if any, such as balance, speech and hearing would be short term.

My embolisation turned out to be the worst case scenario. I had a stroke during the procedure. I woke up unable to see or speak. The right side of my face was paralyzed and the only thing I could hear out of my right ear was this unbearable high pitched ringing. My vertigo was so severe that if I turned my head I vomited. I was in the ICU for 8 days, then moved to a regular room for another 3. I came home 11 days later with an eye patch (so I could see out of my good eye), a walker, and 15 lbs lighter. I started physical and speech therapy shortly thereafter.

I decided to do some research on AVM’s. I had no idea there were options in treating this disorder; I just knew I felt this constant panic and wanted my AVM out. I started contacting doctors known for specializing in AVM’s for second and third opinions. I spoke to Dr. Lawton’s team (Barrow Institute) who surprised me by saying there was no evidence of a bleed. They said it could be removed but there was a definite risk (40-60%) of permanent significant deficits.

That worried me.

I spoke with Dr. Colby, a senior neurosurgeon at UCLA, who told me the same. Moderate to severe deficits due to location with surgery. His recommendation was radiosurgery since there was no indication of a bleed.

Finally, I spoke with the Dr. Neil Martin (the Spetzler-Martin AVM grading scale doctor), who was brutally honest with me. I would not come out of surgery the same person. There was an 80% likelihood that I would be paralyzed on my right side; moderate to severe deficits in speech, balance, and motor skills–these would be permanent. He strongly suggested radiosurgery as well, saying this would be the most successful route, because (once again) there was no evidence of a bleed.

I cried my eyeballs out after that call.

I ultimately decided on SRS rather than Gamma, at the UCLA Medical Center. For me, it was the best decision I made. At less than one year after a single treatment my MRI showed over 80% obliteration–which I feel like is almost too good to be true, lol. I experienced fatigue and some hair loss. I am now post 2.5 years and am due for an MRA. An angiogram is a no-go for me.

My deficits today include permanent and complete hearing loss in my right ear. I have severe, painful non-stop tinnitus in that ear–it never goes away. I also have a loss of balance which I’m told is permanent, but I feel like it’s getting better. I do have to use a cane and I constantly bump into walls and wobble. I have trigeminal neuralgia on the right side of my face (painful nerve damage). My vision has improved as well. My doctor suggested prism glasses but I do just fine without them. Headaches are almost daily for me. Coincidently they’re only on the right/back side of my head where my AVM is.

Mentally I experience deficits as well. I feel like depression and anxiety are a given with a (new) life-changing diagnosis. I have a hard time communicating, again like Jim. I have words on the tip of my tongue that I just can’t seem to get out. Conversations are hard for me these days, sometimes I just brain fart mid-convo and completely forget what I’m talking about. My mouth doesn’t cooperate with me always–I slur certain sounds and words no matter how hard I try to say them.

I know you may feel a sense of urgency to make a decision, I know I did. If you’re leaning towards surgery I would suggest finding the absolute best doctor(s) and interviewing them, send them your scans to review. AVM’s are very rare, there aren’t many doctors out there who truly specialize in them. Not only that but the location of our AVM’s is particularly delicate; Richard touched on this in his post. Tbh I’d be suspect of a doctor who gave me a 98% success rate at resection. What is the doctor’s definition of “success” exactly?

For me, surgery was not an option. After hearing what all 3 doctors had to say the risks were certain. With radiosurgery they were a possibility, but at least it wasn’t definite.

Whatever path you choose know that you have a great support system here. I hope you’ll keep us posted on what you decide to do. Sending you good vibes and sunshine.Emoji

PS. Thanks to all who decided to read this long winded post. I felt so compelled to share with Laurence.

~Christina.

[DickD]

@xtina29

Nicely put!

@laurence Christina is underlining something that I was thinking (but giving your neuro very good credit for, and maybe that’s an issue) which is that 98% success on a cerebellum AVM surgery seems quite remarkable. Therefore, it is definitely worth poking that a bit and maybe ask the neuro why he or she is so confident. I assume you might be seeing someone at NHNN in Queen Square, so they should be pretty much the best, but the experience that Christina and Jim both give are from at least equally well-respected neuro specialists.

Somehow, I always like to be the person who encourages others along. This stuff is pretty frightening but there are often very good outcomes from neurosurgery or embolization or radiotherapy these days, so it is ok to encourage people not to be as frightened as we all are when we first get a diagnosis like this. However, (I’m not an expert) to me, doing this stuff in or near the cerebellum is towards the higher risk end of the scale, as far as I understand it.

I’d encourage you to have a read through the brainstem & cerebellum area of this site and get a bit of a feel for others who’ve had ops or “can’t operate” experiences. I’m hoping it will bring a bit of balance to your thoughts as I am sure we’ve just frightened you to bits. There definitely are others who’ve gone through ops.

Hope we are helping you.

Best wishes,

Richard

[Adrian1]

Hi @laurence sorry to hear about your AVM & I can relate with your story as I also didn’t think much of my diagnosis as I had no knowledge on what it was… unfortunately I found this site after my surgery & wish I had prior.

From my experience & appointments here are some things I have been told:

1. The chance of a bleed increases every year if left untreated E.G 1 year 2-3% then 2 years 4-6% etc etc.
2. Yes some ppl live a normal life and never experience any symptoms or issues… some may suffer a stroke in their 80’s & then find there is an AVM.

I was 30 when mine was discovered on a CT after a headache that went on for 1 week after lifting heavy weights… I was diagnosed on 23 December 2010 & had a neuro appointment on 22 Feb 2011 to discuss my case, however suffered a bleed on 31 January 2011… less than a month later after never having any side effects my entire life… great luck right! I had it removed via surgery on 23 February 2011 & this happened all so fast!

Ultimately the decision is yours but note all surgery or procedures will come with risks as they need to cover their backsides… with today’s technology you have far greater benefits & my surgery percentage rate was the same with 98% chance of success, which worked out fine… AVM was removed in full & continued follow up scans etc to monitor any reoccurrence with a recent angio in Feb 2020 showing all still clear!

Again it’s your choice you need to decide, however remember many can’t have theirs removed or operated due to location & much greater risks… also one Dr said to me it’s not ideal but at least it’s not a tumour or cancer, which is very full on yet true when thinking about the reality of it.

Please keep us posted & know that the journey is long but there is light at the end of the tunnel… was I scared about surgery… YES I was very scared! I suffer from anxiety so I understand it makes it harder to relax but it’s very important to keep stress levels down & keep positive as best as possible… stress won’t change the outcome & I decided when going through surgery that is was up to God to take the wheel on this one but I was going to fight to make it through & be ok… you may want to ask if you opt for gamma for example & suffer a bleed anytime before or during will it remove your options & then have to be operated on for removal anyway? I’m just trying to help you look at how to avoid so much mental heartache & stress in your situation as I’ve been there… God bless!

[Lifeisgood]

Hello, Laurence,

I know it IS terribly anxiety producing to be faced with the realization that an AVM is lurking in your brain. I am ALMOST pleased with the fact that I never had to make a decision regarding with which of the treatment options to choose. You see, my cerebellar AVM ruptured in ‘93. I experienced a sudden headache 36 hours after returning home from a vacation flight. I managed to call 911, and was sedated for an angiogram after a CT scan in the ER. The only option was surgery. (In those days, there were no other options!)

I survived, yet spent the next two months undergoing physical and occupational therapies, dealing with vomiting, dizziness, disturbed sleep, altered taste, and a variety of other issues. On top of it all, I developed an infection with MRSA (methycillin-resistant Staph. aureus). The journey was challenging, to say the least, and has been lengthy.

You have begun researching the literature and found this site. Very good. Try not to let it all overwhelm you. It definitely can. We will be here.

[Lulu1]

Hi Laurence. Great to have you with us and welcome to the group. You sound as if you’re in a reasonably similar situation to me. I’m from Milton Keynes, have a job I love and also a large right-sided Cerebellar AVM which hasn’t bled… For me this journey started around 1985 when I was 12. I got increasingly bad headaches and vomiting which at first started when I woke up and lasted around an hour. Later they got so bad I would stay in bed for days or weeks at a time. My GP insisted I had juvenile migraine but my mum hassled him until we got a CT appointment. Well, that showed a major CSF build-up and that I was about to haemorrhage. I had a Shunt put in and everything was fine for a few years. I thought I was cured. But 3 years later the symptoms returned and I had my Shunt revised. Fast forward to 1997 and I was offered an MRI scan which showed up my AVM! However I’ve always been advised to leave it be due to the size and difficult position. Even when I last saw my NS a couple of years ago he said this was the best option for me as obliteration is unlikely (and if any AVM tissue is left they can regrow). So I have made my peace with it all and accepted the situation. I love my life and just want to make the most of whatever time I have. Very best wishes and good luck with whatever decision you make. Lulu xx

[BoxBarge]

We are happy that you found this site, too!

[Teiry]

My first radio interventionist wasn’t as confident of his skills embolizing and told me in my case it was best to leave it alone. I listened out of fear… (BIG mistake. At the time I had felt confident and comfortable with my decision that when and if it blew up it would be my time to go OR if I survived I would opt to be embolized. Long story short everyone respected my decision and I did end up being embolized 4 months later one night my hydrocephalus acted up and my vp shunt malfunctioned, all that csf put pressure on my ticking time bomb of an avm and I had a hemorrhagic stroke
by a second dr who was confident and I completely out since I had had that stroke so my family decided as an emergency and since I had survived they went with my plan b that if I survived I would choose embolization. If you ask me now I wish I would’ve just embolized with my dr that did embolize me but before my stroke of course… unfortunately that’s not how destiny happened but Im grateful to be alive. I know that decision is tough. I’ll be honest with you. I am not paralyzed but I am now weak on my left side (hemiparetic) it’s taken 4 years but Im way much stronger now. Originally my fear of embolization was paralysis. I didn’t even pay much attention to the whole stroke part but I was made aware. Every angiogram you risk the same thing. And still no other stroke (I’ve had many). Everyone is different. Strokes are scary I’ve already lived through one but (almost) paralyzed is a risk I would be willing to take again if I could go back in time. Recovery is painful and a b*tch but just keep thinking if I survived what would I be willing to live through/with. The reason I word it like this is because unfortunately all of have think this

way due to the curse we were born with.
I don’t know if that’ll make your decision much easier or harder but it’s something to think about.

[ashleigh]

Hey Laurence,

Just wondering how you are doing and if you have made a decision yet?

My case is similar to yours in some ways but mine is on the right side and 2-3cm. I had my angiogram 4 weeks ago and spoke to a nurse a few days ago - she said that from my angio - I am definitely a candidate for Gamma knife… but also a possibility that I may be able to have embolisation! This is awesome as before the angio they wasn’t sure if I could even have treatment (was originally told it was too dangerous for the surgery & embolisation and that they weren’t sure about GK). The specialists have a meeting in 1-2 weeks to finalise if embolisation is definitely a possibility and then I will have a meeting in 4-6 weeks to hear their opinions and make a decision on what to do next.
I too was told that mine has not ruptured previously, that they are confident it will go in my lifetime, and that best case is left side paralysis and worst case it kills me.
I’m looking forward to the meeting I have so I can get more facts and figures on my particular case before making a decision and hearing their recommendations… but yes, I am also scared and hopeful that it doesn’t decide to rupture before that!