27 years old - Right Occipital ruptured AVM

Dear all,

I am a 27 french guy with a right occipital AVM (grade III - around 3 cm) that ruptured 2 months ago. I

This rupture left me with a hemianopsia/quadranopsia, short memory trouble, epilepsia and a huge fatigue.

In a few weeks (in January), my AVM will be removed with embolization + craniatomy (neuroradiologists will try do it the same day).

It has been a long time I have read all your stories, as my AVM was discovered in 2017 - but I will try to share my experience for those who might be in the same situation. I am also curious to know what is the surgery like - especially how the wake up will be…so I will look for some topics treating this aspect.

Thanks you :slight_smile:

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Welcome. It must be a relief to have a date set, I always find the unknown hard. I had gamma knife myself after a rupture, so can’t be much help in the treatment area. We do have a lot of folks who have had similar treatments and will likely share their experiences. 2 months post bleed is still pretty soon so the goal is slow and steady improvement. I know I got quite impatient, but love the saying forward is forward! Take Care, John.

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Welcome to the board! - that no one exactly wanted to be a part of

I had a rupture just over 17 months ago - mine was “cured” with “just” an embolization

After being a part of this board & doing a bit of research, it’s quite apparent that I was very “lucky” - the rupture did not leave me any deficits, the only things altered were my blood pressure & a almost constant anxiety - which both, I’m dealing with fairly well

Quite a few “resect” members on here & I’m not gonna sugar coat it - it scares the daylights out of me(I guess it’s a part of my anxiety)

Keep us posted! And, I/we wish you nothing but well -

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I had a right parietal / occipital AVM rupture 6 years ago left me with homonyous heminopsia and two strokes; I had two craniotomies, the first one what is emergent to stop the bleeding and save my life the second one was to resect the avm; I’m not going to sugar coat it, craniotomies are no picnic but once the avm is gone it’s gone permanently and that gives you peace of mind.

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Thank you for your messages and your support !

Regarding the treatment, my neuroradiologists (Fondation Rotschild in Paris) recommend the surgery following the embolization as there is 1/3 chances an embo is no enough. I guess they also want to reduce the post-bleed risk following an embo. On the other hand, an other neuroradiologist suggests embolization alone as surgery will probably deteriorate my vision, but I think i prefer to have the AVM removed as fast as possible…
There is also different points of view regarding the number of embolizations (one or several). On the one hand, they say the risk is cumulative with many embolizations (mistakes,…). Or the other hand, one embolization could “stress” the AVM and provoke another rupture. So I am a bit lost on this question too.

Thank you for your message mike - I trust you and I am glad you are still here :slight_smile: As my rupture was rather “soft” (I ve had no pain) I am a little concerned about the surgery. But lets face it !

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When I had my second surgery to resect the AVM there was a chance I would lose more of my vision and yes I was worried about possibly going blind but the thought of another rupture and possibly not surviving it worried me more so I went ahead and had it resected with no complications; at the end of the day you have to make the decision that you’re most comfortable with as there is no hundred percent guarantee with brain surgery but I wish you the best and good luck, just take it day by day and never give up!

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Hey Benji,
As someone who has gone down the neurosurgical route a few times, I MUST agree with Mike5 there are no 100% guarantees with neurosurgery, which ever decision you make. As you have found, some neuros will recommend a specific treatment plan, where other neuros may question that plan.

Now, my situation is non-AVM related but the initial plan was to operate, fix and everything returns to normal, only that didn’t happen. Three months later I was back having further neurosurgery, a craniotomy and I must agree with Mike5 "…craniotomies are no picnic…’

One thing I have found is every neuro has their own interpretation, their own views and opinions. It’s not that one is right and the other wrong, but rather an opinion from that specific specialist. I’ve had all sorts of opinions from ‘…leave it all alone, it’s too risky…’ to ‘…let’s just cut it all out…’ so I had to weigh up my options, for me. Again, for me, leaving it was not an option, but then neither was cutting it all out. It was all a bit close to portions of the brain I needed, so full removal was too big a risk, but a partial resection was one option given by one neurosurgeon and he did the surgery. Like I said earlier, things didn’t exactly go to plan, but I don’t blame the surgeon for that. In my opinion if they didn’t operate I’d be dead. I’ve just had to learn how to best manage where things are for today.

And once again I’ll just agree with Mike…

Merl from the Modsupport Team

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Hi, I can’t be much help as I didn’t need an operation, Had stereotactic radio surgery ( the old fashioned procedure for AVM) as it was 26yrs ago. Just want to wish you all the best.x

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Benji, I have a similar ruptured occipital grade 4 AVM and also have lost some lower left peripheral vision. The other problems you cite (memory and fatigue) were also big issues for me, especially the fatigue, man I was so tired I slept 12-16 hours every night for months. It took around a year to feel fully recovered and I still have the odd day when I feel ‘brain injured’. My visual memory is slightly impaired and this manifests in strange ways, such as difficulty using Google maps, and occasionally feeling disoriented in places I have been driving for 20 years! Two months is very early days, so I assure you that things will improve.

I can’t comment on the craniotomy as my AVM was deemed especially high risk for surgery so I’ve had SRS 2.5 years ago and am awaiting scan results.

Wishing you all the best for your treatment!
Jonny

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Hi Benji,

After the fourth hemorrhagic stroke I had a craniotomy to resect in the right occipital lobe. I was left with left-side hemianopia (permanently blind on the left of both eyes), lost 40% of my peripheral vision in both eyes, and have permanent functional vision deficits. I am grateful that i did not lose total vision. I also still get frequent headaches, of various sorts depending on the trigger. Epilepsy. Major fatigue. Especially brain fatigue.

I have been struggling with terrible anxiety and major depressive disorder as well. This has been a brutal experience for me but what i have learned is that it is extremely important for your family and care givers to be educated about what you are going through as well as mental health aftercare, which does not have to be forever. And that is for both you and family. I wish i had realized much sooner that is was struggling with mental health issues due these traumatic experiences. I wish that my family had been provided some type of education regarding signs/symptoms of mental health struggles. I wish that my child, who i raised alone through all of this had gotten counseling or some sort of mental health care as well. He was also traumatized by this stuff over so many years.

Also, i was so independent and determined to return to normal after the surgery that i went back to work only 2 months post op. For me, that was not a good decision. I should have taken more time for healing, for grieving and processing what happened to me. To realize i needed to understand my new normal.

I guess what i am trying to express to you is that it is very important to allow yourself to heal, to mental health care and, at least, education for family and care givers. And do not push yourself too hard, love yourself and care well for yourself.

And be a strong advocate for yourself.

Best,Teresa

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This is exactly how I feel as well. None of the routes forwards are risk free so you have to choose the option and the doctor you’re most comfortable with, for whatever the reason may be.

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Dear Benji,
I have an unruptured left occipital AVM, which I discovered in July this year. I had my first embolization in November. In January I’m having in Athens, Greece, my second embolization + craniotomy (on the same day) or just embolization and then, in spring, my third embolization + craniotomy. My doctors can’t tell me beforehand which of the two scenarios will take place. They will see in January, during the procedure, how far they can go and if they can proceed with the craniotomy then.
This is the first time I write in this forum. And obviously I can’t help you with your concerns, since I haven’t had a craniotomy yet. But just wanted to tell you that I’ll be thinking about you and sending all my positive energy for best of luck to you.

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Hey, welcome my fellow person with a right occipital AVM :slight_smile: you had less luck than me though I suppose since its ruptured :frowning: mine is around 1.5 cm, grade I - not sure yet if they are gonna do anything about it … boo. The migraines are so hard - did you suffer with them ?? Best of luck in your battles too :slight_smile:

Hey Mike5. I too also had a right parietal AVM. A craniotomy was performed to obliterate the AVM.
The surgery was “successful” in terms that the AVM was obliterated.
I woke up fine that evening and all of my senses were intact. However, the following morning I woke up and was paralyzed on my left side. I believe it was human error since my doctors did not visit me while I recovered in the hospital for two months.
After regaining my ability to speak, I insisted on a tougher regimen of rehab (as I was an avid runner & went to the gym 5-6 times a week).
I am doing better now but still have some left-side weakness, memory & proprioception issues. Lots of pain in my head still, at the craniotomy site, especially in the winter. Happy Holidays to you and best of luck on your continued recovery.

Hi Benji. Thank you for sharing your story here and I’m really sorry that this has happened to you. Just about one year ago, I experienced an acute brain AVM rupture in my left occipital lobe. My AVM was considered a “micro-AVM,” so very small. The day of the rupture, I experienced stroke and seizure and a very painful 5 hours or so before getting to the ICU just in time. 8 days after my rupture I had a craniotomy to evacuate the hematoma from the hemorrhage and attempt to resection my AVM. It was not successful the first time, probably due to the damage from the brain bleed, so I returned two months later for a second, and successful (!), craniotomy. The second attempt to resection the AVM worked and was performed with an angiogram and surgery combo so as to be sure it would work. Because of the small size of my AVM, I think embolization was never really an option in my journey. I am also young-ish and was otherwise healthy so that meant a good surgical candidate according to my neurosurgeon.

The outcomes I’ve experienced after both the rupture/stroke and two surgeries are: the exact same visual deficits you have (I’ve lost vision in all the bottom right quadrant and part of the upper right); definitely a number of cognitive challenges e.g. memory, divided attention, focus, processing etc; focal epilepsy (visual disturbances almost exclusively); and in the first 6 months lotttsss of fatigue like you. As others have said, so much sleeping and just feeling wiped out after the littlest things. One year out - I still get tired sometimes, but generally my energy level is decent. My visual situation has not changed at all. Some of the cognitive challenges have improved but most are all very present in my day-to-day life. It can be overwhelming, frustrating and just plain annoying sometimes!

I’ll tell you with all honesty that the first week after the craniotomy is pretty rough. I think it really can depend on a person’s individual tolerance for discomfort/pain. For me, some of the specific things I can remember are: feeling really confused about how to move my neck and upper body; lots and lots of tension build up in my neck and shoulders (good breathing exercises and relaxation exercises will be your best friend!); the side-effects of the high-dose pain meds i.e. confusion, very emotional etc.; the logistical challenges of having a big wound on my head (shower, dressing etc); a good amount of pain.

I will end my comments here but please know that I’m more than happy to speak with you more directly. I want to be sensitive to the group as a whole and how many are in uncertain situations and might not want to have all the details spelled out about surgery and recovery. Most importantly, please know that you have a group of folks here who really can support you albeit some who are an ocean away. Having an AVM is unique and is hard to explain to a lot of people so hopefully this community can help you. Very best of luck in the big steps you have ahead. You got this! - Savanna