Newly diagnosed brain AVM, seeking guidance

Dear Olive

My name is Francisco, 44 years young and was incidentally diagnosed with an un ruptured grade 2 AVM in my Cerebellum right side. This amazing site and community rallied around me almost a month a go, and this is my first post since treatment. I will attempt to answer by my experience:

  1. No symptoms, found it on a check up that included MRI
  2. Live in Guatemala so I had to make travel arrangements to seek more information and treatment
  3. On June the 1st my wife and I went in to see Dr Marc Bain and Cleveland Clinic, Ohio. He confirmed de AVM and suggested an angiogram and new MRI. He suspected Craniotomy or Gamma Knife as way of treatment. He advised that avm’s on the lower part or back part of brain carry some more risk.
  4. On June 6th I had angiogram and size, sources and 3 aneurysms where located within the AVM. Surgery was set up in event that was a route for next day.
  5. On June 7th I had de craniotomy (6hrs), and according to Dr Bain and a second angiogram everything went according to plan, resection completed.
  6. Stayed at Hospital till Friday, and moved into a Hotel that same day, by the Clinic.

To start I feel grateful, very grateful to be able to tell this story, I was advice that craniotomy was my best option considering location, time and aneurysms.

Of course recovery is was it is, I can talk, think, see, walk, with walker now but getting better I hope. I still have 4-6 weeks, or more of recovery and patience.

I want to thank this wonderful community, and hope to be able to be a part and help a long the way.

All the Best

Francisco

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I currently have a 13-year-old brother that is in a medical coma because he had a severe rupture from AVM and my family is very worried. When I read your story it gave me hope because he is going through something similar to your first rupture and you were able to still have your life.

Anyway, I wanted to ask you about your long-term effects after your first rupture (if you had any), and did you notice a difference in your personality?

I know everyone is different but yours sounds very similar.

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Hi Mikayla. I’m sorry to hear of your situation. I am not a doctor and have no medical training just to set that straight. I have had three AVM ruptures and a stroke. After the first bleed I was generally okay with still a cocky spiteful attitude. Then that same summer of 2000 I had my second bleed. After that one, I was comatose for a time. When I woke up I had no use of left side. I had to undergo intense physical rehab just to get back up to where I could even stand. I noticed after second bleed a minor loss of peripheral vision. After third bleed I lost most of peripheral on both sides. Then in 2018 I had a stroke that causes me to lose all of right eye vision and most of left.

That’s the bad news. The good news for me was that I had a number of “helpers” along the way. In 2000 I had my speech therapist and my father and mother work with me and patiently work kindergarten through 12th grade again. I had my amazing wife, Leslie who put up with me, bathed and clothes me when I couldn’t move my left side. I had different counselors from church and a speech rehab counselor that were integral in getting me motivated to learn. Finally, I had a counselor recommend I write it all down which turned into my book “Malformation: when bad things happen to the right kind of people” which I wrote to give other survivors and their caretakers hope. Check out www.mymalformation.com. Grace & peace as you continue, blessings as you go!

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Firstly welcome to the family!

Like yourself I had a right frontal lobe AVM & it was removed with surgery as I suffered a bleed a month after my diagnosis… I didn’t have a choice but can say it was a lengthy recovery but overall worth the outcome of being AVM free.

I was 30-31 at the time in 2011 & was told my age was a good factor in successful surgery & recovery… I would definitely follow the advice of the medical experts & seek other medical opinions if you feel you need to… it’s not an easy decision but you will need to make one that suits you & what you’re comfortable with.

Like any surgery it takes time to recover but you also need to weigh up risks & pros/cons of both treatments… I didn’t suffer from any symptoms prior to my AVM discovery, which was also found by coincidence after a CT while experiencing a three day headache after the gym - also unrelated!

Wishing you all the best & please keep us posted… sending prayers your way… God bless!

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Hi Olive,

I’m in a very similar situation as well. I’m 20 and found out about my grade 2 left temporal lobe AVM (un-ruptured) about 11 months ago through coincidence as well, a CT scan to check for concussions which was done after I had a skating accident LOL (all’s good now, just fractured a few bones on my face which have healed).

I just completed an angiogram last week (first one) at the UCLA Medical Center and will have a follow-up soon but my neurosurgeon gave me a heads up on the same day telling me that everything looks like it’s all in one compact area.

When it came to AVM symptoms, I always thought that feeling a pulsing sensation on the left side of my head after working out, running, playing sports, or just lifting something heavy or walking up a couple flights of stairs was normal… turns out… it is NOT. I played basketball all 4 years of high school and felt this all the time thinking everyone else felt it too… mannn was I fooled.

Anyways, I’m currently 95% sure I will opt for surgery as a few of the neurosurgeons I’ve talked to all pointed me in that direction since, for my personal case (aka young, healthy, grade 2), it was less risky in the long-run than having radiation.

I was also looking at some research you might want to glance over or present it to your doctor(s) if you’d like, it was very informative for me: Current surgical results with low-grade arteriovenous malformations - PMC

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This is encouraging but it is a relatively old study (2015, with patient data stretching back as far as 2009, if I remember correctly). The one caveat that one of the co-execs at Ben’s Friends has indicated to us in an earlier conversation is that improvements since 2017 make older studies less reliable. So, for example, embolization as a sole treatment may be more effective these days than back in 2009-2013 where the study data for this report comes from.

Hi @Olive, just here to say hello, welcome, and thanks for sharing your thoughts and questions. I’ve appreciated reading through the responses as I am in a similar situation - Grade I AVM diagnosed about a year ago as an incidental finding when I had a CT scan after passing out (they say unrelated) and hitting my head. It’s unruptured and I have not had symptoms. I’ve been told that either surgery or cyber knife are possibilities to treat it and am still sorting through my decision. All the best to you as you weigh this for yourself. I’d be interested to know what you decide!
Kristen

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Hi Olive,

Everyone here has been or is where you are right now: frightened, confused, and overwhelmed with information overload via the internet. I wish this forum was around when I was experiencing what you are. My circumstances were similar to yours: my AVM was found just by chance. See my story in my profile.

I’ve subscribed to a simple philosophy most of my adult life: if there’s ever any doubt, there is no doubt.

Contemplating the risks of surgery for an unruptured AVM is indeed frightening and daunting. Mine too was unruptured. But after researching and asking a lot of questions and prior telling my surgeon I decided to have surgery, he said that given my age, health and physical fitness, the short term risks of surgery are far less than the long term risks of a likely rupture. Particularly if it occurs during an older age.

Also, I was single with no children. So I had no dependents. This made the decision a bit easier (though not easy). Discuss everything with your family. Do, but don’t overdo, your research. Ask lots of questions. Then decide.

If you decide to have surgery you must believe that there is no other option but a full recovery. This is my way of thinking. Get into your mind all will be just fine.

And reach out. We’re all here to help.

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Hello.Mine just ruptured no warning. I went thru many drs, wasted my time in Nyc on a procedure they couldve done here. Today i have no dr/neurologist because mine skipped town. But that’s fine by me. I quit those kinds of drs. I’ve just got out of my local hospital here, some nurse was trying to make me feel guilty about it but hey It got too painful for me. First they had to take the stupid pictures thru my groin which is as painful as Hades. Then the torture of the actual embolization. If you don’t think they are painful you must be paralyzed. For some reason i have a hatred for physical pain, can anyone tell me why? But i am happy with my decision and hope to enter a nursing home someday. Can’t wait actually.

Alison

Hey Olive,
My name is Julie and it seems like we have a lot in common at this time. I’m 31, and just found out I have a grade 4 AVM on my right frontal cortex. Decision making over treatment has been very difficult. I’m blessed to have a lot of support from my family but it can be overwhelming. I was diagnosed about a month ago and will have surgery at the end of this month. I feel like I’m just getting over not being able to go outside or drive any time I want. My life has changed so much in such a short amount of time. I could go on but to say the least, it’s a lot.
I try to focus on what I’m learning through this experience, including asking my friends and family for what I need (which was difficult before) and trying to hold on to the gratitude I had leaving the ICU. I’ve never been happier to do the dishes :blush: best of luck, open to a dm

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Welcome, and it’s great you found us, unfortunately you had a reason to look!. We have a really outstanding crew of folks with a wide variety of experiences. Overwhelming is a frequent term when we first learn about our AVMs, and almost always fear in some capacity, particularly early as we learn. Sounds like things are happening fast for you, decision made, that is a big one as well. Know we will all be with you at the end of the month! Take Care, John.

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Thank you, John!

Girminator-

The pulsing in the head!!! Absolutely, I thought that was normal too!!! I’m also very active and roller skate on ramps and would have a pulsating headache only on the right side, like I could hear it in my ears. I also have had a lot of ear aches on that side, doctors would say nothing looks wrong and send me home with drops or antibiotics just in case. Looking back I wonder if it was my AVM also, which is almost right over my right ear :thinking:

Ahhh man the angiogram through the groin does hurt, so bad. It’s been a month and a half and mine is still sore sometimes, although I stretched like a seal when I got home from the ICU, they sent me on my way on some pretty heavy medication so it didn’t seem painful then, but boy the next day it did.

I never get any pain medication after my angiograms or any surgery. I guess they expect me to suffer.

Alison,

I didn’t get any either. I would think that Tylenol would be the thing to use if you have pain post angiogram. We need to cheer you up a bit. It sounds like you’re having a tough time.

Lots of love,

Richard

Hi and welcome! Sorry you’re going through this but so glad you found this group! I figured I’d mention, if you have to do any more angiograms, Duke University Neurosurgery does theirs through the wrist which is significantly easier in recovery. I’ve had both types with surgeries and procedures to boot. Check out my book “Malformation: when bad things happen to the right kind of people” from Westbow Press (www.mymalformation.com. Blessings as you continue, grace & peace as you go!

Randombeggar I’ll check it out in a minute. How long do your angios usually last? Mine are at least 45-60 minutes.

Tylenol helps some but I’d like to have something stronger. Well i probably would be more cheery if i had a normal life. A husband. A couple of kids. Decent house to own. A pet. A vehicle all of my own. Last but not least a good job or career. And no illness of any kind!. This paragraph is directed to Richard.

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For the groin it was dependent on the backup in the operating room. I was pretty groggy afterwards but fine. For the wrist angio at Duke, I was out all day and slept some the next day as well. Talk to your doctor for your situation. Hope all goes well for you!