Diagnosed with 3cm AVM on left side of brain

Hello I’m posting here to get more information on this condition I just found out I have. Little background, I’m a 27 year old Hispanic male adult. I work as a police officer and am very fit, lift weights and run numerous miles weekly. After a shift I came home, fell asleep and woke up in the hospital after suffering a seizure. Scan revealed the AVM, was referred to Stanford Hospital to see a neurologist on Monday. Hoping to get some insights on what I can expect my limitations to be as far as work going forward (should I expect to be off a long time/or never go back), fitness, lifestyle changes

This is what a friend at the hospital told my family after talking to neurologist

“Hey I spoke with our neurologist Dr. Rehman. Did he have an EEG? Was the seizure caused by the AVM? Basically he wants to know if the AVM is ‘symptomatic.’
What side is the AVM located and did it cause any effects on the opposite side of the body/face. Main concern would be risk of a bleed because the AVM does not have a vascular wall. He was very curious to know if there was evidence of a previous bleed or any type of micro leak.
Depending on these factors he would either do follow up appointments with yearly imaging or recommend Gamma knife surgery (however, if it’s close to the brain stem they won’t touch it.) He said that based on his age he would try to avoid surgery as much as possible because of the increased risk of seizures, brain scarring, or incidental brain damage. He said optimally they would monitor with yearly scans and weigh risk vs reward based on imaging and symptoms.
IF he were to need surgery Dr. Rehman stays the best are UCSF and Stanford. BUT that there is also UCLA and Fresno. He says he likes the way UCSF and Stanford map out the brain before the surgery and that’s where he refers his patients.”

About a year ago I had a work incident where I fell 12 feet off a freeway, landed on my head and suffered a concussion/orbital fractures. Anyone have similar incidents where they had success attributing the AVM to head trauma? Any advice going forward?

Hey, welcome to avmsurvivors!

We aren’t doctors but we have been through the same stages of OMG as you and we can answer some of your early questions.

I don’t think the neurologist will know enough to understand what might be ahead. They are right about much that was reported to you but the first step will be to understand the AVM and where it is. For that, most likely, a MRI and subsequently an angiogram will be ordered to see the layout in detail. If it presents a bleed risk and is in an accessible place, either open surgery, endovascular embolization and/or radiotherapy may be recommended. Usually these are undertaken by a neurosurgeon or an interventional radiologist, so you’d want the input of those specialities to understand the best option for you.

If you’ve got a diagnosis already, then you’ve probably had the MRI.

So the next question is to find out whether treatment is appropriate.

The risks with one of these are as reported to you: principally that the AVM is a direct, high pressure connection between an artery and a vein, where your arteries are designed for high pressure blood but your veins are not, so the main risk is that the vein ruptures under the pressure of the erroneous flow. More than likely you’ve had it from birth; I’m less clear whether these ever emanate from a trauma.

Meanwhile, I was recommended not to do any straining (pushing weights in the gym I think should be avoided) and indeed coffee, chocolate, alcohol, smoking and anything else that might spike your blood pressure and risk a bleed. It is important to carry on with moderate exercise, however. If you have treatment, these restrictions can usually be lifted.

It’s great to have you. I hope I’ve started to answer a few questions. Ask anything you like: that’s what we are here for.

Best wishes,

Richard

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Hi @Herna31f
welcome to the community! I hope you can find resources and firsthand experiences that may provide you with information to better guide your journey, that was definitely my case. I think @DickD went through the general starting process really well, I will give you some background on my experience that was fairly recent to see if it can help.
We have something in common, we are both Latin, I am 44 years old. Though I live in Guatemala City and had to travel to the States for treatment.

  • I was diagnosed with a grade 2 AVM in my right-side posterior, Cerebellum just 2 months ago on a routine checkup I had been postponing since I turned 40. I had no symptoms and lived what I thought was a normal active life with exercise every day.

  • As @DickD mentioned, you probably had it since birth, just as me, and we have been lucky they had not bled. As you probably read, the veins within the AVM can bleed at some point.

  • I went through every emotion you can have, from being scared, denial, worry, sad, encouraged, and many more. I have a beautiful wife and 2 beautiful daughters.

  • I went through Google and found out everything I could about AVMs, and I found this community as you did that helped me very much, at the same time I read everyone’s different posts and was encouraged and at the same time scared, I believe it is normal.

  • We researched most Hospitals that had good rankings in Neurosurgery, Stanford, Mayo, Cleveland Clinic, Barrow and others. I think that any of these and others like these are all pretty good.

  • We ended up deciding on Cleveland Clinic Ohio after reading, talking with people who knew it and also on this community I read several posts of other AVM survivors that went there.

  • On Jun 1st I saw Dr Marc Bain, Neurosurgeon who has based a good amount of his practice on AVMs. He sees around 100 AVMs in a year, so for something that is very odd, that number seemed important.

  • As @DickD mentioned, the first recommendation was doing an angiogram and a new MRI. Dr Bain thought at the time that because the AVM seemed superficial, and the location permitted it, that craniotomy would be a good option, Downside being the obvious of brain surgery and recovery, but that the probabilities were very good. He also mentioned that information they had gathered through time suggests that AVMs that are located in the bottom parts of the brain have higher probabilities of bleeding. Probabilities not a certainty.

  • On June 6th I had the angiogram that confirmed the AVMs location, size, flow sources and 3 small aneurysms within the AVM. the decision was more practical after wards because Gamma Knife was an option, but it can take 2-3-4 years to work,

  • On June the 7th I had the craniotomy, 6-7 hours and everything went as expected. I waked up in ICU around 5 pm, asking for my wife, talking seeing and thinking well. I was discharged 3 days later and stayed in Cleveland Clinic Hotel for physical therapy.

  • My recovery is mostly a balance issue that has been going better and should continue to improve. I am back in Guatemala now and expect around 8 weeks to recover (this coming Tuesday it will be 3 weeks since surgery). Not easy of course, but no AVM.

I would encourage you to research the Drs in the hospitals you are looking at (Neurosurgeons), get to know their background and how many cases they see each year. Your AVM being 3 cm has several alternatives for treatment which is good. And also, it seems you caught it without a bleed, that is blessing that not many of us have.

If you have any questions, please reach out and I hope you can have an action plan soon.

Best

Francisco

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Hi Herna31f, I had an AVM and had to have a craniotomy because it began to seep blood. I had no warning and I was driving. I lost vision in my left eye and when I made it home, I couldn’t find my words. Thinking it was a stroke, my husband rushed me to the ER. After lots of tests, it was a dural av fistula and they had to do an emergency craniotomy. This all took place during Covid so my husband wasn’t allowed in the hospital to even “interview” the neurosurgeon. The good news is, you do have time to choose a neurologist and your health care team at this very important time. It is a scary time and I will be praying for you. Reading posts in this group has helped me not feel so alone.

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Oh, Francisco’s post had some wonderful advice.

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As did Moderator Dick.

Hello,
How about that the work incident happened from your AVM/Seizure? Was the cause that you feel clearly work related?

What did you ended up doing to your AVM, did you treated it if yes how so, etc.

Isn’t your work causing high blood pressure which is a known potential risk for AVM’s?

Sorry to hear about your diagnosis!

It is likely you were born with the AVM and it was not caused by your accident… please keep us posted on your journey as you will get through this hurdle and we are here for you… God bless!