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AVM Survivors Network

Introduction--Brian in Iowa

I’m happy to be here and find a support community. (My youngest son is a cancer survivor and I benefited from a similar community for his treatment as well).

I’m 51 years old and was diagnosed with an AVM in May of 2017. (I am retyping some of this from my clinical reports from the Mayo clinic, as some of the details, particularly from early on, are difficult for me to recall from memory).

I suffered an intracranial hemorrhage while exercising. I initially wasn’t sure what had happened, but was very disoriented and had lost vision in my right hemisphere, couldn’t remember basic things, had a sharp headache, literally ran into the wall several times. I actually drove myself home from the gym and to an appointment before finally going to the Emergency Room where they diagnosed the bleed via a CT scan. I had an angiogram the following week and was diagnosed with an avm (left posterior cerebral artery, reading from the clinical report). Mayo assessed the nidus at roughly 2 cm (Spetzler-Martin Grade II or III, for whatever that is worth).

I originally consulted with the University of Iowa Hospitals, who suggested embolization and radiation. I sought a second opinion at the Mayo Clinic, who suggested surgical resection. We also discussed gamma knife and I eventually opted for that route (largely due to fears about surgery, although it was a difficult decision and I was very concerned about another bleed).

I continued to have issues with memory and being able to function mentally (I grew tired very quickly and was not able to focus or really work for several weeks), but those symptoms largely faded within 4-6 weeks. My vision, however, took quite some time to return and, while vision field tests have shown me to now be back to ‘normal’, I still experience issues with vision and often run into things, etc. (to the amusement of my sons).

I had Gamma Knife (stereotactic radiosurgery) in November of 2017, which they assessed as very successful based upon the location and size of the nidus, etc. (The procedure went well, but the fitting of the frame and recovery from that was, well, interesting and a bit traumatic mentally, but not awful).

I have generally been symptom free during the time since, aside from the vision loss I noted above. I have, however, experienced 3-5 incidents where some of the visual loss returned and I experienced disorientation not unlike what happened during my bleed. In two cases, I went to the hospital and had CT scans to check for a bleed and both came back negative. I have not been given a reasonable explanation for these incidents, but I do know that at least part of what occurs is some form of a panic attack or anxiety tied to my fear of suffering another hemorrhage (since I now know the seriousness of my condition, unlike at the time of the initial bleed). I will be going back to Mayo this year for another update and hope to get a bit more clarity from them on these issues, which are very distressing (if not necessarily medically serious). When I was there last year, they did not have any specific guidance or explanation for the symptoms I described and, based upon an MRI, assessed the treatment to have been successful. I believe I will have another angiogram in 2020 to more fully assess the effectiveness of the radiation.

I feel very lucky, particularly knowing how serious this condition is and how much worse things could have been. I cannot, of course, know whether my treatment decision was the best course, but I can offer thoughts on how my path went.

I wish you all strength and courage in this journey. My son’s experience taught me a lot about the importance of taking small steps and focusing on doing the next right thing, trying not to worry about larger issues out of my control.

Brian

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Welcome Brian! We’re somewhat similar in age and the fact that we had Gamma. I had mine in 2016 and have luckily received the results this past February that it is gone. Craniotomy was an option but presented a lot more risk given location. I looked at heading to Mayo in Rochester but ultimately was very satisfied with my euro surgeons here and ultimately with my decision. It did take 2 1/2 years to know if it was the right one or not! The fear of another bleed was certainly present but subsided for me over time. Once again welcome. Take Care, John.

Thank you for making time to write. It is really appreciated. I was aware of this site, but hadn’t taken the step of posting or introducing myself. I suppose part of it was not wanting to learn more about some of the risks of this condition.

I’m very glad to hear you got good news and am glad to be in touch. Enjoy the rest of the weekend.

I found this site incredibly helpful for me, such a varied group with such a wide array of experiences. I think you’ll be amazed at the care factor, by that I mean people legitimately care how you’re doing. John.

Welcome, Brian.
I had me aneurysm in 1973. The ONLY choice available to me was a craniotomy. I lived in fear after I got home from the hospital. I still have anxiety and some panic attacks which I am receiving treatment for. Daily doses of CBD have pretty much stopped the panic attacks.(Prescribed by my doctor) In the event I do have one I take a Klonepin, take a 3-4 hour nap and wake up stress free. I think it is normal to be afraid that a traumatic experience will reoccur. After years of no reoccurrence it is easier to think that it will not reoccur. For years I felt that any day could be my last. My bleed happened in 1973 and I am still kicking-lol. I was 16 when it happened. Good luck to you. I am glad people have more treatment choices these days.

Welcome, Brian! I’m glad that you’ve found this group. It has been helpful to me over the years.
I also had GammaKnife surgery…mine was back in 2008. My AVM rupture was in my right parietal/occipital lobe so I would lose the peripheral vision in my left eye. I no longer drive because of it, but I’ve learned to live with it. Besides, I get more exercise walking everywhere! :slight_smile:

I wish you strength and courage as well with your journey. I also wish you the best for when you get your follow up Angiogram next year. Hopefully you’ll let us know how it goes.
We’re here for you.

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Hey Brian,

Welcome aboard the crazy train…

No seriously, you will be blessed by being here, watching, listening, asking questions, sharing both the good and the bad.

Where I live in Michigan is well known as a bit of a dutch background. I’ve actually heard there are a higher population of people with a last name that starts with Vander than anywhere else (outside of the Netherlands). I think a close second would be where some of my relatives live in North West Iowa.

There’s a game we call Dutch Bingo. “Your last name is Smith from Sioux Falls, a friend of mine married someone who grew up in Sioux Falls. Any chance you know Jane who grew up in the house next to the church before going off to college?”
And the 6 degrees of separation theory works again.

I don’t know if any of the people I’ve seen before are still at Mayo - but every time we’ve been there we’ve come away impressed…

TJ______

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Brian, Welcome!

I had a dural arteriovenous fistula in the back of my head embolised in April 2017, aged same as you. Different place, different procedure but the thing I want to pass on to you is whether your occasional sight losses might be accounted for as a scotoma.

I had scotomas for a period after my embolisation and after my repeat angiogram and between me and another member on here, we put them down to the irritation of the contrast material. They faded within maybe six weeks after the surgery and I’d say two or three weeks after the angiogram (less contrast used for the angiogram perhaps).

A scotoma is most often (I believe) a migraine aura and mine started as a small teardrop blur just right and below centre of vision, then grew into a large jagged C shaped blur that obstructed quite a portion of my sight (both eyes, synchronously) before fading away, perhaps 30 minutes after. If your vision losses are anything like this, I thought it might help to give them a name.

I don’t think there is anything to do about a scotoma. Typically, as migraine aura, they would be benign. Obviously, since you have an AVM, they may be indicative of the AVM doing something or just the irritation of something as your gamma knife very gradually changes flows through part of your brain. Don’t know. But I hope might be useful info to check off with your symptoms.

Very best wishes,

Richard

Thank you for making time to message/comment back. I really appreciate it!

Thank you for sharing your experience.

I will look into what you mentioned. The vision loss does tend to resolve fairly quickly, which seems consistent with what you described. I do often wonder if part of the long-term affect of the bleed and/or the surgery might be some of these types of issues. I’m aware this is not a serious issue, but glad to get a bit of clarity and something to look into. (I oftentimes want to make bad jokes such as ‘this puts my mind at ease’; or, when a friend recently asked me if this experience changed “How I see the world”, and I responded “yes, it actually did…the vision loss at a minimum changed how I see the world”)

Brian

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Sometimes the little things can worry us disproportionately, so it’s a good thing to be able to share ideas and if that leads to you or your doctor determining that a scotoma, for example, is what’s going on, then it’s a great thing to have helped. It could definitely be to do with impact from your bleed, too.

Wishing you the best,

Richard

Hello Brian,

I, too, get recurring symptoms similar to my initial bleed 1.5yrs ago. January 2018 it was discovered that I have an AVM in my left occipital lobe when it bled. It was actually an ophthalmologist that sent me to the ER because initially a doctor said I was having a migraine, gave me a shot of Demerol in my hip and sent me home but my aura spots from the “migraine” weren’t going away. My ophthalmologist said anytime aura spots in our vision last longer than 20-30 mins than it is NOT a migraine, something else is going on. After a field of vision test showed I had a blind spot in both my eyes he sent me directly to the ER. After recovering from the stroke 5 months later ended up getting another CT for similar symptoms as the initial stroke: vision spots, couldn’t think clearly, bad headache, weak, very tired, words not coming easily, etc. CT revealed no bleed. So I inquired with my neurosurgeon why I had similar symptoms but no bleed. His reply was the brain has been damaged and is still healing. Anytime the body undergoes stress, overexertion, sickness, etc, it can create similar symptoms. So for me, it is a strong indicator that I am doing too much and need to rest, even 1.5 years after the initial stroke. I also have to be careful of what I eat/drink. One glass of red wine set off a terrible headache and similar symptoms the next day. At this point in time I have chosen no treatment. My AVM is a little larger than 2cm and I am also II to III on the Spetzler-Martin Scale. Both neurosurgeon and Radiologist give Gamma-Knife only a 40-60% effective rate for my size AVM and neurosurgeon gives me 50% risk of further damaging my vision with embolization and surgery. So with each bad headache/symptom I have to assess whether or not I think it could be another bleed which is frustrating and does cause anxiety. Good communication with my husband and doctor, keeping them apprised of how I am feeling when similar symptoms happen, help me to keep things in perspective while making sure nothing is being overlooked.

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