Just diagnosed

Hello,

An intro: I am a few weeks short of my 40th birthday, a dad of several and husband of one, and have just been diagnosed with an AVM.

A month ago I had an MRI for migraines, which I’ve had for 15 years. They found a lump that at first they thought was a benign tumor. A week later, I went back for a confirmatory MRI with contrast dye, as well as a contrast CT. This time, they realized it was an AVM. I was so pleased not to have a tumor that I deliberately didn’t research AVMs, so I had a few weeks of happy ignorance. I saw the neurosurgeon a few days ago, who confirmed the diagnosis, and here I am.

I don’t know whether the AVM is causing the migraines, since they run in my family. So I don’t know if it counts as an incidental finding.

The AVM is about 2.5x2.9cm, and is near my left temporal lobe. Since this is the speech and language center of the brain, I will have a functional MRI next week to see how close the AVM is to this area, which will help inform the risks of surgery. The surgeon initially discussed gamma knife, and said this would give rise to about a 20% risk of permanent neurological defects in my language processing abilities. I don’t know how he arrived at this figure. The statistics from the studies are better, more around 5%. I’m still trying to work out the discrepancy; I’m well aware that I may just be grasping at straws.

I’m still taking it all in; the last few days have felt like months. I was also diagnosed with ADHD a few months ago (probably not related to the AVM since executive dysfunction is associated with the frontal lobes). So it’s been pretty crazy. But I feel nostalgic for the days when ADHD was my biggest problem!

My next step is an angiogram, and then a second, third and fourth opinions from the best doctors in the world, and then I’ll see an estate lawyer to make sure my will and power of attorney are looking good. I have good health insurance for which I’m very grateful. I’m even more grateful that this MRI found it before it ruptured. (Statistically, if it’s been there from birth, it’s had only about a 45% chance of not rupturing up to this point, given a 2% annual chance of rupture.)

Biggest fear is not being able to work since I work in an area that requires me to use words all the time. I would honestly rather lose both legs than lose my verbal abilities.

I’m an expat: I’m from the UK but moved to the US about 7 years ago. I have had a visit planned for months and I’m told I’m ok to fly, but not looking forward to telling family.

I’ve spent quite a bit of time over the years studying philosophy and I’m a practicing Catholic, so I feel ready to face this despite everything.

I have a question about angiograms that I’ll ask in another category. Thank you!

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Welcome!

I think I went through much the same stuff as you. I think the key step you’re taking is to not take the word of one doctor for it (and I’m going to say especially in the US! There are some world class practitioners in the US and that’s the place to get your opinions from). So well done on that part of the consideration. I think that’s bang on.

In terms of talking to family, I kind of self-diagnosed my dural arteriovenous fistula because it was pumping blood past my ears. I did a bunch of googling and at the point I found a page on the American Stroke Association website about AVMs and DAVFs and pulsatile tinnitus (which was what I could hear) I realised I needed to see the doc. I was initially referred to ENT and it was me being blunt with the ENT guy about the PT that led to a diagnosis. He used a stethoscope to plot over my head where the bruit might be heard and he found it just over my right transverse sinus.

Upon getting that formal diagnosis, I decided I needed to be open with my wife about my “hearing test” in hospital that day. I put off telling my parents until I thought I was being drawn into hospital but that took so long in the UK, I ended up telling them much earlier than at the point of surgery.

My biggest worry wasn’t specific deficits but death, if I’m honest with you, so I worried about that. I found that wearing a medical wristband with my medical details on and my wife’s mobile phone number helped me to feel that, if I was suddenly found inspecting the carpet unusually closely, people might act more promptly and suspect a stroke than otherwise. It definitely helped me relax a bit.

I think the other thing was having this space: somewhere to express my worries without putting all of that on my family.

So I think you’re being nicely measured about what to do. I hope we can help you a little along the way: welcome!

Richard

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Welcome. I “had” a left temporal AVM that decided to show itself via rupture in May of 2016. I spent some time in hospital and then had Gamma Knife in November 2016. Mine was on the inner side of the left temporal so difficult to access via craniotomy. It was ultimately obliterated, the contingency was a second bleed would have resulted in a craniotomy. I was very fortunate it worked out the way it has for me.

I didn’t have to worry about breaking the news, it sorted itself out in a fairly dramatic way. I do like to be much more subtle but that wasnt the case here! Take Care, John.

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Hi,

Just wanted to say I know how you feel. I too was recently diagnosed, am now trying to gather as much information as I can to decide on the way forward. My son will be graduating from college next year, and my daughter had just completed her first year. I had been blissfully thinking of the next stage of my life, and now this. I am still having trouble coming to terms with it. I hope my faith can carry me through.

Josie

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Howdy,
my AVM is directly in what should be my language location. The unfortunate part is mine was found from a bleed. I was also considered for gammaknife (it was my only option), and they performed a fMRI to see if there was any risk to my language production. The reason I said “should be” in my first sentence is because they found my Wernicke’s area is on the right side of my brain, not the left. I got lucky, and went in for my gammaknife! Since I only had it two years ago, my AVM is still there, but my medical team reports good results so far. I was petrified in the beginning, but my fighting continues.

What did you study in philosophy? My degrees in philosophy, and currently work as a philosophy professor. We can chat philosophy sometime. My academic background really helped me get through all of this, and it inspired a lot of my research as well.

Reach out sometime.
Kev.

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Welcome to the family @EverlastingHills & sorry to hear about your recent diagnosis.

We are all survivors here & members are more than happy to provide their feedback & experiences to help out as best as possible… please keep us posted on your journey & know we are here for you during this tough time, however there is light at the end of the tunnel… God bless!

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Thanks everybody for the responses. My biggest fear at this point is that it will rupture before I can get it treated, although of course there is logically no reason it should be more likely now than it was for the previous 40 years.

My angiogram is in about 6 weeks (due to my long-planned international travel) but part of me thinks I should bring it forward asap. The surgeon didn’t seem to think it was urgent – he even said a monitoring approach “wouldn’t be stupid”, though overall he didn’t recommend it.

I was warned not to rush into surgery, but on the other hand, I want this thing out sooner rather than later.

@Kevphilosophy , really I’m just a dilettante and don’t have much of value to say to a pro! I’ve read some of Aristotle, Plato and Aquinas. The risk of brain damage certainly brings the mind-body problem into sharp focus!

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Welcome @EverlastingHills

As other have mentioned, I am sorry you are here, and at the same time you are in the right place.

As you, I was diagnosed in my 40’s, 44. It was really unexpected, with out any symptoms. I had a lot of tests performed back home in Guatemala, and in retrospect I was so lucky we found it.

We have a history of Vascular and Brain Cancer patients in my family, so for me at the beginning it was hard to understand.

Having said that, another way to look at it is, thank God you found it un ruptured. I would say there is a big difference to plan ahead around it.

My Dr @ Cleveland Clinic recommended dealing with as soon as I could. I had Gamma Knife, Craniotomy and wait and see options given to me. In the end after my Angiogram, some micro nodal aneurysms were discovered that in a way simplified the decision. We went with Craniotomy. Location in my Cerebellum, Grade 3.

Although recovery was hard, after surgery when I woken up, it was gone. Of course there were risks involved, but I am here and happy to be with my Family. As you, I am a practicing Catholic, and I am sure that all of us here have had Gods help, because we are able to tell our stories, and to help each other.

All the best to you

Francisco

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Hey @EverlastingHills,
Welcome to Ben’s Friends. Lots of good people with a lived experience around here, all willing to share their experiences. You’ve been given some really good information here already by the other members.

We often hear of the “Wait’n’Watch” approach when it comes to neurological conditions. For some people theirs maybe slower developing or have a lesser feed vessel, so slower progressing and the risk of rupture maybe deemed less. Let’s face it nobody wants brain surgery if it can be avoided, and monitoring can show the progression (if any) over time.

My recommendation here is to speak to your neurosurgeon. The air pressurisation of international flights can sometimes be problematic (this is an issue I’ve experienced previously) and if you do have an emergency situation overseas, how would you and your family manage? If you do follow through with your travel plans, PLEASE be sure you are FULLY insured. The cost of care overseas can be HUGE!!! The very last thing you want is to have an incident in a 3rd world country and not be able to get 1st world care.

Yea, that was my view too…“CHOP IT OUT” …BUT… … a word of warning… “be careful what you wish for”.
My initial neurosurgery was to ‘fix’ it all, but it didn’t. In fact it set off a revolving door of multiple neurosurgeries and the end result being far from anything like ‘fixed’. Some medicos like to use their %'s as a guide of risk, personally I don’t hold much faith in their figures myself. The risks are real, but if you’re on the wrong side of the %, the figure pales into insignificance. When I asked about ‘worst case scenarios’ I too was told ‘Death’. So, anything less than that is a good thing? Right? But for me, the outcome has been a very bitter pill to swallow.

Something that I MUST agree with is a comment from Richard:

Every Dr is likely to have a differing opinion, a differing approach and a differing treatment. To obtain a broad overview you may find you need to seek those differing views. My first surgery was an emergency, so I didn’t really have any choice. After my first surgery I went seeking a 2nd opinion and got some VERY differing views. Some shocking, some surprising and some agreeing with the approach already undertaken by the surgeon. But this gave me a more complete view by hearing those differing opinions, it also gave me some relevant questions to ask the surgeon.

Best of luck with it all and please do keep us informed

Merl from the Modsupport Team

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Haha, it certain does make me more so of the connection between mind and body. I must admit, it made me dive much further into concepts in the philosophy of medicine as well. When we cover that for a week in my college class, I am extremely excited. The students find it boring, but since a significant chunk of their grade is dependent on their interaction with it, they don’t have a choice lol. There is much philosophy to be discovered through it all!
My best regards through everything!
Kev