Hello Recently Diagnosed, would certainly appreciate comments

Welcome & Help New Member Introductions
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Hi everyone. I really appreciate this site just as most of you have commented on your posts. It has been overwhelming and nice at the same time reading about all of our different stories, backgrounds and diagnosis. I am very new to this I have recently been diagnosed with AVM, Grade II right cerebellar. I will try and make this post to the point and give some background and questions.

44 years, live in Guatemala. Married with 2 beautiful kids early teens. My AVM has not bled, I have no symptoms either. We caught it in a Total Body check up that I have been postponing since I turned 40. I have had what I would say are poor conversations with doctors that either know too little or show little interest. Most agree I need to be checked by a very good Neurosurgeon, and that is our plan. We completed my paper work and are waiting for an appointment at Cleveland Clinic Ohio. I know Cleveland Clinic well, we took our dad there in 2004 for a brain Tumor, sadly he passed away 20 months after diagnosis. So, you can imagine my surprise and overall heavy feelings when I got the call that I needed a MR Angiography, which I already did and it was confirmed.

I have gone and am still going through many of the feelings, doubts, fears that have been described in many of the posts. It is truly helpful to know that we are many, and in many ways not alone. I like you have read and read most of what I could find in Google, and it seems that my case is a probability case. I suspect I will find out more soon, hopefully, when we get to Cleveland.

I do have some questions that you could help me out with, please:

  1. what changes in my life should I make? I exercise regularly, no hard weights or anything. but jogging, elliptical, cycling, rowing, you know the basics for a 44 year old :sunglasses: should I try and keep my pulse at certain levels? I don’t want to stop exercising all together as much of my stress relief comes from this.
  2. should I eat differently? I eat most stuff except pork. I love coffee, 2 cups a day. sweets? more veggies? I would say my body frame is average / slim.
  3. can I have some drinks with my wife and friends? just normal as I used to do? Can we go to a loud concert, would that be mad???
  4. Can I travel by air (no option here)? change altitudes easily. It may sound Dumb, but I have no clues.
  5. If my AVM bleeds, what are the signs I should be aware of? What should I do immediately?

And finally, if a specific procedure like GK or other is recommended are available, should I considerate it balancing risks? I ask this because I saw first hand how my dad’s brain procedures affected him profoundly.

I have to say I am still confused, scared, mostly I just hope my kids have their dad around longer. Thank you for reading this and thanks for this site.

Best

Francisco

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Hey J
For a starter your confusion, your fear, that’s normal I can assure you. This is not ‘Normal’ and it is scary.

I’m going to ‘try’ and answer some of your questions. I’ve required a few neurosurgeries and I have to say no two surgeries nor recoveries were the same. My self expectations were surgery, a weeks recovery then everything goes back to normal, only that didn’t quite happen. It took me months to function properly and my stamina just plummeted. Tasks that were simple now take planning.

In all honesty, I think questions 1,2 and 3 should all be answered in consultation with your dr’s. If you are at risk of rupture for example or have a family history or have co-conditions etc which could contribute then a professional opinion, made with all of your relevant reports/scans/tests available is needed. For example you ask about drinking, but we’re unaware of any medications which could interact with alcohol and this ALL needs to be taken into consideration.

You state “I exercise regularly…”. My best advice here is listen to your body. It will tell you when enough is enough, but only if you listen. I didn’t listen. I tried to convince myself I was building stamina by pushing that pain barrier, but I pushed too hard, too soon, resulting in more neurosurgery. Ahhh, my advice… …Don’t do that. My body was giving me signs which I ignored and I kick myself every day for that. Those signs may be subtle in the beginning, but ignore them and it can be dire.

Air travel - Post surgery my wife and I went to Europe from Australia. The long haul flights (Oz to Dubai-Dubai to London) no problem at all. Whilst there we went to France (via train) and flew back from Amsterdam to London. That short flight across the channel and my head was ready to explode, the pressure was MASSIVE. I think on the longer haul flights my system had time to adjust to the pressures, but the short flight was too short and my ICP pressures went haywire. My head was ready to explode.

I am yet to hear of 2 people having EXACTLY the same experiences on this journey. Like I said earlier none of my surgical journey’s were the same. Some people can come through it all almost miraculously, some can have slight or smaller impairments and others can have ongoing issues. There really is no gauge. One thing many people report is an ‘icepick headache’ like someone hitting you in the head with an icepick, like the worst pain you’ve ever had, that is a fairly clear sign there’s a major issue, get to a hospital NOW. Some people report visual issues, like auras or stars. For some it’s like one side of the tongue tingles or goes numb. So there is no universal ‘Big Red Flashing Sign’ that everybody who ruptures gets, it can be very individual. For me it was like every ache every pain and I was thinking ‘Ohh, is this it???’ but over time I learnt which signs were OK and which were ‘ACT NOW’. You too will learn yours.

Here at Ben’s we have many members who have been there too, we know what it’s like because we’ve lived it too. So, come talk to us.

Merl from the Modsupport Team

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Welcome J, its great you found us and I hope we can help some. I’ll certainly agree with Merl, the range of emotions is something I had never really experienced before. I had a bleed so I don’t remember a number of days but when recovering, everything ran through my head. I was 48, and that is over 6 years ago now.

I exercised regularly, and was limited to walking for a couple months and in consultation with my Dr, was then allowed light weights and running. Several months later it was basically do what my body will allow. I had gamma knife in November of 2016.

I switched up my diet some, but that was by choice. I cleaned and leaned it up some, cut back on some carbs and upped the fruit and veggies. Overall it was just a plan to get healthier. I did quit drinking alcohol for a while but again, by choice, and the dr had said it was fine to have a beer when I asked. I have been a very moderate drinker since, but sure do enjoy a good cold beer on a hot day! Its likely good I live in Canada and am still waiting for that hot day so far this year!

I went to a Carrie Underwood concert with my daughter about 6 months after my bleed, it was fine and really a big moment. Even a couple months earlier I would not have dreamed of going to sit with 20k close friends and listen to really loud music. I have likely been to 20 concerts in the last 6 years.

In respect to Air travel, I went to Hawaii 7 months after my bleed, and 2 months after gamma knife. I was told the pressure was about the same as living in Denver so not a factor as long as the cabin doesn’t depressurize. I was willing to take that risk!

If your AVM bleeds you will in all likelihood have the worst headache of your life, from what I know is the first and most obvious sign. I had the headache, lost my short term memory, one pupil was dilated and I was sensitive to light and sound.

Hope my experience helps! Cleveland Clinic is very well known as very good for sure, and when I decided to go with gamma it was based on risk and recommendation, mine was deep and a craniotomy would have certainly produced deficits that were less likely with gamma. The risk was a second bleed in the interim, which fortunately did not occur. Take Care, John.

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Hi Merl, I appreciate your message. Makes sense and clearly comes with experience. I agree that with a Drs consultation I may have a better understanding of what and what not to do.

I also have been advised on trying not to read and read so much on AVM, that is hard. I think its human nature to try and find out more, and hope there is some good news to read. Anxiety is the hardest to control, the not knowing what comes next, will it come next.

I do know that being a parent, husband and family member I need to put on my best attitude and poker face so that we can move forward as best as possible.

Thank you,

Francisco

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Hi John

Thank you for your thorough message. You touched base on many of my doubts. I am glad to know you are doing fine and getting on with your life.

Can I ask, so at 48 you had your bleed? Did you know you had an AVM before that? Does any particular age group have more probability to bleed? I know the last question is hard, I ask because I don’t yet have define travel plans.

Thank you for your time and support

Francisco

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Francisco,

Welcome! It’s great to have you join us, though not the best club to be a member of!!

I discovered my AVM aged about 50 because it was discharging into my right transverse sinus (occipital lobe area) and the turbulent blood flow passed through my sigmoid sinuses and I could hear the noise! It took me from Sep/Oct 2015 when I could first hear it to April 2016 when I managed to Google AVMs to getting a first hospital appointment in Aug 2016 and finally an embolization in April 2017 and I managed to avoid a bleed. I felt my AVM (which was classified as a dural arteriovenous fistula by my consultant interventional radiologist) was developing quite rapidly over time.

I arrived here in September 2016 just as I was waiting for my first MRI scan, and just as perturbed as you are by the strange and unwelcome turn in the road that I was suddenly following. In the same way as you, found encouragement and scary stories of the others here in about equal measure. So, what I’d say is you sound like you’re doing something a bit like me: no bleed but worrying yourself to bits.

What I’d say is, if you’ve found this thing as an incidental and it’s not giving you any symptoms, it’s entirely possible that you’d never have discovered it and would have made it to retirement without trouble. AVMs are generally expected to be congenital and so you’ve had it forever without it giving you trouble. So in your mind, put away the idea that it is suddenly going to bite you, just because you now know that it is there. It seems unlikely.

We do know, though, that there are risks with these things, so it is the right thing to get checked out and the recommendations of an AVM neurosurgery specialist sought out.

While I was waiting for surgery, I was advised to avoid things that put your blood pressure up, so things like coffee/caffeine, chocolate, alcohol, smoking were to be avoided. Lifting heavy objects or straining of any kind likewise. These are simple self-help measures you can take to reduce your risk of a rupture. It’s good to be able to do something positive in the circumstance you find yourself in. Otherwise you can feel a bit helpless, so doing small things can help you mentally.

Ask anything you want. We’ve been through the same scary path and (importantly) come out the other side.

Best wishes,

Richard

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Dear Richard,

Thank you for the detailed message. Very very helpful. It is very encouraging to know other people with similar paths, even if it is only a blog. I greatly appreciated your explanations on your side and also for providing your time with my questions. I would like to ask if you where advised not to exercise? Or just to walk or similar? Did you and other here had conversations with your family (kids) about diagnosis?

Thank you

Francisco

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Yes, I had a bleed at 48, and had no idea I had an AVM prior to that. It was a surprise, and then after I got out of the hospital, my memory wasn’t great and I had to keep asking what it was that I had. Luckily that corrected!

In respect to odds of bleeding, there is a great deal of information out there, I’m not sure which is most accurate. Like Richard says, you’ve had this since birth. I read about odds per year compounded, and then some other data that the odds become less likely once you get older, not sure of the age. My recommendation is to have the conversation with the neuro folks. Take Care, John.

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@JFrancisco

I think @JD12 was advised to go easy on the exercise but you’re already not doing big weights etc. Take the view of your doctor but my view is that moderate exercise is good for you, so don’t quit altogether.

Regarding telling my family, I think it depends on the ages and abilities of your family.

I told no-one while I suspected myself but I had an appointment with an ENT consultant at the end of August 2016 (because I had been referred by my GP for “tinnitus” rather than pulsatile tinnitus) and he confirmed what I had googled back in April 2016. At that point, I decided I needed to be honest with my wife that the “hearing appointment” I’d had at the hospital was somewhat more. So I sat her down and told her at least most of it.

I didn’t tell my parents until I was about to go for that first MRI (because again, I wanted to be honest with them, even though I knew they would worry). It seemed a good idea if I was to go into hospital for neurosurgery that I was honest with them before going in. What I hadn’t anticipated was that an “urgent referral” to neurosurgery would take several months and waiting for surgery a further several months. If I’d known the timescale, I wouldn’t have told them until I was actually closer to surgery.

My son was about 13 or 14 and astute. Equally, very capable of using the internet to look things up. So I told him at some point between autumn 2016 and spring 2017 but forbade him to go looking things up! If there was anything he wanted to know about it, to ask me please. I think that worked.

I’m not sure you need to keep a poker face with everyone. You may not want to discuss the really scary stuff with your wife but that is what we are here for. It is very helpful, I think, if you have a friend or colleague who you can talk to about the scary stuff: someone who is ok with being your “OMG!” dump (because you’d do the same for them one day). If I’m honest, I have a mate called Andy who I dumped on a couple of times but mostly I went to pieces at work!! (This is not ideal). My immediate boss was a very approachable guy who I’ve known for at least 10 years and we were starting out in a new company in October 2016 to the extent that he said to me “What job would you like?” (Also meaning “now is the moment to get yourself a bit further up the ladder”) and I was in freefall at about that point so I told him what was going on with me health-wise and that in no uncertain terms was I ready to try to take on responsibilities at work! He got me pretty much in full meltdown. Not ideal.

However, both he and Andy and my wife and the people here were very understanding and helped me through that time.

As always, I hope something here helps.

Best regards,

Richard

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You mentioned this. As others have said, you’ll likely have a massive headache. A stiff neck is also a sign, as is confusion or the inability to get your words out: it entirely depends on where your bleed is.

Honestly, I think it is good policy to talk to those you live with and work with about stroke and get them up to speed with the signs and symptoms; if you have a stroke, it is time to dial for an emergency ambulance or otherwise go straight to the ER. This is the campaign used in the UK: “F.A.S.T.”

(999 is the emergency number in the UK)

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Thanks again Richard, I do appreciate your story. I have talked with my wife about it and we are planning together. I hope next week I can have more information on dates for appointments. In the meantime, all the best to everyone in this group!

Francisco

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I TOTALLY agree. It can be very easy to draw parallels (or what we see as parallels) from our own symptoms and what we read, when often those symptoms have very little parallels at all. I say this because I did exactly the same thing, going down the worst case scenarios track. And all it really did was stress the bejeezus out of me (and everyone else around me) even more.

I’ve often made the comparison:-The human brain is our body’s computer system. If you opened your computer box and threw in a handful of aluminium foil flakes you’d have short circuits all over the place, you couldn’t really say which processes would be affected nor to their impact. It can be similar for a bleed, both size and location can play a huge role with regard to impact. Trying to gauge the impact is near on impossible.

This is a time to be kind to self. I could tell you ‘Don’t stress’ but if you’re anything like me, I was an absolute mess. Others were telling me don’t stress but my view was 'I have a timebomb in my head and you’re telling me don’t STRESS??? Too late" And most of the people saying ‘Don’t stress’ have never been in this situation anyway, so how would they know? Personally, I had to hand all control over to the medicos and for a control freak like me, that was not easy, but the reality was I had no control over any of it.

Merl from the Modsupport Team

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Dear Merl,

I am definitely a control freak in these aspects of life. I hope that as time goes by I just get
used to knowing all the time that I have this. It is a very surreal feeling, like a dream. So, on with it, we have to, we must.

Best

Francisco

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Dear Richard

I have a question, relating work. I love my work (Real Estate) and I have several teams that work around me, in some aspects depend on me. Did you make changes in your daily activities? Some times I feel I should, but sometimes that I shouldn’t. I don’t want to live under a rock.

Best

Francisco

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Not really.

My DAVF was making me dizzy – perhaps because high pressure blood was pumping past my ears or otherwise impacting something – so I wasn’t allowed to drive and when I discussed my situation at work, my bosses asked me if I would prefer to work from home. Indeed, I think to some extent they were keen for me to be at home in case I fell down the stairs or something, and all of the paperwork and risk liability of me being around work, but I was very clear that I much preferred to be at work while I felt I was at risk. By being at work, there would be other people around me for eight hours of the day that if I were to work from home wouldn’t be there. I was safer at work than I would be alone at home. So I was very clear that it was better for me to be there (even on those days that I needed to be in a different office and it took 2 hours on the bus to get there!)

That was my main approach to work.

I also took the opportunity to educate those around me, much as I’ve suggested to you, that I had a risk of stroke and to dial emergency if they found me confused or inspecting the carpet at close range.

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I will try and answer a couple questions. I have a small AVM and had Radiation aka Gamma Knife - no bleeding. I just went back and asked my doctors 6 months in with no side effects some of the same questions. I also am a workout queen lol.

When I asked should I be concerned about getting my heart rate up too high ? His answer was no. Can I go back to bike riding, his answer yes. He did tell me contact sports. Volleyball, soccer anything where you may get hit in the head.

Can I still have a couple of drinks. They ask you in the beginning what your drinking pattern is. I consume 1-2 drinks on the weekend. He said that’s fine. I would caution you about drinking too much.

With all of this said always check with your doctor. My life this far has been pretty normal except for the emotional toll it has taken on me post diagnosis. I have worked through it with the support of my husband, adult son and mom and a little therapy.

Be well.

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Thank you for reaching out Patrice. Good points and advice they gave you.

Best

Francisco

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And you will, it just takes time and no one can tell you how much time. Even years later I still have good days, bad days and those days you wouldn’t wish on your worst enemy. Initially, it was like every ache, every pain and I’m questioning myself. Over time we learn how best to manage for ourselves. I have had all sorts of medical opinions but in the end I have to manage it the best way I can, for me.

I’m still aware of my situation and my symptoms give me daily reminders but I try not to let it rule my thoughts too much, because it really can weigh you down if you let it.

Merl from the Modsupport Team

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I would just say in my experience the only thing that help was removing the AVM with craniotomy

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My son just had very similar removed last December. Dr Mark Bain. Amazing experience. My son is just going back for his 6 month cerebral angiogram. But at the time it showed that they got it all. No complications. Excellent care. Can highly recommend the Cleveland clinic.

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