Round 4 in the books

Types of Avm's Brain DAVF
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Hi all. I’m back. Papilledema in my right eye remains. And, recently disappointingly was hit with a 12 consecutive day low grade untreatable Migraine behind my left eye. This led to moving ahead with Round 4. Was kinda in a bit of a holding pattern following the 1st 3 rounds due to radiation exposure of those procedures.

Had the embolization yesterday at 10am. Arrived home not too long ago following the overnight stay. Recovery so far going excellent. Began work on the left side. The targeted posterior Occipital area was successful. Can’t say after a sleepless night I was all together for meeting with Dr. this morning. Wouldn’t say the news seemed stellar. Fistula already growing some on right side following all the work that could be done on that side in the first 3 procedures. The untouched left side as he put it was also more prominent. Thought maybe my left ear whooshing may have left but when I got home to quiet place…well…its still there. Boo! Have my follow up in 2 weeks so I will be more clear headed to ask some pointed questions to determine what the future may look like. I know for sure I am staring at another procedure to continue left side work in 6-8 weeks. And, likely another after that just like the right.

I just want to try to get a firm handle on what the long term looks like for which is now a Grade IIb (was Grade IIa+b) incurable fistula. Not sure if its an ongoing glue maintenance program since it cant be shut down & obviously will always seek blood as he says. If so, what is the rate of growth and can I win the race and well…how long is before the fistula outruns the treatment? Hope all is well with those out there fighting the good fight!

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Certainly an ongoing battle. I imagine the wait for follow up in a couple weeks will be stressful. I like to hear the pointed questions part! I’m an advocate if writing them down, always hate to leave any medical appointment and think of something I should have asked. Take Care, John

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Hi Uken, It seems like you’re struggling with a lot, emotional and physical.
There’s lots of people here that understand your medical issues so don’t be shy about asking again if you couldn’t understand a response.
As far as, “can I win the race”, We all have one ending.
As far as defining “winning” and “race”-- that’s up to you.
You will have to work on that definition for yourself. I do know you can transform it in a positive direction.
Lots of people have defined the “race” as the rat race-- he who accumulates the most toys/money/success wins. Some come to the realization they were wrong when they get hit by something rough. Best wishes, Greg

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Darn! Like you say, looks like no way to avoid round 4.

My DAVF was never classified but I was definitely getting plenty of reflux, so I felt very much in the same position as you, e.g. somewhere around IIa+b or IIb. By contrast, mine looked very discrete on MRI, looking like a very direct shunt into my right transverse sinus. The consequence of that very direct quite discrete shunt, I had blood going in all sorts of directions.

It felt to me as though it was developing quite quickly, so Sep 2015 I had the faintest pulsatile tinnitus. July 2016, I managed to record the bruit by pressing the microphone of my mobile phone to the site on the back of my head. By the autumn, I was getting dizzy. Through the winter and early spring, I was getting much more dizzy – lying in bed at night almost made the room spin round and the pulsatile tinnitus was like having the washing machine on pump-out every second. Gorgeous!

The MRI was taken in Sep 2016; I don’t know how extensive it was by my embolisation in April 2017 but I assume it was less discrete. The doc said he “used lots of glue!” including filling some emissary veins on the outside of my head (I believe).

So I feel you and I hope it may be helpful to lay out what I can about my development.

Can you outrun the thing? Who knows, tbh. I do tend to think of part-embolisations as being liable to make the situation worse rather than better. There’s a bunch of pressure on the arterial side trying to reach anywhere, including running the short-cut through your DAVF/AVM. Why closing off part of it would reduce the pressure in the remaining areas, I don’t understand. Having reduced the escape routes, it feels to me as though the pressure on the remaining venous connections could increase. So in my mind, it makes sense to crack on with closing it all off.

You rather indicate that it’s never going to get fully shut down. Do how do you win that race? Honestly, who knows? It’s going to depend on what’s left to continue to make itself known.

Do you have a lifetime of embolisations in front of you? Quite possibly. Will they do some good? Take the views of the doctor each time. We did have a fantastic member here who passed away, not due to his AVM, last August. Tom was 57 and had recently had his 18th or 19th embolisation/surgery, having had his first in about 1978 (I think). His AVM was in his neck but made its way north into his head over those ~35 years. I don’t think his AVM was “small” at all and being in his neck, chest, shoulder was constantly being flexed. He was a wonderful man and I wholly value having shared the last 6 years of his life through this forum. Even while he was rather poorly in the latter of those years, he was a light to many of us here. Tom would highly recommend Dr Giuseppe Lanzino at Mayo Minnesota. They definitely worked constructively together on trying to best manage Tom’s AVM over a long time.

These are more than enough thoughts for me to share for the moment! Hope something might help.

Very best wishes,

Richard

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Thanks all for taking the time to share your thoughts and concerns. It really does help. There is just something different about sharing your story & getting feedback from those who can relate to the condition.

This thing is an absolute monster. In fact, Dr. Grossman tagged it as such. If I could share pics I would show you the massive amounts of glue. I guess at this point still a minimum of 2 more to get this thing down to where as Grossman puts it…it becomes risk v. reward. I take it some areas are just extremely risky or inaccessible. I have not really deep dove that issue yet. As I am just taking a procedure at a time to get it as close to occlusion as possible with risk consideration by Grossman.

Dick D., very good points and I am aligned with you. As a mechanical engineer I overanalyze this stuff to death. Between my daughters spinal fistula and my own now I know way to much about the vascular system. I have only recently stopped caring so much about the technical details as it can become exhausting and it really has not gotten me anywhere. The Drs. will always know far more than I no matter how hard I study. I’ve realized it is quite pointless other than for my own sanity. I am very familiar with Lanzino. I went so far as sending all of my info. to him in the very beginning. I even have a Mayo Clinic patient #. Grossman knows Lanzino well and in the end based on the # of procedures to follow I chose to stay in Cincinnati with Grossman. He has been exceptional to this point. In 2006 my departed daughter Paige had a spinal angiogram at John Hopkins and suffered a spinal stroke. At the time we chose to go to Hopkins for the angiogram over Cincinnati Childrens. She survived the stroke & later died of liver failure in 2010. It was very hard on everyone in our family as we supported her recovery in Baltimore. That was another factor in staying local.

Well, just wanted to let you guys know I appreciate you. And, dont take for granted your words. Steve A.

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