A lot of Docotors with diffrent opinions. Whats next?

Symptoms & Treatment
1

Hey Guys,
I am happy that I found a community that understands these issues.

My AVM was found by accident in 2018 when I was 26 years old. I had no symptoms ever since. The doctors told me embolization (this was at Alfried Krupp in Essen Germany) is possible but since I didn’t have symptoms, it could just be monitored.

Its sits in the left frontal lobe, was described as non-eloquent, drains via a cortical vein. It is about 4x2 cm in Size and described as grade 2. The next MRT checkup was in 2024. Since then, I had no issues. Sometimes when I had headaches I worried a bit, but overall live was great. The next checkup in 2024 revealed that the veine got bigger, and also it looked like an aneurysm was forming on the veine. I still had no symptoms, but their opinion was, pro treatment, and also it would be kind of easy for them to do it. I left but didn’t receive a report for a long time. Furthermore, I went to two different clinics in Germany. The first one overall said, it’s up to me, but there is no need to treat it. I visited a third one, because at the time it was YES vs. NO. There I did one more MRT and an Angio. It revealed no aneurysms, but they were not so sure about if the AVM ever did bleed. I heard that for the first time, the other hospitals told “no signs of bleeding”. By that time I got the report from the Checkup 2024. Now their opinion is more like: Treatment only if an aneurysm is there. The widening of the veine is not enough to justify treatment.

So I have an AVM that hasn’t changed over 7 Years. The veine got bigger, but that’s it. Two hospitals are on the monitoring side (once per year) one Hospital (where I did angio) says both decisions are probably correct, but they are more on the treatment side. They suggest one embolization and brain surgery to fully remove the AVM. Also instead of brain surgery cyber knife would be possible. They recommend treatment, because for them, it’s not possible to tell if it ever did bleed, and It’s easy to treat in general.
Well for me, it was 2 (Monitoring) vs.1 (Treatment) and monitoring was my decision.

Now It’s today, one year of questioning my decisions, constantly scanning for headaches, being super sensitives when it comes to head pain. I really can’t tell if it got worse, or I am just amplifying every feeling I have. I just had my yearly MRT (2026) and everything looks the same, except for the veine. It got a bit bigger. The doctor told me it was too expected. Especially for my age (34), some dynamics can happen. He told me, that the overall status hasn’t changed, I could still monitor it or treat it.

Now everything comes up again, I am worrying for 2 days constantly, feeling my head and amplifying everything that I feel.

I have many options, but I don’t know what to do. I never had any neurological deficits and if I wouldn’t know about the AVM I would have never guessed it based on headaches that one sometimes have. I am so afraid that treatment gives me more headaches or worse. I am afraid of losing the ability to work and to ride my bicycle.

I am thinking a lot about going back to Dr. Chapot, although he changed his opinion and I waited so long for a report, because he seems to be the only one, who is capable of treading it only with embolization. I am expecting more symptoms from radiation and brain surgery. They are treading it by going throw the veine, what most Hospitals won’t do.

What are your opinions on these different treatment methods when basically every option is possible? How do you cope with being on alert at all times? This is really ruing my days for a long time.

2

Hi @Zies! Welcome to AVM Survivors!

This is the challenge!! It really is!

I don’t think you should look upon embolization as trivial compared to the other routes: it seems pretty straightforward but it still takes a long time to get back from in my opinion. So perhaps choose the route you’re most comfortable with, the set of doctors you’re most comfortable with. The only person you need to have the conversation with (unless you’re married) is yourself. You need to be most comfortable about the route forwards, whatever that is.

My situation was different: very very tiny spot visible on an MRI but a high flow dural arteriovenous fistula in my right occiput. It was giving me dizziness and actually I could hear the turbulent blood flow from it, as it passed both of my ears. So I didn’t need convincing that something needed doing.

I was only given one option on the UK national health service, which was an embolization. It was done 9 years ago this week and it took me 1½-2 years to be comfortable that I was all fixed. It only needed one attempt but my own neuroses and self-amplification in a similar way to you meant that each strange symptom, noise, dizziness led me to worry that it still needed more attention. I’ve been living a normal life for the past 7 years.

And monitoring is as much a way forwards as any. You have four roads ahead.

Very best wishes,

Richard

3

That’s it. It feels like I need something to convince me more to go for treatment. I also have a pulsating sound, when my head is the lowest position or sometimes in bed when falling asleep. Most doctors said it shouldn’t be possible to hear this kind of AVM. Well another thing that bothers me now haha.

Thanks for your opinion on embolization. For me it sounded like the easiest thing. I’ll probably favor one arterial embolization plus radiation. 3 years is nothing compared to the 8 years now. Damn I wish to not know about this thing…

4

Has anyone listened to it through a stethoscope? I had an “auscultatable bruit” directly over where it was, although mine was discharging into my right transverse sinus which is one of the dural venous sinuses, so very near the surface: maybe that makes it easier to hear via stethoscope.

I went to the doc because of the noise but it took me a while to decide it was necessary to go. I first heard it in Oct 2015. By Jan 2016 it was louder and I did a bunch of googling to see if there was anything to worry about. I didn’t find anything other than tinnitus, which seemed a pointless detour, so I ignored it. In March or April 2016, I was again perturbed enough by the noise, which was definitely louder again, and I found a page about AVMs, DAVFs, pulsatile tinnitus (as distinct from tinnitus), bruit and stroke and had a bit of an OMG moment. So I went to the GP.

I described my symptoms to her rather than saying, “I’ve got one of these!!” and she clearly assumed tinnitus rather than pulsatile tinnitus and referred me to ENT. I saw the ENT guy in late August 2016 and he had me do every hearing test under the sun. Finally I had my consult with him and he said, “So, Mr D, how long have you had tinnitus for?” and I said, “Oh, I’ve had tinnitus for decades! I don’t care about the tinnitus: it is the pulsatile tinnitus I’m bothered about!” (useful to know the terminology!)
“Pulsatile tinnitus?” and he opened a drawer, which was empty.

He went to find a stethoscope and came back. He plotted all over my head with the stethoscope, settling on my right transverse sinus and he just stood there listening for quite some time. (“Well, I reckon he’s found something” I thought to myself).

He rang a colleague, who didn’t answer and then turned to me, “Mr D. You’re my last patient of the day but my most interesting patient of the day.”
“I’m not sure I want to be your most interesting patient of the day.”
His phone rang and his colleague (perhaps in neurology) had left for the day. They would catch up with each other [over golf?] on Tuesday.
“You have what we call an arteriovenous malformation,” he said, and the bottom dropped out of my world. He had confirmed Dr Google’s finding of that page on the American Stroke Association website. I’d have to be honest with my wife that my “hearing test” was something a bit more serious, when I got home. I found this website a month later as I was waiting for my first MRI.

The pulsatile tinnitus got louder over the ensuing months as I waited for the MRI, the results, a referral to neurosurgery and then finally the front of the queue for an embolization. I had the embolization on 3 Apr 2017.

Don’t go off embolization: for me, it was the one I could face and it was subsequently what I was offered. If I had needed to go through it again, I’d have done so happier about it than initially but it re-plumbs your brain just as instantly as open surgery and therefore it takes a while to get used to that re-plumbing.

By the time I got to February or March 2017, the pulsatile tinnitus was like having the washing machine on pump-out inside my head 24 hours a day. Sleeping propped up on pillows reduced the pressure a little but it was making me dizzy. I was concerned that it was changing so rapidly that I might not make it to 3 April 2017 or that an embolization wouldn’t fix it by that stage. However, it did. It took longer than I expected to feel “normal” but having hung around here for the past 9½ years, recovery from brain surgery – whether craniotomy or embolization – takes a lot longer than people will tell you. So don’t be perturbed about that. It’s just how it is. And there are literally thousands of us on this site who have been through this, so you’re not alone.

Best wishes,

Richard

5

No one checked my head for the pulsating sound. But three different neuroradiologists didn’t seem to care so much. I think I have that sound since forever. Also its not constant and not really annoying.

What do you mean by it repluming? How did that feel? Do you think you ever came back to status quo? How long was your recovery, for how long have you not been able to work?

Thx

6

Using a stethoscope to detect an AVM seems to be unusual but for an ENT, it is probably the immediate tool that he has to hand, especially at the end of the day when he wants to go home on time.

“Plumbing” is the English term for the water pipes in your house, so by re-plumbing I mean the closing off of the short circuit that my AVM/DAVF was creating.

An AVM is an erroneous connection between an artery and a vein: the only connections should be billions of capillary beds, which I assume slow the blood flow down considerably. With an AVM, the atrial pressure blood squirts into a vein or veins. The issue is that veins aren’t built for arterial pressure blood and bag-out and then may rupture, leading to a haemorrhagic stroke (if it is in your head).

While we have an AVM or fistula diverting some blood back round the circuit, I assume that we have lower pressure being achieved in the extremity of the affected artery and higher pressure in the vein. As soon as you have an operation to close the AVM, the pressures go back to “normal” in each of the affected places. However, most likely, we’ve had the AVM for decades, so that sudden change is just weird. So I felt very unusual to start with. In fact, I still felt unusual for a year or so post op. It was only consulting with the neuro further that persuaded me that I needed to stop listening to the noises in my head and get on with normal life. I’d say I felt “normal” after about 2 years.

I only had three weeks off work. I was granted two by the hospital but I took a further week of my own holiday. It’s a gradual process after that. I can link you to my notes of the day for any more detail.

I stopped driving in about Sep or Oct 2016 as I was going through waiting. Once i got through the operation, the dog said I needed to stop driving until he had done a review scan at about 8 weeks post op. Then he gave me paperwork to start the process of being able to apply to drive again. I stopped driving because of the dizziness that my AVM/DAVF was inducing. You may need to stop driving anyway, depending on the rules of the relevant driving authority where you live but mine was very swiftly restored post op: I was very impressed with the speed.

7

Thx for the reply, I actually wanted to know, how did that replumbing process felt. From a neurological view. Or was it more like a psychological thing?

8

I was just surprised not to feel immediately “better”.

I had dizziness and a pulsatile tinnitus (a whoosh, whoosh in my ears once a second) before the operation. After the operation, I had a decent headache (lots of irritated brain) dizziness and a very loud but healthy sounding pulse in my ear, not very different from the noisy pulsatile tinnitus. So my initial reaction was disappointment, really! I had hoped for silence and a head that felt “normal”.

As the months went by, it got a bit better but I had a couple of days (I think) of more severe dizziness again several months post op and worried that that was a sign that all was not fixed but the top and bottom of it was that I was being impatient. I had further scans and the doc basically said, “can’t see anything physiologically wrong: you must just need to acclimatize to the new pressures in different places”: the correct pressures but you need to get used to them.

So I resolved to accept that as true and ignore any minor weirdnesses. Basically, about 2 years post op I decided that that had been the right plan. Just stop listening for “faults” and get on with normal life.

So I think it just takes time. It’s not like breaking a leg and having to walk round in plaster for a few weeks. No. It takes longer and it’s rather non-linear but there’s every reason to think you’ll get out the other side.

9

Ok, again, thank you. This makes so much sense. The thing is, I don’t have any issues or symptoms (at least nothing that one could 100% relate to the AVM). And I am afraid to have symptoms after the treatment. This also proofs, that every AVM is different and decisions are hard.

10

It’s impossible to say what symptoms you’d have or not have post op. As far as the neurosurgeons are concerned, surgery/embolization etc are focused upon reducing your stroke risk back towards that of someone your age.

Good luck making your choice: I think all of us who’ve had to elect to go forwards with surgery of one kind or another have found the choice of do nothing/ do X / do Y very very difficult. In my case, i had such developing symptoms that I felt clear that i had to choose to operate but choosing to watch and wait is sometimes the right thing to do. Very very difficult.

Very best wishes,

Richard