All the AVM symptoms but no diagnosis yet

I had a DAVF diagnosed in 2011, first saw neurologist, he arranged MRI and then I had an Angiogram to confirm diagnosis, was down for embolization , but refused at the time as I had a lot going on In my life. I just see the _interventional_radiologist every 12 months or so at Walton Centre in Liverpool. He doesn’t seem to keen to intervene at the moment, I also have a small aneurysm found during Angiogram.
The thing is I have all those symptoms you describe and a few more so I understand what you are feeling, its awful, I also have some very odd symptoms like visual hallucinations, usually at night and I told him that but he didn’t seem to concerned, I could go on. The thing is he does seem reluctant to intervene, where as the Neuro/Radiologist at Belfast where I first was diagnosed seemed more than keen to do it, I suppose different medical proffesionals have different views.

Hi all,
just reading about your symptoms which I’m sorry to hear. I have an avm on my right side of brain behind my ear. I get a numb right ear a lot and a constant feeling that my ear is blocked. When finally seeing the ear specialist he said I was imagining it as all the general tests were fine. Does anyone else have their ear fullness on the same side as their Avm or on the other side! Thanks. And all the best to you all. Gill

Gill, Donna,

Well, I had my angiogram today with a bit of vasovagal syncope thrown in just to put the wind up the consultant interventional radiologist (which worked a treat). I’ve got a bit of fullness of my left ear and maybe a bit on my right, bit of dizziness, head pressure and the initial response to my angiogram today was “nothing obvious”. The consultant said he would look at the images again later this week and go through with a fine-toothed comb, so to speak, to see if he could see a cause. So I have to wait a little, probably a couple of weeks or so for his letter.

Meanwhile, the good news has to be “nothing obvious” = “nothing significant”, surely, so I think I can carry on life without worrying too much. He did say he would review the outcomes with the wider neuro team next week, so maybe if a bit of ENT work is required, that might come out of that meeting.

Another clue perhaps that I am better than I was last year is my head feels quite headachy tonight, due to the contrast material. I think last year when I had my embolisation my head felt poorly enough to blame on the glue but when I had a check up angio in May, maybe my head was still getting a bit better that I don’t remember it feeling as rough as today! So my normal state must be better than this time last year.

Very best wishes

Richard

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That’s great news Richard.

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Hi Donna. Welcome to the site and I’m glad you found us. Reading your symptoms felt to me like reading a list of my own. I have a large AVM of the Cerebellum. At 14 I was taken into hospital with a case of Hydrocephalus that was about to haemorrhage. Turned out an AVM was blocking the escape route for CSF. I had been complaining of severe headaches and vomiting for 2 years prior to this but it was a real job to get any doctor to take it seriously. They just said I had migraines!

I had another MRI and MRA today that didn’t show anything new or different from the MRI that was done last October. (Which is a good thing).
Doctor said the malformation in the cerebellum that showed up in the first MRI was a chance finding. It hasn’t changed and they’re saying it’s not clinically significant. They don’t see any tumors or aneurysms and they have ruled out MS. I’ve been through 2 rounds of ENG&VNG vestibular testing which showed the same thing; that it’s central vertigo and there’s nothing wrong with the ear, inner ear or vestibular system.
The doctor is recommending vestibular therapy for 4-6 months. He said the therapy will make it worse before it gets better but if after 6 months the therapy doesn’t seem to be working then they’ll try some medicine that will suppress the balance. (Not exactly sure what that means but it’s definitely the last resort). The doctor never mentioned the MRA results so I’m guessing there were no issues noted.

I told the doctor that I’ve been feeling worse lately, especially the last 3 days. He said there just doesn’t seem to be anything physically wrong and that the therapy will retrain the balance system.
I asked the doctor if I should follow up with a neurologist and he said there really would be no point since there isn’t anything physically wrong. (Getting into a neurologist in my area is extremely difficult).
I’m having a hard time believing that I wake up one day and have such severe vertigo that won’t go away or get better. I made that comment to the doctor and he said “but it happens”.
I asked my primary care physician (different doctor than the one I saw today) to send a referral to Barrows in Phoenix, Arizona, which he did a month ago. I followed up with Barrows last week and they indicated they didn’t have a referral for me. (??) My primary care physician faxed it again last Friday so hopefully it gets into the correct channel this time. (I’m in Washington State so Arizona would be quite a journey, but I’m more than willing to travel to talk to a doctor that would be able to help me).
It seems to be getting worse. I have mild vertigo all the time and severe vertigo 4-6 days a week (can’t hardly walk across the room.). There doesn’t seem to be triggers, it’s just there all the time (like a bad roommate that won’t leave!)
To date, I still don’t have a diagnosis; just woke up one day 8 months ago and had
severe vertigo. No injury or illness, just a spinning head.
I also have tinnitus (left ear), pulsating tinnitus (left ear) roaring in ear (left), ear fullness (left), dizziness (all the time), vertigo, confusion, fatigue, left temporal tenderness, and headaches that come and go that range in severity. In the last week I’ve been having severe ear aches (left ear). Doctor looked at my left ear today and didn’t see any signs of infection (so I’m not sure what’s causing the ear ache but it’s painful and persistent!)

I’ll give the vestibular rehab a try. I have nothing to lose at this point. I still have a feeling it’s something more. Something that isn’t showing up in the tests or something that’s been overlooked.
I’m very frustrated!!

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Donna,

I recognise all of your symptoms but I have to say I’m not affected to the extent that you are. It is really interesting to hear the considerations your doctors have had as I expect these things are relevant to me, too. So thank you for setting them out in such detail.

For me, I went for an MRI of my middle ear yesterday and was then refused by the radiographer due to having had an embolization. I’ve never been told that anything other than glue was used but they were convinced coils or clips would have been used and they need to know what sort before they would dare MRI me. So, I have to wait for a report from the hospital that did my embolization before they’ll do the scan :frowning: However, they are at least looking after me and doing the right thing.

Good luck with the vestibular retraining. I really hope it makes a step change for you. I’m completely interested!

Very best wishes

Richard

Hi Donna. Thanks for posting your update. I can’t believe the doctor you saw said ‘there isn’t anything physically wrong’ with you. There is. You have an AVM in your cerebellum!! Even a small AVM can cause issues. Although I’m not a medical person I think your symptoms are likely to be directly caused by it. The cerebellum is responsible for balance and my own cerebellar AVM also gives me issues with balance and dizziness. Although perhaps not as bad as yours, I was recently accused of being drunk by a member of the public because she witnessed my inability to walk in a straight line! I also suffer from the whooshing noise you describe (a ‘bruit’) although for me its in my right ear, the same side as my AVM. I think you’re doing the right thing pursuing this and hope you get some answers/help soon.

Lulu x

I do agree. I did wonder whether your doctor looks upon the cerebellum malformation as something he or she wouldn’t touch / doesn’t consider the benefit of doing something to that outweighing the likely benefit. Thus, even if they think that might be driving some of the characteristics, it wouldn’t be the therapy to try first. Having a go at the vestibular therapy may well be the best, lowest impact option if it delivers an improvement. Equally, suppressing the issues medicinally may be better than fiddling around with the cerebellum.

So I agree with Lulu, the culprit really looks like the small cerebellum anomaly but its a difficult place to operate on and not do more damage.

Let us know how you get on with the vestibular therapy.

Best wishes,

Richard

Thanks Richard. Yes I would be interested in the vestibular therapy outcomes too. I have never heard of this before.

Lulu

Thank you both for the replies. It’s comforting to read your words of support.
I really need to get myself into a more positive mindset. I really am very thankful that nothing major has stood out in any of my tests. At the same time, I feel very pessimistic when I hear from my doctors “there’s nothing physically wrong with you” or “there’s nothing neurologically wrong with you”. There has to be something either physically or neurologically wrong with me or I wouldn’t feel like I do. I have seen so many doctors in the last 8 months and none of them can tell me what the problem is. I do find myself second guessing my symptoms thinking “am I really feeling dizzy or do I just think I’m feeling dizzy?” When I can’t walk across the room or my head has that heavy, foggy feeling…I’m definitely feeling that way.
It would be comforting to go to a doctor that didn’t just look at me a say “huh? …”
I know what I have is unique and I know there’s a doctor out there who knows what this is and I need to keep searching until I find that doctor. Until then, I need to find my optimistic side and take things in stride and focus on the things I can do and not the things I can’t.

Donna

I feel the same. The only thing is that my symptoms are much lighter than you describe. I only occasionally put a foot out to steady myself, not struggle to walk 4-6 days of the week! I think you’re brilliant just struggling on. As you say, it makes sense that there must be something driving it, which we would all think should be visible.

Lets stick together and see what works for you and what I find out about me.

Richard

Yes! Let’s definitely stick together and compare notes. Thank you for your support!
Just to clarify, I don’t want something wrong with me and I certainly don’t want to undergo any type of brain surgery procedure and I’ll do whatever I can to avoid that. I went from being a very active, busy person to overnight (literally) hardly being able to leave the house and now rarely by myself.
I do have something wrong with me and I want to fix it so I can get back to my normal life. I’m now realizing that I need to find a new normal. Which is hard to do if you don’t know what problem needs to be overcome so I can find a version of normal.
I am a very God loving person and I do believe there is a reason for everything. I know we don’t always know the plan but an occasional glimpse at the blueprint would be nice.
I can imagine God looking at my life 8 months ago and saying “oh girl…you need to slow down” and Shazam! I wake up dizzy and have to force myself to slow down and rely on others; as a wife and a mother that was a foreign concept (I’m used to being the mother and not being mothered). My family has been great and have never complained about picking up the slack.
I have found that I have an artistic side to me that I never knew existed. I started taking some on-line painting classes and I realized I’m pretty darn good. I’ve made some really beautiful pieces!
I do realize things could be worse…Much MUCH worse and I really am thankful that it isn’t. I just need to get over my pity party and keep putting one foot in front of the other and be ok with my steps not making a straight line. :blush:

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Well, out of adversity come some great things!

I’m having an interesting time. I have had my symptoms since my embolisation. Initially my view was “this cannot be what fixed feels like” but the doc was adamant that all looked ok and I should expect it to take some time to get used to the new pressures in my head. As I stand today, I have to say I’m better than I was pre op or for that matter post op. In October just gone I felt that rather than getting better month by month, I had slipped back. Then in Nov I had a pretty dizzy week and felt unsafe to drive. So I went back to the doc and the appointments I’ve had in March were as a result of going back in Nov.

I’ve had a week or two by now of still having my symptoms but for some reason feeling more positive about it all. The angiogram on 27th showed nothing significant and I had a confirming letter from the interventional radiologist that there was nothing to see, so take heart from that. Maybe I have done so, which is good. But I’m completely with you that you don’t get symptoms without a cause, so there must be something driving it.

I have to say I suspect a little something going on with either pressures playing upon some part of the balance mechanism in my ears or it being cerebellum related. I learnt the other day that there is a vein called the straight sinus that drains from the cerebellum and Vein of Galen area into the transverse sinus, then sigmoid sinus, past the ears and so on. My DAVF was in the area of my right transverse sinus so I’m wondering if there is some consequential connection or impact from mucking about with that upon the other veins or arteries thereabouts.

Rather than you not wanting to undergo more surgery, I have been keen, if there was something not too intrusive to do that I’d happily do it. The idea of a craniotomy for no big reason would not be right but a bit more glue in some necessary place would be fine by me. I’ve got through that fine once. I could do it again.

Reading your position and that of @TJ127 has been interesting as I feel I share much less onerous symptoms with you guys but am keen to share with you and see how our pooled experience with the doctors might inform each other.

So… Keep up your positivity as best you can, I’ll try to mention anything that happens to me and let’s see if there’s anything we can learn between us.

Very best wishes

Richard

Get yourself to a high volume center or hospital that specializes in these things. There are many on the east coast, but I’m not sure what’s on the west coast. I’ve heard UCSF is very good and they aren’t terribly far from you.

How do you find one? And the million dollar question, how do you get into one? My doctor wrote me a referral to Barrows in Phoenix but I’m having problems getting them to accept me as a patient. I think not having a solid diagnosis is part of the problem. There’s a lot of doctor chart notes that say the patient is complaining of dizziness but there’s no tests that point to a cause.

I guess that partially depends on your insurance. You’ll likely need a cerebral angiogram at some point for definite diagnosis. But don’t just have anyone do this. It’s invasive, and the doctor needs to know what they are doing, plus their skill level affects how well the angiogram is performed. After that, you can send those images to doctors in Phoenix or otherwise. In your area, University of Washington Medical Center seems to be rated well for neurosurgery. MRI or MRA doesn’t provide a clear enough picture of what’s happening, often times.

I have good insurance and I’m double covered And my insurance doesn’t require preapproval for referrals so I think I’m good there. University of Washington Medical Center is where I was yesterday and had my MRI & MRA. I saw an Otolaryngologist there who told me there wasn’t anything physically wrong with me and when I asked him if I should follow up with a neurologist he told me there would be no point since there’s nothing physically wrong with me. In order to get to a neurologist (and the right neurologist is important) I have to have a doctor’s referral. That’s why I had my primary care physician refer me to Barrows. It’s the only place I knew of that specialized in AVM’s. At this point, I don’t even know if the vascular formation in the cerebellum is the problem but the symptoms seem to be consistent with my ongoing problems.

The most important thing I can say to you is DO NOT GIVE UP. You know what’s wrong with you, the doctors are not in your body feeling what you’re feeling. Many times it can look like nothing is physical wrong with you when something is actually brewing. As an example that is not related to AVM but is related to being asymptomatic, I have actually been sick and gotten into the clinical prior to the “rails” needed to be heard to diagnois bronchintis have developed (the way your lungs sound). But they know me there and put me in an exam room to keep checking me periodically. About a hour later they started hearing the “rails” they needed to hear. We all knew it was coming, I just got there before it had fully developed. Which is proof that we know our bodies, after all, we live in them.

Do not let a doctor decline to give you a referral – I can tell you the majority of American insurances do not require referrals, the specialist may still require one from you to make an appointment. Always remember YOU are paying a doctor for a service. That service may very well be a referral to a different doctor of your choice.

Good luck! Keep us posted!

azurelle

Hi Richard!
You had a fistula, is that correct? How was it diagnosed? Is that something that could hide from an MRI or MRA?