I’ve been struggling with a sudden onset of dizziness that started 7 months ago; I’m 51 years old and I haven’t had any illness or injury. I have the sensation that I’m moving all the time. When I’m standing and leaning against something it feels like I’m moving backwards. When I’m driving and stopped at a stop light, it feels like I’m still moving (I voluntarily grounded myself from driving.) I’ve been to many doctors and specialists (and a few that I wouldn’t ever go to again or take a sick animal to!) and still don’t have a diagnosis. I had an MRI 5 months ago and the only thing noted was a small vascular malformation in right cerebellum. All the doctors I’ve been to have dismissed it saying it’s nothing to worry about because it was small. I actually had a neurologist tell me “maybe you’re just a slow bleeder” And then he mocked my condition and said there was nothing neurologically wrong with me. Needless to say, he’s one of the doctors I would never go back to.
After going through the second round of balance tests (VNG) it was determined there’s nothing wrong with the ear or inner ear (both tests I did had the same conclusion). The specialist said that all my symptoms (pulsating tinnitus, roaring in ear,ear fullness, dizziness (all the time), vertigo (3-4 days a week), confusion, fatigue, left temporal tenderness, and headaches that come and go that range in severity) point towards something wrong with the cerebellum and he wants to take a closer look at the vascular malformation. I’m scheduled for another MRI in a month. It takes a long time to get into a good/ reputable neurologist in my area; in most cases it’s a 6-8 month wait. The specialist I’m seeing is an Otolaryngologist (ear doctor) and I travel 200 miles to see him and he’s trying to get me some help. He has connections to neurologists so he’s going to consult with them after the MRI and go from there, knowing it could be several months to get an appointment. It’s frustrating to go from doctor to doctor and nobody has any answers and I can’t get into the specialists I need. This has completely changed my life. I was very active and loved to be active and now I’m afraid to drive and on most days don’t leave my house because I’m so dizzy I can’t hardly walk across the room. I found this site and have found it extremely informative. The more I read about AVM, my symptoms seem to match a lot of the stories I’ve read.
Donna,
Welcome! I’m pleased you found your way here. I have some of your symptoms, too, and I’m struggling to get the doctors to think there is anything wrong. I agree it sounds like something either in your ear or affecting the cerebellum.
Keep at the doctors and I’ll let you know how I get on, too!
Richard
Hi and welcome to our group. All the symptoms you identified, I had “after” my AVM ruptured. Prior to the rupture, I had never heard of an AVM. However, I suffered with migraines for probably 40-plus years and I still don’t know if that was a pre-cursor to the rupture. Don’t give up on doctors. Keep going until you find one that will listen to you and will do the necessary test to determine what’s going on in your head and will advise you of the best course of treatment. It’s great that you found this site. We will always offer support and encouragement. Best of Luck and keep us posted on how your journey is progressing.
Sharon D…
Richard & Sharon Thank Your for the encouraging words and for your support. I’m getting quite an education about my brain and I’ve already learned a lot just from reading on this site. I, too, had migraines for 20+ years and I went through some pressure-point therapy about 10 years ago and got most of it resolved. I hadn’t had a headache I didn’t deserve for quite awhile until this hit. I’m really anxious to get a diagnosis so I can make a plan on how to proceed with life and adjusting to what the new normal is. I have a fabulous family support group. My husband and daughter have been so helpful and supportive and loving. It makes me really really grateful for the small things! I know whatever this turns out to be will be ok because they are at my side 
I completely agree with this bit. So, it will be good to have a closer look to see what is going on. An MRI is a decent way of looking inside but an interventional radiologist will probably then want to look with an angiogram – with the injection of a contrast material-- to see the VM in more detail.
The cerebellum is a tricky place and until recently, I would have said people don’t get AVMs in their cerebellum operated on but I’ve seen several stories in the last few months where a cerebellar or brainstem AVM has been treated. It is more complex and it is more likely that they’ll say “I’m not touching that” but you need the docs to do some scans to see what you’ve got where.
I’ve got pulsatile tinnitus, regular tinnitus, ear fullness and a bit of dizziness maybe. Head pressure as well. I had a rubbish night last night but a couple of paracetamol have made me quite good this morning. My story at the moment.
Very best wishes
Richard
Are all radiologists interventional radiologists or is that a speciality type of radiologist? Is that something that a neurologist would refer me to? I’m still in a long holding pattern waiting for a neurologist.
Special kind.
The neurosurgeon should talk to you about different treatment options but some of those would be undertaken by a (neuro) interventional radiologist. An IR is someone who uses radiological equipment not just to look inside your body but to undertake treatment as well. There are two main types of non-surgical intervention you might be offered:
- stereotactic radiosurgery, a bit like people have for cancer or tumours
- catheter embolisation.
SRS is usually in the form of “gamma knife” surgery (I assume using gamma radiation) or less often, but more appropriate for children is proton therapy. Effectively, this is to zap the AVM from the outside. The idea being to have tiny bits of radiation from different locations, targeted onto the anomaly so that the anomaly gets all the radiation but the surrounding tissue gets very little.
Catheter embolisation is a means whereby a very fine tube is inserted into a major artery, e.g. your femoral artery, and navigated up your body to the affected area. In an “angiogram”, a contrast liquid is then injected to show up the artery and malformation on an x ray screen (or other scanner) and with “catheter embolisation”, the tube is used to inject glue or coils or other particles to block up the anomaly. I had a PHIL glue embolisation last April.
If your neurosurgeon doesn’t talk about these options, it may be you would do well to seek out an IR for their opinion. Some neuros take a very balanced view and some neuros seem to think the only way is to pay them to operate on you using the skills that only they have. In the UK, I had a multidisciplinary meeting with neurosurgeon, IR and maybe others present, by which they agreed the best treatment options. I think this is a common model in the UK but I’m less clear that it is common in the US.
Hope this helps,
Richard
Great info! Thank you for taking the time to give me all those details. Like I said, I’m still in a holding pattern waiting to see a good neurologist and I still don’t have a diagnosis. In the meantime, I’m getting as educated as possible on all the options.
Dear all, I am new to the community, and first wrote in only 10 days ago just as I had been diagnosed. Scared and confused, it was a comfort to know there were others out there.
I have struggled with an undiagnosed AVM for 2.5 years. I am fortunate that there were no ruptures, or other worsening symptoms. The pulsatile tinnitus, pressure headaches, extreme lack of sleep, and other classic symptoms including stiff neck- became unbearable.As an otherwise healthy 57 year old, the thought of living life in such a state was not an option. In spite of numerous consultations with the primary, and ENT, hearing tests, etc., and oh by the way…dismissed as “stress”---- I insisted on diagnostic testing. I had an MRI w/contrast. It is important to ensure that your physician also specifies an MRA at the same time, while it gives you a view of aterial activity. The MRI, may miss AVM- but for a good radiologists notes to suggest MRA as a precaution. Having both at the same time, save time, anxiety, and money.
Needless to say, the MRA showed my AVM. Within a week, I underwent a angio and embolization. I woke up with out the pulsing in my left ear, and the paralyzing neck pain. I am one week tomoro into my healing, but the results are life changing.
LISTEN TO YOUR INTUITION, if it tells you something is going on—then by all means pursue it until you get an answer. Our bodies are machines, if something is out of kilter, it effects other things. DO your research…there are remarkable neurosurgeons that specialize in AVM. It may be “rare” but for some specialists, it is all they do. I am fortunate to be in a city that has wonderful medical institutions and teaching hospitals. BTW, I diagnosed my own AVM in 2016, even reached out to a prominent neurosurgeon (via a Google search who was great enough to respond and suggest I take first steps with an ENT and MRI), but second guessed myself—something like “WOW, this is EXACTLY what I am feeling (symptoms), but that can’t possibly be real”. Take charge NOW. Good news is that even over the short period of 2016 til now, technology has gotten even better. LISTEN TO YOU OWN INNER VOICE, and wishing you renewed health!
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
That’s great news Richard.
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!!
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 
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.