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Old 06-30-2007, 09:29 AM   #1
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Possible AVM, dural fistula?

Just before Christmas 06 I started feeling pressure i the base of my skull near the back. I also started to get a sore/stiff neck. In the next two months it became worse and I started to become extremely fatigued. Ocassionally I would have a headache in the morning, but the pressure was the worst part. I lost the vision in my right eye three times (peripheral) for just a few minutes. I started having swallowing problems. In the last two months I have a constant throbbing behind my left ear and the pain radiates toward the center of the base of my skull. For days at a time the pressure and throbbing will be terrible and I can't concentrate, and things I used to do second nature get all messed up and I don't even realize it. My wife and kids say I am a totally different person, I can't enjoy anything anymore. I also have a high pitched squealing noise in my left ear. I went to the dr. and had ct and MRI, and they found nothing.
HERES THE IMPORTANT PART!!! I picked up my MRI last week and looked at it. There is a large cone shaped thing between my brain and skull right behind my left ear. It looks like a tangle of small blood vessels around a large coiled vessel. It is 30mm long and at the top it is 13mm in diameter. It jumps out at you because the contrast makes it bright. It fills up the entire sinus. How can they not think this is anything? It is exactly where the pulsing pain and pressure are. I went to a nuerosurgeon and he told me the pain was a nerve and all other symptoms were psychological. He didn't get within 5 feet of me and in 4 minutes of talking to me he came to this conclusion. I haven't been sick at all in 4+ years until now. I walked out furious. I made a new appointment with another Dr. but not for three weeks.
Let me know if you have any thoughts. I cannot find any MRI that is normal and shows what mine does, and it looks just like a avm. Help!

 
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Old 06-30-2007, 02:33 PM   #2
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Re: Possible AVM, dural fistula?

Could that area you saw on the MRI be the inner ear? What's it called? The cochlear or something like that? Isn't that coil shaped?

Is all the pain on one side of your head? Do you have symptoms of TMJ?
Clicking of the jaw while chewing? Grinding or clenching of teeth at night?
I have this and it cause me dizziness, one-sided neck and head pain, ear pain, jaw pain, and ringing in my ear also.

Just my impression as I read your post. An AVM would be clear to the neurologist & radiologist, and can be a life-threatening thing. They would have seen that and had you in there pronto.
Faith

 
Old 07-01-2007, 12:51 AM   #3
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Re: Possible AVM, dural fistula?

It is actually not so easy to read an MRI, If you are looking at one single image you have on film. An MRI captures in slices, if you view it sliced and layer by layer you may actually note that what you saw may in fact not be what you thought. I have a brain tumor and I thought many different things about my MRI....until I learned to view it layer by layer and have my nuerosurgeon point out and explain what i was seeing...and yes I noticed something to which actually turned out to be my ear canal...As far as the symptoms...they CANNOT relate people who have brain tumors with 1/2 the symptoms, they will sure have trouble if there is no tumor. Get a second opinion, dont stress and consider yourself blessed to NOT have been diagnosed with a brain tumor....the diagnosis alone is tramatic!

 
Old 08-05-2007, 10:55 AM   #4
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Re: Possible AVM, dural fistula?

Well, A Neurosugeon from the U of Chicago read my scans and said I have a venous anomaly and refers me to a vascular neurologist.

My understanding is a venous anomaly is a normal finding that, when symptomatic, may indicate another problem, such as a cavernous angioma. Yet no one has seen any other problem in my MRI.

So I am back to square one. Although I am fatigued, have pressure in my head, and have dramatic personality changes, not to mention a squealing noise in my ears and sometimes a whooshing noise, I feel they will just say a vascular anomaly doesn't cause this. So what does? I have not been sick for four years and am in great shape. I can't physically do things I did 10 months ago.

I am tired and drained, my family is suffering because of me, and I can't do anything about it.

Any advice? ( besides keep your head up, don't give up,etc.)

 
Old 08-06-2007, 08:02 AM   #5
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Re: Possible AVM, dural fistula?

what exactly did the MRI state about this glob of vessels?anything at all?venous anomalys could be alot of things,the most likely would be what you stated,the cavernous angioma.this is what i had inside my spinal cord,much worse than in the brain since there is just no give when it bleeds.luckily,veinous malformations are considered 'low' pressure while things like the AVMs are very much high pressure type lesions.cavernomas can bleed,but they tend to ooze not pump like arterial malformations would,so thats a really good thing for you.if this actually is veinous fed,it would not actually show up real well if at all on any MRA since MRAs capture only arterial vessels and this is veinous.so getting an MRA would determine for certain that this is indeed a veinous fed lesion of some sort.so it could possibly help in actual confirmed Dx of.just some thoughts there.consulting with a good knowledgable neurosurgeon and a possible neurointerventional radiologist,if needed,would probably be your best bet.but you do most definitely need a NS who actually really knows alot about AVMs and other possible vascular malformations.i saw three seperate NSs and the only one who really seemed to totally understand everything about them was my last one,and he had over thirty years of experience at the U of MN as the head of neurosurgery.honestly,the other two were totally oppsed in their views of these things,that is why i got the third opinion in the first place.it was really amazing hearing two totally different opinions from the very same types of docs.unbelievable really.but it does all come down to who has the most experience with dealing with anything ya know?that is what you need right now for the best possible treatment options,knowledge and experience.i wish you luck with this,and please let us know how things are going,K? marcia
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Old 08-08-2007, 09:32 PM   #6
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Re: Possible AVM, dural fistula?

I am one of the rare cases that actully has a Dural AVM. I would strongly suggest a 2nd qualified opinion on that MRI. A Dural AVM is still pretty rare and tough to diagnose, although it should show up on an MRI. Mine is actually a Dural AVM Fistula that is mostly blocked off by embolization and clipping. However, I do continue to have problems/symptoms with the AVM. Typically the symptoms of my Dural AVM Fistula are: Noise in the head (bruit), Pulsatile tinnitus (ringing in the ears), Swelling or redness of eye (depending on location),Stroke-like symptoms, Headache, Seizures. Primarliy I continue to have problems with the Pulse Nosie in my Ear (bruit), balance, memory and weakness on the left side, otherwise I am fine. Get the 2nd opinion and good luck.

 
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