Freakish massive facial vein

By Beccy Thursday, November 19, 2009

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Its been a long time since I have posted ... although I have had developments of new symptoms over the last four months.

So I will share.

With my migraine varients I have never got any pain, or any type of headache. Just strange neurological symptoms. Scary. Yucky. Although now basically controlled with Sandomigran, after 10 years of searching for help!

Over the last 5 months I have been getting really bad unliateral facial pain, on the right side of my face. In my eye, ear, gums / some random teeth, my nose and in my throat. I have gone to the ER with it twice. The first time I went in my consulting Neuro just happened to be on-call at the hospital! The obvious thing that he came up with was my neck, so he sent me off to the Physio. The physio couldn't find much which I expected. I believe my neck has just been tensing up due to the facial pain.

The pain got killer again and I went back to the ER on Monday night. I talked about my pain and the pulsitatle tinnitus I have been getting in my right ear. So he did a CT with contrast. And holly cow! It showed up this MASSIVE totally abnormal vien on the right of my face. There is meant to be a vein where mine is, its just like totally massive. So its not out of place, just huge. The Neuro who was treating me on my second admission has never seen it before. Neither has anyone else! He researched it and couldn't find anything. Although, he doesn't not believe it to be really related to my pain. It runs right along the areas of my pain, besides from that it doesn't go really near my ear.

I have been thinking tonight. None of my symptoms in regard to anything are typical. And this vein is in no way typical. So why does the medical profession still try to place me in boxes, instead of considering ... I have untypical complaints and a untypical structure .. so maybe the two belong together .. instead of still trying to stick me in to the 'typical boxs'?

I understand my Neuros views, from what he has been taught and experienced - it shouldn't fit together. But considering everything is so unique, why CANT it fit together?

I dont know if that makes any sence. I just had to rant.

So I have attached the image of my CT scan, incase anyone wants to have a look. WARNING: the image is GRAPHIC CT SCAN OF THE SKULL, if this type of thing distresses you, I wouldn't recommend looking at it. Scroll down if you want to see it.

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Comments (13) | Add comment

Chuck

11/20/09 5:51pm

Tough diagnosis! Is it possible that the facial pain is really from trigeminal neuralgia? My other half has the symptoms for over a year, and has had periods of remission. Our neurologist wants an MRI/MRA with vascular loop and contrast. The neurologist diagnosed it as TN, but MS needs to be ruled out. We've not done it yet, as cost is high. We are attempting to use meds (Baclofen) to handle the spiking, random pain. While a cracked tooth may cause the pain it won't show up on an X-ray. Even tho' you may seem to isolate the pain point to teeth, don't start pulling them, pre MRI study! The TV show "The Doctors" had a short clip in Oct or Nov 09 that depicted TN cause and skull operation done at UCLA to work on the trigeminal nerve root.

Beccy

11/20/09 9:19pm

Hey Chuck!

Neuralgia has been thrown around here at there. The ED Dr thought it sounded like Occipital Neuralgia, but once I saw the Neuros they thought it sounded more like a mixture of Migraine and Nerve pain. My Physio found one spot on my head of nerve pain, but couldn't and cant trace it.

Is your wife a member of the Living With TN website? It is fantastic, great group of people like here.

They have put me on Epilim to see how I go on that.

My MRI came up fine, although due to the tinnitus they did the CT with contast. And that vien was the result!!!

Chuck

11/21/09 1:50pm

Nope-just me. The family filterer. So few local professionals seemed to have not contacted TN that I wanted to add it to the mix. Even the MRI tech of 12 years had not known of this problem. It made me wonder about how some people get credentialed!

Regards-Chuck

Nancy Harris Bonk, Health Guide

11/20/09 8:10pm

COOL! Painful though, but very interesting. I do think it is time to enlist the help on an expert - not just a neurologist. They are fine doctors, just can't be experts in everything. Migraine specialists are experts in one area THE HEAD!!

Check out our list again....someone on it may have an idea ....

Beccy

11/20/09 9:23pm

Hello lovely Nancy!

Yes, I am in limbo at the moment. I dont quite know which was to turn. The Neuro's dont think the vien should be causing me problems, although - they know nothing about it. So I find that a little hard to swallow.

I am going back to see my GP on Monday to see what she thinks. I think she wants me to have a MRI or similar on my back, to see if that could be a possible cause. Although she is usually pretty good covering all bases like that.

She might send me off to see another specialist. Yes, the list here is great. I have seen one in Randwick (I think off the top of my head!) .. and I will consider going to see him.

Its just frustrating. No one ever has a solid answer for me.

csinger

11/22/09 10:21am

Beccy - Have you considered consulting a neurotologist? They specialize the neurology of the ear, I believe. I went to a clinic in San Antonio Texas - Dr. Susan King - because I suffer from severe migraines with severe tinnitus and hearing loss. It might be a good idea for you to get a another opinion from someone with that specialty.

Beccy

11/22/09 10:26am

Ive never heard of that speciality! Definatly something to look in to!

I get pressure in my ear. We actually first thought I had Otitis Media with Effusion. My right ear feels different to the left. Im consantly popping my ears, and I dont really know why cause it doesn't do much! Sometimes the right one will pop, although it generally is different to my left ear.

Thanks for the heads up with that. I am seeing my GP on Tuesday so I will mention it.

Nancy Harris Bonk, Health Guide

11/22/09 6:29pm

What did the report say? I'd love to know what that says!

Chuck

11/25/09 4:43pm

Constantly popping your ears? Do you mean relieving the inner ear pressure? Is this action compulsive, or for the actual need to restore hearing to normal?

Sometimes I have weather related post nasal drip. The fluid can cover one or both mouth to ear tube openings and the result is an annoying pop-like sound until I stop the nasal drip. Ear wax touching the ear drum may feel like pressure and can reduce the perception of the full hearing of sound. If it's ear pressure that you are relieving you might have an inner ear infection that is building up an internal liquid or gas--and you mechanically relieve it. Is your mouth anatomy normal? Any inflamation or growths?

Regards, Chuck

Beccy

11/25/09 8:31pm

Hey Chuck,

Yeah, its pressure in my right ear. I keep trying to pop it. It will pop, but still feel full.

Since I wrote this post, I have been to see my GP and she has a feeling its actually mastoiditis. So I am going off to see yet another ENT tomorrow.

The whole thing started off when I had a cold about 5 months ago. Once the cold had gone my ear was weird. I went to see to local GP's twice. They said it was glue ear and not to worry about it. Then the pain started ... I went back and they gave me nasal steriods which did nothing. And thats where its all gone down hill.

Since the early onset of symptoms I have seen:

Two Neurologists, 1 Neurology Registrar, 1 ENT Registrar X 2, 1 ENT Specialist, 3 ER Dr's and 4 GP's.

So I agree with Mastoiditis more than it being a migraine. I know my body pretty well. I am even aware of my mastoid bone on the right side. Sometimes it gets a little uncomfortable / sore ... so not a particularly good sign! Woke up with a bit of blood in my right nostril today as well. Not sure if its connected, but that never happens.

Toot-a-loo!

Chuck

11/26/09 2:32am

Interesting. The TV show "The Doctors" mentioned a tiny ear drain they sometimes have to install onto the eardrum when an "-itis is to be delt with. It's to drain fluid that won't exit into the mouth. Am interested in the outcome. Best of! Chuck

erwanda

11/26/09 3:34am

I got an ear infection 2 months ago-lots of pressure and pain. I had thought I just had a sinus infection developing. I ended up having a tube put in my ear which helped greatly. After 2 rounds of steroid and 2 of antibiotics, I had an MrI and it showed i had mastoiditus. The thinking is that with the tube I should continue to drain and heal. Mastoiditus is nasty business, so I hope that they are correct. I have lost some hearing through all this but am hopeful that this will all resolve. When the tube was put in there was an amazing amount of fluid that came out.

Beccy

11/26/09 3:40am

Ohhh! Interesting!

Was that all done as a in-patient? Can I ask what your pain was like? I am getting facial pain ... all unilateral on the right side. In my eye, ear, nose and gum. That pain can be horiffic. For the most part, I get stabs in my ear, I have a really sore neck and just feel randomly awful. No energy at all.

Freakish massive facial vein

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