Possible

Hello,

I'm new to the board. I have a possible AVM. My symptoms started with pulsatile tinnitus in the left ear. They were sure that I had an accoustic neuroma so it has taken many months to get where I am at. So much focus was paid to the ear that no one really checked the neck area. Finally I noticed a lump on the neck and that when I pressed on this area the tinniutus would get alot worse. Now when I touch it I get "pins and needles" over my entire head. It's a sickening feeling.

I'm supposed to have an angiogram on March 29th. Hopefully I can finally find out what's going on. Has anyone else had symptoms like this?

I'm really glad to find your group. It's hard to talk about to alot of people because they just don't understand.

Thanks..Melinda

Hello Melinda
Welcome to the site,the one thing about AVMs is their all alike but different.I know that sounds crazy but it true its a different symptom every day with some of us.About the time you get comfortable with one (as much as you can ) here comes another. By the way we are glad you found too

cya Gordon

Melinda: I too had your symptoms for YEARS and my neurologist ignored it…I have an avm. I had three angiograms/embos but mine is too complex…apparently the longer you have them sometimes they are harder to treat…my case proved true. I am a nurse also and just returned to work afgter a year! I am here for you in any way and if you have any questions please please ask! Keep positive and keep the faith…unfortunately I know the waiting is the hardest…I will keep you inprayer…xoxox Mare

Mare:
Thank you so much for responding. It is the most frustrating thing. I’ve seen several doctors and it’s hard to get them to listen. I’ve really found out more by searching on the internet than I have at the doctors office. This last doctor that I went to in St. Louis he took more of an interest in me and my overall symptoms than anyone has. But he is so busy that it’s hard to make any progress. I hope I haven’t waited too long. So we’ll see. Are your symptoms all gone? I hope you are doing better.
Take care!
Melinda

Mare said:

Melinda: I too had your symptoms for YEARS and my neurologist ignored it…I have an avm. I had three angiograms/embos but mine is too complex…apparently the longer you have them sometimes they are harder to treat…my case proved true. I am a nurse also and just returned to work afgter a year! I am here for you in any way and if you have any questions please please ask! Keep positive and keep the faith…unfortunately I know the waiting is the hardest…I will keep you inprayer…xoxox Mare

Gordon:

Thanks for responding. I don’t know how all of this is going to turn out but it’s nice to be able to talk to people that understand the condition and the frustration of it all. Sometimes you think OK what next. And you are so right about new symptoms everyday. It’s unreal. Good luck to you and take care.
Melinda

Gordon D said:

Hello Melinda
Welcome to the site,the one thing about AVMs is their all alike but different.I know that sounds crazy but it true its a different symptom every day with some of us.About the time you get comfortable with one (as much as you can ) here comes another. By the way we are glad you found too

cya Gordon

Hi Melinda,
I too have an AVM, it took ages for my doctors to work out what it was, I started with a washing machine like sound in my left ear. My GP told me I chose to hear this sound that is why I was hearing it. Changed GP after that. Several tests & MRI’s later I was diagnosed with a Dural ArterioVenus Fistula. It’s the waiting & not knowing that is frustrating. As I was told by some wonderful people on this site, ask every question you want & learn as much as you can from fellow AVM survivors. Above all keep positive, I found that helps a lot…Have you in my thoughts…all the best. Jude.

Hi Judy
If I was a doctor and that was the best diagnoses I could come up with (you chose to hear them) I would ask for my money back from all that schooling I took. Did you look under the desk to see if he had web feet ? Oh by the way I have adural arteriovenous malformation also. Have a nice day cya later Gordon

Hi Gordon, No, I never looked to see if he had web feet, he does try to be funny most of the time. He wasn’t joking this time. In the end when he found out what I had he said he’d known all along. I still don’t go see him. Thank goodness I’m now in the hands of some wonderful neurosurgeons & things are progressing. I’m now waiting for three months to see what is going to eventuate with my AVM. I had it embollised in Nov. 2009 but the washing maching noise was back 6 weeks later, am told it’s too risky to do anything at this stage as the vein in question is a feeder to my brain.
How are you handling your AVM? Is all Ok?..Thanks for taking the time to reply, it’s nice that people care…you too have a lovely day…Jude.

Gordon D said:

Hi Judy
If I was a doctor and that was the best diagnoses I could come up with (you chose to hear them) I would ask for my money back from all that schooling I took. Did you look under the desk to see if he had web feet ? Oh by the way I have adural arteriovenous malformation also. Have a nice day cya later Gordon