Tinnitus, Deafness and Ear Problems Support Group
This group is for those coping with Tinnitus (ringing ears or ear noise), hearing loss, and all ear issues. Join to find support and get advice from others.
Im a lady who has had Tinnitus in my right ear for many many years...i lived a life and always tried to cope...Suddenly....1 1/2 years ago a loud rumbling began in my left ear....MRI MRA studies and a neuro radiologist decided I had an aterio-venous fistula in my brain and did a Cerebral Angiogram...I have been invaded in so many ways and nothing was there. The noise however...has grown and grown and grown to where the loud rumbling like a motor boat drowns out every room Im in...and there is litte sanity left to my day. Sleep is disturbed from the rumbling and suicide is being considered...PLEASE...how can I connect with other?
I have yet another MRI with contrast this week...The noise grows and changes weekly...i need some friends to talk to with this...
I live in New York and would like to get some way of getting help
I have yet another MRI with contrast this week...The noise grows and changes weekly...i need some friends to talk to with this...
I live in New York and would like to get some way of getting help
I have shared my full Story on my Blog
Video Link:
http://tinnitus.help333.com
Many of us have had Tinnitus, dizziness, hyperacusis etc for many years. Go through the previous posts on this site plus go to TinnitusTalk another good site and do the same. This is all about managing tinnitus and it is very difficult however it can be done as we all do it. Anti anxiety and sleep meds are essential right now for the short term. It is lonely when others don't understand so come here often.
these are the better days of my life .... really
perception amongst severe affliction and no affliction means a lot
But, I want more to speak to your MRI situation. This may be a little long, but it's important. I had Acromegaly. They found it accidentally. But because it was in the early stages, one of the "gold standard" tests came back normal and they told me 'awh, we were wrong, your fine, you don't have it, go away lady'. Well, as soon as I was told my IGF-1 was elevated and I did the research, I knew that the gold standard test was often normal in early or mild cases. I knew had acro and a pituitary tumor is the cause 95% of the time. But, no pituitary tumor showed up on the first MRI. It took me 3 years, 8 MRI's, 2 CT scans, a Pet scan, and Octreoscan, 2 different endocrinologists, 2 or 3 consults at Stanford, and two different surgeons before they said, yes you have a tumor and lets take it out. You really have to do your research and be your own advocate and demand to have 2nd, 3rd, or 4th opinions on these things. There are all kinds of MRI's, CT scans, PET Scans, etc., and the Dr's. read them differently. I don't know anything about aterio-venous fistuals, but I encourage you to keep pushing and do your research to be sure you are getting the care and evaluation that you are entitled to. The final leg of my journey was getting Stanford to review the "dynamic" MRI was done a year earlier by my HMO. The Stanford tumor committee looked at it and said they thought there was a tumor, when the Tumor committee at my HMO said there wasn't one. After that, I saw one surgeon at my HMO who said, "well maybe there is, maybe there isn't" yada, yada. I asked for a second opinion. 2nd surgeon comes in say's he's read all about my case, pulled up the MRI, pointed to my Pituitary, said, "there is your tumor and if I were you I'd have it removed!". Had it removed a couple of months later, it stained positive for Growth Hormone, and my tumor and my Acro is gone. Moral of the story, don't settle for one opinion, or one Dr. , or one test. Do you research, (stick to the legitimate medical reports studies, not the wacko's). Took me 3 years.
PM me if you need to talk about it.
John
I can get you some. No Rx, no hassles. Satisfaction guaranteed or your money back.