If you hear whoohing sounds - it's called Pulsatile Tinnitus

This could be a symptom of AVM or a fistula. Pulsatile Tinnitus does not have a diagnosis code to get to get the medical attention we need. You know how hard it is to find the right doctor make a correct diagnosis.
Please read and sign the petition.

Thank You,
Lori

http://www.change.org/petitions/pulsatile-tinnitus-is-not-tinnitus-create-a-pulsatile-tinnitus-diagnosis-code-icd-10-cm

Hello Lori
Thank you for sharing! I can not believe it does not have a code that is shocking!
Hope you are doing well
Angel

I did not know this. Thank you for bringing it to our attention. I've had tinnitus in my left ear for over 30 years. Pulsatile is a lot different than what I have. Not to mention the major difference in the cause between the two of them.

Ben

Interesting.

How is that different from Bruit or is it the same, does anyone know?

Hey Lori. Thanks so much for posting this information. I get the whooshing feeling and the sound quite often. It'll help to know what's going on and at least have somewhere to start with looking for ways to deal with it and what to talk to my doctor about. When it'd first started happening, I'd thought it was something that I was only dealing with and was kind of afraid to bring up..... my thoughts were " I already have the avm.... now what?"
Take care and thanks again.

Bruit= the sounds of Whooshing, Pulsating or you could hear a venous hum.
I have the hum all the time with the whooshing sounds.

If you tell your doctor you hear a Bruit they might know what you are talking about.

Some are not familiar with the name Pulsatile Tinnitus. I am amazed at how many doctors have no idea what Pulsatile Tinnitus is. I was diagnosed by my GP and 4 ENT doctors with Tinnitus. It wasn't until I went on the American Tinnitus Board and described my sounds. I was told to look at a website www.whooshers.com and sure enough I had PT not Tinnitus.

Neuro Interventional Radiologists (NIR) immediately think it is a fistula or AVM and want to do a cerebral angiogram.

I bring this up because we need to have a diagnosis code so that doctors can look for a medical cause. Please click on the link above and read about the difference. It would be a huge plus if you could also sign the petition.

If you have PT you might want to look at www.whooshers.com and also join our FB page under PT. The nice thing about it is it's a closed group so only the people in the group will see your posts. We just had someone that was whooshing for 2 years and a doctor found a fistula and now she is a cured whoosher.

I still need to have the angiogram- but am fearful of the test. If I do it I will go to UCSF and see Dr. Halback.

Do you hear it all the time? Mine is 24/7 but there are some people that do not hear it all the time. Did you have the AVM fixed? I know of one person that had a vascular loop and even though she had the surgery she still hears the sounds.

If you go to the www.Whooshers.com website and click on the cured whooshers link you will see all the different diagnosis for PT. Unfortunately for me not one doctor has been able to tell me why I whoosh!

Thanks Angela. Hope to meet up with you soon!