Pulsatile Tinnitus Caused by Transverse Sinus Stenosis

Hello everyone,

I am unfamiliar with this type of forum so I apologize for the awkwardness. I am a 25 yo female from Portland Oregon. I have been experiencing PT for almost 4 years now with progressively worse headaches and visual disturbances every year. I recently found out that I have Transverse Sinus Stenosis that is causing my PT. My local primary care doctor has gotten me no where... I looked into seeing a Dr. Amans out of San Francisco but proximity and insurance issues may be a hindrance. I am looking to see if anyone else has ever had a similar condition in my local area and who you saw? I am desperately seeking to self refer to a specialist who is familiar with this condition.

Any and all help is greatly appreciated.

Caitlin S.

 

I would recommend you go to UCSF. I don't know anyone specific there, as I'm on the east coast, but I know doctors very experienced with this out here. This can be solved with a stent placed in the vein. I have had this done. It is of utmost importance that you do not go to just any doctor for this. These procedures are common and safe with those that do them frequently and know how to treat and diagnose this, otherwise, it's a gamble. That risk isn't worth taking.

 

I just looked up Dr. Amans. You should be in good hands with him. Let me know if you have any questions.

 

Thank you so much! I really appreciate the reassurance in my dr of choice. I do have questions, I am so early in my diagnosis. I would love to hear your story.

Caitlin

 

I've sent you a message.

 

Did you have any visual symptoms like tunnel vision etc? I’m really struggling with bad visual symptoms (no depth perception, not being able to focus etc) but my head pressure isn’t too bad (no severe headaches). Pulsatile tinnitus is intermittent. I’ve been told that empty sella on my MRI and narrowed transverse processes on my CTV are normal but I know better.

 

Before I had the DAVF repaired, I did have narrowing visual field when my heart rate/blood pressure was raised, like with exercise.

If you're willing to travel to NYC, I could recommend to you specialists whom are some of the best in the world for your issue, and also who treated me.

 

Hi there, yes, I’m in Philadelphia so NYC is not too far. Would any of those specialists include Dr. Greenfield or Dr. Patsalides?

 

Yes, Dr. Patsalides is great. I would also recommend the group at NYU Langone. That's who treated me and placed my venous stent.

 

Great, thank you!