Wow! Mary thank you for explaining Tinnitus so well and all the info. Also thanks for suggesting the facebook group, I will let her know.

I really appreciate you posting in such great detail, I will pass on all the info to her.

Sorry I did not mean to overboard on all the issues of Pulsatile Tinnitus. Just that there are so many reasons for pulsating tinnitus and some are life threatening. However it can also be due to muscular issues.

My news is that I have actually had a couple of relatively quiet episodes and one very quiet night since I started PT with Ando and Ashton. So as things loosen up hopefully my tinnitus will fade away.

Also I just found out that insurance has authorized the 3D MRI/A/V with Dr. Collins at UCLA. Scheduled for next week. I guess it is the engineer part of me that wants to see the entire picture. Flow rates, blockages etc.

So glad to know your 3D MRI/A/V with Dr. Collins got approved! Good luck and let us know how it goes.

excellent news! I am so glad you are getting help at Ando & Aston. Let us know how the mri goes! I would love to get one too. I wonder if it can tell the difference between disc pain and TOS.
What kind of insurance do you have?

I have blue cross PPO insurance.

I had the MRI/A/V at UCLA on Wednesday and Dr. Collins spent hours with me afterwards going over the results. Dr. Collins is a very interesting and an amazing radiologists and person.
I definitely have TOS with a high left rib and tilted manubrium and compression of subclavian vein , artery and more. My trachea is even pushed off to the side. There was definitely compression of the jugular and venous blood flow at the sigmoid sinus near the left ear. Explains the tinnitus /pulsating tinnitus.

I was great to literally see what was going on and this information will help me get better.

The only bummer was the physician that ordered the test only ordered half of the exam. Found out at the last minute and then his office started to blame other people as to why it was not completely authorized. The office staff said the doctor would not talk to the insurance company to get the rest of the exam ordered. So I ended up paying cash price for part of it. Time to find a different doctor. The fact the doctor would not make one phone call cost me $2K. Insane.

Dr. Collins recommended Dr. McKenna at Cedars or Gelabert at UCLA.

wow, bummer about the $, but thats great news that he can see all that! Do you think it would help just for nTOS too? I have blue cross ppo too- so I am going to check into it. I saw both Dr. M and Dr. G. for consults. I much preferred Dr. G. How is the pt going? I will be at Ando and Aston Monday and Wed.

I may still get approval for the second half of test. If the doc called them. But it was worth the cost. I would have never found out about everthing. Explains so many of my symptoms. I had no idea how much damage there was.
So I would definitely recommend it for any TOS patient. Itakes it more real than just the pain and stiffness. Collins can see all the nerves as they come off the c-spine and pass through the BP.
My contract with blue cross requires authorization. Just be careful because there are multiple ICD codes since he does MRI of shoulders right and left and the MRA of BP. Blue cross approved the MRA of BP but then wanted more info for the shoulder MRI.
I'll be at Ando pt Monday and Wednesday too. Monday 3:30 and we'd in am. So far it's good but have felt really crappy. The TOS which appears to be neuro and venous is affecting my entire body. Legs hurt due to compression of jugular and tinnitus is very mentally exhausting.

Mary