Jay,

Many thanks for your insights. The Vista website was an interesting and informative read. The MGH dr that gave me the Botox also mentioned an MRI could be helpful as he noticed structural abnormalities with the ultrasound.

Nearly all of my symptoms are circulatory in nature so I think that's added a curve ball in the mix.

Thanks again!

No problem. There are at least a couple members on here that have had dr. W's mri done.
I have met dr. D from Boston mass, and again, dont think you could find better treatement. Wish I had some botox right now for my migrianes. Surgery soon for me though.
Cheers,
Jay.

My Werden 10k+ MRI is collecting dust. Is it the Gold Standard? Most Doctors hand it right back to me and tell me he's the only one who can see what he sees. Others think it's the best thing out there, yet I know patients who've had surgery based on the MRI results and they are no better or worse. Is it the surgeon or the MRI which led them astray?

From what I've heard about Dr. D, I too think you are in good conservative hands.

Jay: When the time comes, I'll be pacing and praying down on my hands and knees performing the real TOS Gold Standard test for you. Anne

Hi Anne,

Can you have the Werden MRI anywhere, or does it have to be administered by Dr. Werden himself? Also, did your insurance cover the cost? How does it differ from an average MRI?

Thanks for your help!

Ladylaura: As far as I know, it is done in 2 locations, San Fran and San Jose. Dr. Werden was not there during my MRI, only the techs administering it. I know Dr. Collins does a similar one at UCLA and it sounds like he is present at each one and explains it afterwards.

My insurance paid for 100% of the MRI.

The MRI consisted of several phases. It started with a basic c-spine and then of the BP with my arms down in neutral. I can't remember if the contrast dye was inserted before this phase or before moving my arms into hyperabduction. Regardless, contrast was administered.

Everyone has their own experience with any MRI, but having my arms hyperabducted for an extended period of time increased my TOS symptoms dramatically. Prior to the MRI, I was on no medication. After the MRI, I was placed on medication and have never been able to return to my former pre-MRI state. In retrospect, I would not have done it as it yielded no information other than the fact that things get compressed when my arms are raised. There are non-symptomatic people walking around with compression as well, so for 10K tell me why I am more special then all the rest?

Like everything in the TOS world, this is only my experience. You may have an entirely different sled ride in the tube .

One more thing - I read back through the thread and I don't see if you had a CAT by Dr. Donahue. I thought he had a tweaked machine which he preferred to the MRI.

He does.

I had the CT scan at MGH at the request of Dr. Donahue. In my case, the CT Scan showed the presence of a cervical rib and it clearly showed compression of the subclavian artery.

Prior to my MGH experience, Dr. Kasparyan at Lahey Clinic in Burlington, MA conducted an MRA (not an MRI) with contrast in order to take a look at all the blood vessels. I did this with hands at side and overhead and in the overhead position, this showed compression. This was the key test that finally alerted everyone that TOS was a possibility.

KY

Anne - Many thanks for your insights. I did have a CAT scan at MGH with the dye. It did not reveal anything abnormal, but my arms were down by my sides and straight, so I would not have expected it to actually. I wish they could do what they did in my vascular study but with an ultrasound. The vascular study indicated loss of blood flow in certain positions, but there was no imaging to tell where or why the blood was not flowing.

KY - I'm glad to hear that there is a test like I mentioned above. I will look into a MRA. Thank you for the info, as always.




I called Dr. Donahue today to check in about next steps, as its been nearly three weeks with no change. We'll see.

Thanks to everyone for your support.

Jay: When the time comes, I'll be pacing and praying down on my hands and knees performing the real TOS Gold Standard test for you. Anne[/QUOTE]

No need for extra prayers, or concern Anne, whatever happens so be it....Just make sure you keep on your road to being well. It was a slice.

I was in touch with one of the nurses at Dr. D's practice this week.

He has ordered for me to have a Vascular Ultrasound, which will hopefully give the team more information about what's happening below the surface in certain positions.

Additionally, they have requested that I see another PT associated with their practice at MGH. PT might be difficult for me to swing on a regular basis, as I work about 40 minutes south of MGH. However, we'll see.

I'll update after the ultrasound in a couple weeks.