Pixified,

That's understandable. If I can't do normal everyday things...put dishes away, get the trash together, and most importantly, pick up my daughter...that's it.

I don't have any of these symptoms/problems...yet...but it looks like I do have ATOS. If I wanted to, I could probably press a 50lb dumbell over my head without issue. I don't have any heaviness in my arms or fatigue in any way. No swollen hands, no vein prominence, no coldness and such. My main symptoms are: burning / pinching pain on the scap and in the armpit area, odd elbow pain, and pinky/finger numbness (especially when I wake up in the middle of the night).

I guess the question I have is, "Is it just a matter of time before I get to this more symptomatic point?"

If I'm reading my reports right, I'd think that the evidence of a high grade stenosis in my right subclavian artery has me on the same track as you eventually.

KY

Ok, had two additional appts. yesterday. The first, a follow-up with vascular surgeon Adam Vernadakis at Lahey Clinic and then second, a 2nd opinion with Dr. Dean M. Donahue at Mass General.

The good news: Surgery is not in the cards...at least not immediately.

I first met with Dr. Vernadakis. He had previously felt the "bruit" over my subclavian artery and had me rushing off to surgery "sooner rather than later" 2-3 weeks ago. He informed me that the test results showed everything fine with hands held down, but there was definitely a kink in the subclavian artery with hands held up. That said, blood flow was excellent and it didn't appear that there was any damage to the artery. This alone had him backtracking on the surgical option. Additionally, he felt my bruit and indicated that it didn't sound as bad this time around. All this in combination with my diminishing symptoms had him put me in a "wait and see" type mode.

Dr. Vernadakis also indicated that there was no cervical rib or boney abnormality causing the problem. In his mind, the anterior scalene muscle was acting like a "rubber band" over the subclavian artery. If we had to go surgery, he indicated I'd need one month of rest and after two months I'd be good to go. Didn't sound so bad. He also indicated that he had done this procedure "30-40 times." Not sure if this is a lot or not. One interesting tidbit: I asked him about CT guided botox to shrink the scalene muscles. Nope. Will not do it. Too dangerous he said. I thought this was odd.

A couple other things on Dr. Vernadakis. He has a little bit of a "nutty professor" type personality. It didn't make me very comfortable. A little young as well. This, combined with his quick rush to surgical judgement and now a backpeddaling, has me a little uncomfortable with him as a potential surgeon. Something I would keep in mind when talking to Dr. Donahue later.

So anyway, I left feeling a bit relieved. Still, I had Dr. Donahue to come and I felt, based on opinions here and research elsewhere, that this was THE guy to talk to so I wasn't holding my breathe.

Later in the afternoon, I met up with Dr. Donahue at Mass General. When I met him he had just come out of an 8 hour TOS surgery for a minor league baseball player. Immediately I felt "I'm in the right place." My first reaction:

* Of all the multitude of doctors I have seen over the last two years this was without a doubt the nicest, most understanding of the bunch.

What a great guy. Unlike so many, he really understands TOS and LISTENS to you. Dr. Donahue just has a great way about him and he makes you feel very comfortable. This was entirely different than Dr. Vernadakis.

A full battery of physical exams were then executed along with a discussion of my history. Dr. Donahue then went on to explain that he is NOT quick to diagnose TOS and refused to do so with me. He indicated that he had looked at the MRA that showed the subaclavian artery tightness along with all the ultrasound tests, but he wasn't sold. He doesn't think MRAs are 100% correct and wanted to pursue more exploratory tests that were unique to Mass General. I thought his attitude towards TOS was great and clearly, Dr. Donahue was going to go the "extra mile" here. Even more, it's clear that Mass General has the testing firepower to do so.

Dr. Donahue does have a hypothesis of what is going on with me. He thinks that I do have an abnormality in my scalene muscle. Apparently, it's possible that my insertion makes me predisposed to scalene muscle tightness. This is consistent with Dr. Vernadakis, BUT Dr. Donahue's explanation dug much deeper.

So, next step: A unique CT Scan that was developed by Mass General that really takes a more detailed look at the anatomy around the thoracic outlet. If his hypothesis proves correct, the next step would indeed be a botox injection into the scalene muscle. Dr. Donahue indicated that he's used this teqhnique hundreds of times and apprx. 2/3s of his patients have symptoms clear up. This approach would also allow me to use a more aggressive physical therapy approach.

And lastly, Dr. Donahue DID NOT think I needed surgery. I thought this was shocking.

So, I'm somewhat relieved with the outcomes yesterday. First, I don't feel like I'm at risk of dropping dead. 2nd, it sounds like there could be a non-surgical path here. And lastly, even if I did need to go the surgical route, I am super comfortable with Dr. Donahue. I can't stress enough how impressed I was with him.

Hope this is helpful to others.

Thanks.

KY

Just want to warn you, this is exactly the approach Dr. Donahue proposed for me when I saw him in late March. I had the CT scan the same day I saw him, since it's such a long drive for me (170 miles each way). A week later he called with preliminary results from the CT scan, and proposed the botox injection. Warned me that insurance often objects to it, but they keep trying until they get approval, but this can take weeks to even months.

Insurance did indeed refuse to approve the botox injections, got the letter within two weeks. A week or so later called the Boston office to make sure they would appeal it. Was told to fax up my letter and she would make sure the right people got it just in case they hadn't already gotten to appealing it. Sent up further info a bit later, and another, local doctor's further notes in May. So, they have had contact and reminders with me.

Last week and this week, I have spent several hours during 4 phone calls with my insurance company. DONAHUE'S OFFICE DID NOT APPEAL THE REFUSAL. THEY HAVE DONE NOTHING SINCE THE ORIGINAL REQUEST!!!!! I don't know if Donahue himself is aware of this, or has anything to do with this, or if it's just the office people. When I talked to the right one today, she started giving me this story about how long appeals take when dealing with the insurance companies until I finally shouted/wailed at her "BUT YOU DID NOTHING!!! YOU DIDN'T APPEAL!!!! I HAVE BEEN ON THE PHONE WITH THEM FOR HOURS!!! YOU DID NOTHING SINCE EARLY APRIL!!!" And she dropped that approach and just said she would try to get it settled for me by tomorrow (yeah, excuse me for not holding my breath).

I wonder if he knows that this is how his staff "handles" things, by not doing anything, and that's why it takes so long and is so hard to get approval. If HE had called in, a "Peer to Peer" call to my insurance's doctor in the first 10 days after the initial refusal, this whole thing could have been settled right then and there. Now it has to be a full-fledged appeal, records and paperwork and all. Now, on top of two and a half months lost, now it means tons of procedure and regulations and waiting until they get to it time.

So...
Do not wait and trust them to handle things. Be a pest, be persistent, deal with your insurance company yourself, don't trust that they are doing it.
The Boston office does not deal with the insurance issues. The Salem office does. So don't talk to Boston when checking up on them, call Salem (Kathy).
Since you seem to be closer than I am, if it seems to be dragging on, just make an appointment and check in with him directly.

I'm hoping he's a good doctor with bad staff, because it's kinda hard to have any faith in this whole situation, now.

Wow. Thanks for the heads up. That is incredibly annoying...especially if relief is right around the corner.

I called asap to get the CT Scan scheduled. This will be next Tuesday.

Dr. Donahue did casually mention this type of process. Ugh.

I'll have to be a pest.

Keep us posted on your progress.

KY

KY,

Just curious about a few things. What did Dr. D. have to say about the vein involvement shown on the MRA? Did he discuss any possible pec minor involvement (since the MRA showed issue with the axillary artery as well)?

I'm really happy for you that things are looking to turn out the way you were hoping. Good luck with your CT scan and keep us updated!

He did mention pec minor, but not that much. Dr. Donahue indicated that it could be a target for botox injection as well and worst case if surgery is needed, could be a minor target as well.

God knows he tries to be even in his presentation to patients to ensure that they don't get too high or low, but I read Dr Donahue to be pretty confident in his hypothesis that the abnormal scalene insertion is the major culprit. He also noted on his physical exam when pressing on my neck above the clavicle that "jeesh, you're really tight here."

KY

Well, new test result from Dr. Donahue at Mass General. He called today post CT Scan result. The findings were surprising to me. Originally, Dr Donahue had hypothesized that I had an abnormal scalene insertion. Nope. The finding:

* Elongated transverse process, on both sides, but more prominent on the right.
* Transverse process on the right seems to have fused with the first rib.

Dr Donahue suspects that this is putting the pressure on the scalene muscle which is compressing the subclavian artery and creating the symptoms.

On one hand, kind of a bummer. In reading these boards, this finding could potentially put me in a first rib removal down the road. On the other hand, it's good to finally know once and for all what the deal is after 2 years.

All that said, Dr Donahue doesn't even want to pursue the CT guided botox injection at this time. My symptoms have diminished dramatically since all the scalene stretching in April to the point where maybe I hit a 1 or 1.5 on a 1 to 10 pain scale. We're going to regroup in the fall and see where we are. Right now, surgery is not really an option. Things would have to reverse direction in a big way.

I really hope this all was a case of a) boney abnormility making me predisposed + b) excessive repetitive stress due to resistance training in the gym + c) creation of forward posture, tight anterior muscles...and now, I'm unwinding this due to stretching.

KY

Curious what led you initially to ATOS verus just regular TOS? How did you ultimately decide it was the first? What symptoms differentiate the two?

Nobody has told me specifically what I have actually. I labelled it ATOS since tests revealed that my subclavian artery is being compressed. That said, my symptoms are all neurological (pain in shoulder, upper arm), not arterial (cold hands, etc).

I'd actually gather that I'm more neurological. It's my understanding that the brachial plexus envelopes the subclavian artery, so if the artery is getting compressed, there's a good bet the nerves are as well and thus, the symptoms.

KY