Venous TOS for 9 years
 

I've been dealing with a throbbing headache, blurred vision, ringing in the ears, postural tachycardia and heart failure for 9 years. I just had an MRI done showing a chronic occlusion in the subclavian vein and the internal jugular vein. I had Dr. Collins at UCLA look at my MRI and he said that occlusion will cause these symptoms.

I'm wondering has anyone gone undiagnosed as long as I have and was a surgeon able to reopen the vein or do anything to fix this? I'm scheduled to see Dr. Linker in Louisville in Sept. No one on here has said anything about him so I'm not sure what to think. I'm also hoping to see Dr. Collins at some point to get a better scan done. I'm a little scared to get on a plane though because one time when I flew to see a doctor over these years as they changed the air pressure on the plane my head felt like it was going to explode. I really don't know how I haven't had a stroke or aneurysm in 9 years of this. So I'm hoping this doctor in Louisville has a decent plan.

Did he say what was or might be causing the occlusion?
Any compression or impingement mentioned?

Or is is blocked due to internal clogging?

Often is is easier to repair vascular problems than nerve related ones..

Were any collaterals mentioned?
Often the body will build new ways around a blockage..

Well the radiologist here wrote on the report "chronic occlusion of the subclavian vein" and the doctor told me that means it's clotted. It also shows "extensive collateralization" I got the MRI images on a disk so I could look at them and that area looks like a complete mess. So I'm guessing that's collaterals growing all over the place.

Dr. Collins looked at it and said my anatomy is positioned to where the clavicle will come down on the first rib and pinch that vein shut, so that's probably how this all got started. He could also see the increased venous pressure in my face and brain on the right side, especially around the eye.

Ah yes, that will do it ..
Sometimes the surgeon doesn't know until they get in and see the condition of the vein.. but getting the rib removed will make more room so the ongoing damage should stop.


As always seek out the best surgeon that you can... ask questions..
how many of these does he do per year?
Is he highly rated on the dr checking sites? etc...

our DRs & PTs sticky thread-
http://neurotalk.psychcentral.com/thread135.html

I'm wondering if I should see someone that will do vein reconstruction because I'm in pretty bad shape. This guy in Louisville only takes out the rib. They just ignore my heart failure and don't seem to realize that it is caused by this venous blockage that's been ongoing for ages. I don't see why doctor's can't understand that.

Is he a vascular surgeon? or maybe a cardio thoracic surgeon?
Who is treating you for the heart failure stuff?

I was diagnosed with Paget Schroetters Syndome in 1966 when I was 19, Doctor chose the conservative approach and did not operate. Was this the right decision, I really don't know but I suffered every day.

Fast forward 45 years and I elected to have surgery with Dr Thompson in St Louis, usual surgery plus he replaced part of the subclavian vein with a donor vein. My arm feels like normal again blood flow wise, I am still having some issues and Dr Linker is my Dr. I see him again on July 21st, I suspect it may be scar tissue.

If I can be of any assistance, please let me know

R

What kind of issues are you having now?

"Is he a vascular surgeon? or maybe a cardio thoracic surgeon?
Who is treating you for the heart failure stuff? "

Dr. Linker is a thoracic surgeon so that's why I don't think he can solve this problem on his own. I see a Dr. in Louisville that manages my heart failure. I just take coreg and get an echo once a year. But if I could actually get venous reconstructive surgery then I'm thinking my heart would be able to improve as well.

Nothing major just occasional cold & numbness in my hand, pain in elbow & shoulder blade and muscle weakness when doing anything overhead. But this nothing compared to the days before surgery.

Dr Thompson is a vascular surgeon and is the director of the thoracic outlet for Barnes Jewish hospital in St Louis. He is an excellent dr for TOS surgery but he does not see the patients after surgery, his staff handles that area, until you are released to go home. That was about 8 days for me.

I don't have any heart issues so I can't comment on that question.

Did you check your pulse when you have your arms overhead like that? My arm and hand does that as well and I lose my radial pulse when in those positions. Stretching the pec minor is what should fix it, but in my case this throbbing throughout the whole area keeps making the muscles twitch and stay tight. When you do the pec minor stretches you can raise your shoulder to prevent the muscle from crushing the blood vessels. (assuming this is what your issue is)

Well I'm trying to get in to see Dr. T. Had my records sent and I'm waiting to hear back from them.