Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 11-20-2014, 09:49 PM #1
jrodefeld jrodefeld is offline
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Default I'm suffering with vascular Thoracic Outlet Syndrome. I have a few questions.

Hello everyone,

I am new on this forum. I've been diagnosed with Thoracic Outlet Syndrome, specifically vascular TOS. I've had MAJOR symptoms and problems for many years now. I just turned 30 years old and I've had TOS since I was 21 or so and I've had serious, major symptoms since I was 24 or so. So it has been going on a long time.

I am about to have surgery on Dec 4 at UCLA. Actually, I had a first rib resection surgery that was done about five years ago. Many, but not all, of my symptoms returned after six months to a year. Recent imaging shows that my resected first rib grew back and is now causing compression again. The doctors are saying that this is one of the only times they have seen this phenomenon happen.

The first time they went in under my armpit. They resected the first rib but left the scalene muscles alone and the cervical rib (I have congenital cervical ribs). This time they will go in from the front and do a more thorough job removing the scalenes, cervical ribs and first rib.

I don't know how many of you are familiar with Dr Collins at UCLA but he is supposed to be one of the very best radiologists for diagnosing TOS. I've had two extensive workups with him and he clearly demonstrated compression of my subclavian veins and arteries and issues with my jugular veins as well.

I am working with a very good neurologist named Dr Agnew in Santa Barbara California. Unlike last time I had surgery, I will be extremely diligent working with him after surgery, doing physical therapy and making sure that the results last and I stay well.

What I am very concerned with though is the severity of the symptoms I am experiencing. It feels like I have a blood clot, an aneurysm, a pulmonary embolism, dissection or other life threatening problem. The issue is that I have been living with completely crippling vascular symptoms for FAR longer than I should have. I am worried that the tests that have been done have underestimated what is going on.

Frequently I feel as if I am going to have a stroke. Frequently I feel as if I can't breathe, I feel a pounding, throbbing sensation in my chest and neck while my hands feel cold and damp. My hands never get blue or anything like that, but my arms clearly get swollen and heavy.

In my chest I feel a pounding, swelling and it feels like I can't really take a deep breath.

In your experience, is it very important to know for sure if there is a blood clot, or damage to a vein or artery before they do surgery? I have had a great many tests and I assume they would have looked into most of these things, but I am still worried about it. I definitely trust Dr Gelabert (surgeon at UCLA) and the doctors who are helping me. I assume that if it is clearly a more extensive problem than they anticipated once the surgeon gets in and looks at my thoracic outlet, he will just modify his plans and fix whatever problems he sees?

Have any of you had blood clots, aneurysms or damage to the veins or arteries from long term TOS compression? How did you recover?

I appreciate the help.
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Old 11-21-2014, 09:23 AM #2
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Sorry to hear you had problems after the surgery.

I got subclavien DVT last November. It was quite big thrombosis and it was obvious immediately after they did ultrasound. I didn't have many symptoms leading to one night when I woke up and my arm was huge and purple.

They did do thrombolysis (not sure why) and only put me on warfarin (and heparin for a few days before). I didn't actually had many problems. My arm was gradually getting better (in appearance/less swollen and dark) and I would say that after 3-4 months it return in normal state. I still have one prominent vein over my shoulder which does not bother me.

I didn't have PE.

After they did all the blood tests (for thrombophilias) they did MRI and found I probably have vein TOS on both sides. I am yet to make a final decision but I will probably do the surgery, although I have zero symptoms and MRI scan was not the clearest one for the diagnosis.

My vein is patent, not 100%, but for around 60-70%.
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Old 11-21-2014, 10:19 AM #3
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Welcome jrodefeld.
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Old 11-21-2014, 11:44 AM #4
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Hi there! I also have ATOS, VTOS bilateral, I never got a clot but had surgery on both sides. From what I understand the surgeon will deal with whatever else they find when they get in there so don't worry. if you had a blood clot you would know, they are very painful and your arm/hand would be very swollen, purple and very painful.
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Old 11-21-2014, 05:39 PM #5
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Default Hello and Welcome!

You have posted some very thought provoking questions. With December 4th right around the corner, I feel for you. Is there any way you would be comfortable postponing your surgery date in order to get a second (or even a third) opinion, just to increase your comfort level a bit, as well as to give you a little more time to get the answers you deserve before going into this risky procedure?

I wonder, too, about a few things in your case. First off, I notice you said that the original surgeon (was that Dr. Gelabert?) left your anterior and middle scalene muscles alone, simply taking the first rib (I think). But they would have had to have resected the scalene muscles, unless they were attached to your cervical rib and not to your first rib (as is the case in most of us), and they also left that cervie rib intact. Am I missing something here? If they did take both ribs, I know that UCLA's protocol is to cut just 25% of the scalenes in order to get that first rib out. Have the remaining portions of the scalene muscles subsequently reattached themselves to other structures, or have they behaved properly and atrophied up your neck (she asked, hopefully)?

There's a fairly recent thread on this forum about Dr. Collins, which you can pull up, if you'd like, by using the "search" function located in the upper righthand portion of your screen (just type in his name where it prompts you). I will say the reviews are a bit mixed, esp in terms of TOSers being able to get their surgeon of choice, WC judge, whatever, to take his findings into account in their TOS case. Dr. Agnew is the only one I know of (outside of the UCLA system; those docs stick together!) who will review his reports and images carefully, which is a shame considering the amount of time he so obviously puts into them…

I think it's wonderful that you have a Pain Management Physician (PMP) with a background in Neurology (Neuro), and I have heard nothing but good things about Dr. Agnew. (I thought he was retired, though. Now I'm tempted to pick up the phone and make an appointment with the man myself!) Dr. Jordan, whom you may have heard of, is also a PMP/Neuro, which is great for TOSers, I think. He's an expert on the disorder. But back to him in a moment.

I don't know how to say this next thing diplomatically, so I'll just come out with it and you can take it or leave it, OK? And you should know that my case is one of so-called "true" neurogenic TOS, which has m a y b e (just maybe!) progressed to neurovascular TOS due to a failed 1st rib resection in Denver 9 years ago, with Dr. Annest (through no fault of his own, I had an accident shortly after which compromised the results).

Anyway, I'm certainly no expert on vascular TOS. But I think your surgeon should have known to take the ENTIRE rib out, the first go-round. If I knew that as a layperson from my own piddling research back then, then s/he CERTAINLY should have known better. If the problem was one of access owing to the transaxillary approach, then they could have easily made a second incision, either sub- or supra-clavicularly, to get that sucker out! Just my opinion. But I think I would have a hard time trusting that surgeon to do the "re-do" operation. Again, I'm assuming it's Dr. Gelabert we're talking about here. I've met with Dr. G briefly and I like and respect the man. He's got a good reputation as far as I know. I'm not judging! I'm just sayin'.

If you do find that you want to gather some other medical opinions before you proceed, Dr. Charles Brantigan - Pres./St. Luke's, in Denver, is an excellent vascular surgeon who specializes in complicated TOS cases. There is also Dr. Donahue - Mass Gen'l., in Boston, who I believe is a cardiothoracic vascular surgeon (somebody please correct me if I'm wrong!), and also a top TOS specialist who takes complicated cases.

Here in Southern CA, you have the option to see Dr. Ahn - St. Johns; UCLA, in LA, who is a top TOS vascular surgeon, as well as Dr. Weaver - USC, in LA, a vascular surgeon very experienced in VTOS cases (not so much NTOS - but, as a USC doc, there'll be NO chance of running into that UCLA bias!!! haha). On the PMP/Neuro front, you could book an appointment with Dr. Jordan in Sta. Monica (just be aware, he does not take insurance, but well worth the $, in my opinion!).

Whew!! Sorry to get so long-winded on you here, kid. I am of course no doctor, not even a VTOS case like you, just have many more years of experience on the INSIDE than I would like, living with the TOS monster . You and I are very lucky in that we live in a part of the world where there is excellent care available for this funky disorder. And it IS funky (can you say "anatomic anomaly" 5 times, really fast, with a straight face?)

Really hope I haven't made you more Confucious with my verbosity! . Proceed carefully, but I feel like you will be in good hands whichever way you go. You are very hip to have the aftercare piece in mind already. That will play an important part in your return to good health, and I'm sure any PT Dr. Agnew refers you to will be TOS-savvy (hard to find, and worth their weight in gold when you do!). I wish you well and hope that you will keep posting here, as you are able, to let us know how you are doing… or, better yet, to let us know how it's done!

Take care. Oh, and a belated Happy 30th!

Alison

Last edited by Sea Pines 50; 11-22-2014 at 06:19 AM. Reason: Gen'l clean-up, reporting for duty, Sir!
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Old 11-21-2014, 07:23 PM #6
jrodefeld jrodefeld is offline
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Quote:
Originally Posted by Sea Pines 50 View Post
You have posted some very thought provoking questions. With December 4th right around the corner, I feel for you. Is there any way you would be comfortable postponing your surgery date in order to get a second (or even a third) opinion, just to increase your comfort level a bit, as well as to give you a little more time to get the answers you deserve before going into this risky procedure?

I wonder, too, about a few things in your case. First off, I notice you said that the original surgeon (was that Dr. Gelabert?) left your anterior and middle scalene muscles alone, simply taking the first rib (I think). But they would have had to have resected the scalene muscles, unless they were attached to your cervical rib and not to your first rib (as is the case in most of us), and they also left that cervie rib intact. Am I missing something here? If they did take both ribs, I know that UCLA's protocol is to cut just 25% of the scalenes in order to get that first rib out. Have the remaining portions of the scalene muscles subsequently reattached themselves to other structures, or have they behaved properly and atrophied up your neck (she asked, hopefully)?

There's a fairly recent thread on this forum about Dr. Collins, which you can pull up, if you'd like, by using the "search" function located in the upper righthand portion of your screen (just type in his name where it prompts you). I will say the reviews are a bit mixed, esp in terms of TOSers being able to get their surgeon of choice, WC judge, whatever, to take his findings into account in their TOS case. Dr. Agnew is the only one I know of (outside of the UCLA system; those docs stick together!) who will review his reports and images carefully, which is a shame considering the amount of time he so obviously puts into them…

I think it's wonderful that you have a Pain Management Physician (PMP) with a background in Neurology (Neuro), and I have heard nothing but good things about Dr. Agnew. (I thought he was retired, though. Now I'm tempted to pick up the phone and make an appointment with the man myself!) Dr. Jordan, whom you may have heard of, is also a PMP/Neuro, which is great for TOSers, I think. He's an expert on the disorder. But back to him in a moment.

I don't know how to say this next thing diplomatically, so I'll just come out with it and you can take it or leave it, OK? And you should know that my case is one of so-called "true" neurogenic TOS, which has m a y b e (just maybe!) progressed to neurovascular TOS due to a failed 1st rib resection in Denver 9 years ago, with Dr. Annest (through no fault of his own, I had an accident shortly after which compromised the results).

Anyway, I'm certainly no expert on vascular TOS. But I think your surgeon should have known to take the ENTIRE rib out, the first go-round. If I knew that as a layperson from my own piddling research back then, then s/he CERTAINLY should have known better. If the problem was one of access owing to the transaxillary approach, then they could have easily made a second incision, either sub- or supra-clavicularly, to get that sucker out! Just my opinion. But I think I would have a hard time trusting that surgeon to do the "re-do" operation. Again, I'm assuming it's Dr. Gelabert we're talking about here. I've met with Dr. G briefly and I like and respect the man. He's got a good reputation as far as I know. I'm not judging! I'm just sayin'.

If you do find that you want to gather some other medical opinions before you proceed, Dr. Charles Brantigan - Pres./St. Luke's, in Denver, is an excellent vascular surgeon who specializes in complicated TOS cases. There is also Dr. Donahue - Mass Gen'l., in Boston, who I believe is a cardiothoracic vascular surgeon (somebody please correct me if I'm wrong!), and also a top TOS specialist who takes complicated cases.

Here in Southern CA, you have the option to see Dr. Ahn - St. Johns; UCLA, in LA, who is a top TOS vascular surgeon, as well as Dr. Weaver - USC, in LA, a vascular surgeon very experienced in VTOS cases (not so much NTOS - but, as a USC doc, there'll be NO chance of running into that UCLA bias!!! haha). On the PMP/Neuro front, you could book an appointment with Dr. Jordan in Sta. Monica (just be aware, he does not take insurance, but well worth the $, in my opinion!).

Whew!! Sorry to get so long-winded on you here, kid. I am of course no doctor, not even a VTOS case like you, just have many more years of experience on the INSIDE than I would like, living with the TOS monster . You and I are very lucky in that we live in a part of the world where there is excellent care available for this funky disorder. And it IS funky (can you say "anatomic anomaly 5 times, really fast, with a straight face?)

Really hope I haven't made you more Confucious with my verbosity! . Proceed carefully, but I feel like you will be in good hands whichever way you go. You are very hip to have the aftercare piece in mind already. That will play an important part in your return to good health, and I'm sure any PT Dr. Agnew refers you to will be TOS-savvy (hard to find, and worth their weight in gold when you do!). I wish you well and hope that you will keep posting here, as you are able, to let us know how you are doing… or, better yet, to let us know how it's done!

Take care. Oh, and a belated Happy 30th!

Alison
I really appreciate this detailed response. I'm leaning towards going ahead and having the surgery. I'm just having some real concerning symptoms but I'm not sure I have much to gain by delaying it. There is clearly overwhelming evidence of TOS and even if I had some other problems going on, I probably could get anyone to address them while the TOS is such a major problem.

I have to say that I really trust Dr Agnew. If you want someone to help you with this condition there is no one I would recommend more highly. I have seen several good TOS neurologists but Dr Agnew is by far the most knowledgeable and thorough of anyone I have seen. In fact he is probably the best doctor I have ever talked to.

There are two surgeons he likes and recommends, Dr Gelabert at UCLA and a guy in Denver. He actually does not like Dr Ahn and doesn't send his patients to see him.

I like Dr Gelabert. I should clarify that he did remove some or part of the scalene muscles on my first operation. I'm not sure how much of the first rib he removed the first time. I think the main problem was the surgery was not thorough enough and the scalenes that he resected from the first rib simply reattached to structures and started causing problems again. The first time I saw Dr Gelabert I didn't see Dr Agnew or any neurologist nor did I see Dr Collins for imaging. With that said, I did have a good experience with Dr Gelabert and recovery was not hard at all.

My impression is that he has spoken to Dr Collins and Dr Agnew extensively about the imaging and he presumably has all the information he needs to do the complete and hopefully permanent procedure. The thing I am most concerned with is that I don't want this compression to return. I want those structures out of there for good.

Anyway, I'll have to see how it goes. I'll make sure that the operation is being done complete and right this time so I can be done with this problem.

Thanks for the response.
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Old 11-21-2014, 09:55 PM #7
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Not sure if the imaging would have showed any internal scarring or not.. but that does happen also and in the time frame you mention..

I am surprised the cervical ribs weren't removed first time around, just because they were there.. and they often do crowd the area.. but maybe they were small or partials and dr though not an issue..

It sounds like you have a good list of drs to work with and in your case I think surgery will be a benefit..

Often new members don't mention the drs names so we are hesitant to suggest surgery ..


The stroke like/pounding feelings could be from muscle spasms, can you get any Pain reliving tx from PT or massage to help you til surgery date?
You could be having some nerve symptoms also if scar tissue is involved..

But I would ask for PT evaluation if drs haven't addresses any muscle pain/spasms for you..
A good PT can feel those locked up muscles.. ultra sound, massage, heat, even manual trigger point work if needed..
Low level laser is really great for spot pains..

Possibly an expert chiropractor that is multi talented might be helpful also..
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Old 08-15-2015, 11:22 PM #8
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jrodefeld, hope all is well!! may I ask how your surgery went?
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