Hi Jody,
How are you doing on your recovery and getting help since you last posted?

All I can say is when a condition with virtually no proven foundation is treated this surgically aggressive and when so many are harmed by this egocentric surgical mentality, unpleasant language will develop as it should and the consequences of this unpleasant language will be profoundly adjudicated by unfortunate patients, their family, state and federal sources. It is a matter of time and I think that time is fast approaching. Thank God. Cannot come soon enough as far as I'm concerned.

Please join me on facebook. People and Professionals Against Excessive TOS Surgery for ambiguous arm pain and without proven surgical justification.

I think this condition has been so ill treated surgically for so long that I’m sure patients would have been better off in years past to have relied on some medieval doxology rather the relaying on medical scholars for pain relief after fairing the theories of the past and present. I believe that arm pain cannot be reduced to a simple 2 by 2 area called the thoracic outlet/inlet in everyone with arm pain. That’s just ridiculous thinking. It’s more than this and is not a predominantly surgical boney issue and never has been. I don’t particularly think any of this rib resection stuff is remotely good medicine in most cases. In fact, I kind of think it’s barbaric, antiquated and with all do respect to surgeons, King Henry Medicine in the 21st century. Hell I feel like Cardinal Woolsey trying to get the Vatican to agree to the Protestant Queen –yes, its’ been that hard trying to change decades old TOS mentality.

I humbly implore conservative treating healthcare practitioners to engage this patient population in a professional setting and in new articles so that alternative treatment to this excessive first rib resection mentality can begin to overshadow decades old surgeon theory that obviously hasn’t worked since Paget’s time.

I found a thread where we were talking about the pain from sitting in a chair:



Tim, I agree with you, it's not two seperate issues. Everyone here seems to have the same thing going on. It's definitely TOS-related.

This is very good. I get a second opinion on other things all of the time - before getting a new haircut, what movie to see, if my car has a problem and the mechanic tells me it needs a big repair - everything. So, why would I trust the first doctor who said I needed to have my rib taken out of my body? It's too big to not get another opinion or two!

Thanks for all the info! Really good stuff.

I hadn't read this article - but my suspicion that this might be the case is why I don't claim arterial TOS (even though that diagnosis is probably hanging around in my medical record).

I wonder if "normal" people have big fat purple arms? Big fat spider veins across their chests? LSWSM Guess I can't wish the venous TOS away...

I already know all the dangers of smoking cigs, and again sorry if this is a repost I searched and couldnt find, with ToS will smoking cigs aggrivate it, I need to stop anyways.

This is very interesting, I have trouble breathing and my medical doc had put me on an inhaler before I was diagnosed with TOS. It does seem to help me. The problem is now I don't have medical insurance so I can't get the rx renewed. So the last few days have been really bad for me. I did find an over the counter pill primatene that really doesn't do anything..lol They use to have an over the counter inhaler primatene I went to several stores and finally found it but when I opened it..it was a refill canister I didn't have the mouth piece to go with it. But I will keep looking in stores someone has to have it.

Jill:

I started the Edgelow Protocal just about one year ago. When I first started, I had intense clavicle pain, burning and the constant feeling of choking and being strangled (mmm...pleasant ). After doing his methods religiously, constantly and without fail, the use of diaphramatic breathing has lessened my symptoms in this area by 90%. Prior to this, I was just given Lidoderm patches and/or Flector patches to deal with the pain.

I spend roughly 2 hours a day on PT that revolves around breathing and another 2 hours on cardio, which is also diaphramatic breathing. Whether I am sitting in a car, watching TV, etc., I try to focus on my breath. It sounds easy enough, but learning to do it properly without tensing and relaxing certain muscles is important, otherwise you can do more harm.

Using my breath has been my most valuable tool. I also have an 'unusual" TOS case so the duration of time I spend may not be norm for results. Now, I just have to unravel the rest of the ball of yarn. sfdafda Patience....I will find patience.

Hi Jdavis,
There is a thread that has list's of medication that members take.

What types of meds do you take?


Maybe this will help with your question.
L Mod 4

Forwarding

Cindy,
Ironically, I'd stay away from hand doctors and neurosurgeons. I still have the notes from a visit with a prominent Newport Beach hand doc, who, after evaluating my worst side, with contractures, wrote something like (paraphrasing) "well, gosh, I have absolutely no idea what could be causing these symptoms". This is CODE for, "this patient clearly is faking and probably is causing the muscle wasting by not using the limb".

At the time I saw him...my Dx was RSD, but what was actually in play (looking back) was cspine (spinal cord compression) and a possible BP stretch injury, which no doubt caused overlapping symptoms (hardly my fault).

As to neurosurgeon experiences, well, after being able to generate only $2500.00:yk (due to physical symptoms) working full time, I sought the opinion of a neurosurgeon who was supposedly knowledgable and experienced in spinal conditions and surgery when needed.

Well, when I walked in with the MRI of my neck which clearly showed multiple levels of spinal cord compression, slippage of one level over the other, results of a discogram, etc. he took one look at the "clawing" and told me I needed to have his "new" procedure for moving the nerve at the elbow. He literally threw the discogram report at me, exclaiming that if I could make even $2,500.00 in income, then I didn't spine surgery.

When I showed him the electrodiagnostics that revealed nerve irritation, not at the elbow but, higher up, he threw those papers back at me. He told me that a C8/T1 neuropathy, either at the spine, or in the BP never happens (that's code for rare, I think).

He also stated that the elbow was the place to start...then he would look at "fixing" the spine. (I was sure he just said I didn't need that just seconds earlier, but hey...whatever.

So, after that second set of papers got thrown back at me...I slipped them back into my then thin folder, and got up to leave. He yelled at me that I needed his new procedure on the elbow, and that I clearly didn't understand why. When I did not respond, he continued to yell and instructed me to bring my husband to my next appt. and he would explain things to him. He seriously got up, walked up to the window where I was writing my copay check, and told the person to schedule an appt for me to come in with my husband!AS8

And I looked him in the eye and told him that my husband had even less desire to sit and listen to a stupid person try "explain" why I should operate on something that had zero evidence of being a problem. He was so mad and clearly didn't believe that my husband wouldn't want to spend half an afternoon in a waiting room (yep, I waited almost 3 hours for those few minutes of insanity).

This dude is out of Mission Viejo, and that was almost eight years ago.

Another neurosurgeon in Fullerton (recommended by a friend) was also on that band wagon of moving the nerve at the elbow even though the nerve function at the elbow was normal, due to the belief that ulnar clawing is most likely an outcome of cubital tunnel neuropathy/compression.

The next in line if not the elbow, appears to be "malingering", or "munchausen by crazy" syndrome.

I have many more stories...since falling on my head 12 years ago, but, the bottom line is that going and talking to a doc can't do any harm. It can even be educational to a degree. The key is to remember that many of these dudes might be influenced by any number of external issues when making a treatment recommendation, from patented "procedures" that they financially benefit from, to writing white papers that fluff their egos, even to financial investments in surgical centers, spinal hardware, cages, etc. all that COULD cloud their "clinical" assessment of a patients' problem. Patients need to be aware of this and appreciate how complex delivering medicine continues to be in this age of low physician compensation...buyer beware!

Although I am NOT against surgical intervention, the patient in pain HAS to resist pulling the trigger on a very complex surgery like brachial plexus decompression before securing second-opinions from a range of different "types" of specialists (from hand docs, neurosurgeons, TOS specialists, neurologists, etc). When I headed off to cspine surgery...I had utter consensus at to "need", even from a TOS doc, but, when it came to that lame arm (now, two lame arms), it was shocking to see the utter lack of knowledge and understanding of this problem (unless of course if you are a famous athlete, famous, or just plain rich).

This fact alone should make people wary. There just aren't enough peripheral nerve injury specialists that "get" the big picture, let alone advise someone who may be suffering one.

Best of luck to you!

It sounds as if it is already too late to remove the blockage.

My understanding is that you have two options at this point: Re-route the vein around the outlet (tying it into the jugular vein) or try to develop collateral veins. In my left arm (which has been blocked for 22 years), no one has suggested tying off the vein - I'm not sure I see a point to actively blocking it rather than just letting it carry whatever circulation it is capable of carrying.

Statistically, very few people get normal circulation by allowing the collateral veins to develop (I am one of the few). I'm not at the competition level in skiing - I'm reasonably athletic for a 53 year old lady. When I say I was asymptomatic for 99% of the last 22 years that includes when I am exercising heavily - it has not impacted my activity at all. I had one bout in 1998 (10 years after the initial thrombosis) when the vein had apparently opened up a little then blocked back off. When it blocked back off I had symptoms briefly and was briefly back on lovenox and coumadin. Other than that, every once in a while I notice a very slight color difference between my hands - but no one I show it to has ever been able to notice it.

As far as patching - the thinking seems to have changed a bit on that (and I haven't done new research, since it wasn't a question I needed to have answered). When my left vein was so damaged, they said they would never cut into a vein because the scarring around the seam would create new blockages - but when I mentioned that this time around (my right side), everyone has seemed mystified - so they may have better techniques for fastening veins back together.

What I did was to get my heart pumping at around 130 beats/minute for periods of at least 30 minutes a day 2x a day for the first 2 weeks (while I was hospitalized and completely blocked), then 3-5 times a week after I was out of the hospital. I don't recall how long it took to get back to normal - but the idea was to force as much of the circulation through the collateral veins as possible when the blockage was at its peak in order to created the greatest expansion of the collateral veins. (Again - you need to talk to a doctor becuase the knowledge of the risk of pulmonary embolism has changed since I developed my collateral veins. At the time, we took no special precautions - given the current knowledge that the risk is around 35%, your doctor may want to do something to minimize the risk.)

If your arm is still swollen, the time to work on it is now - once the arm gets used to being swollen, my understanding is that it decides swollen is the new normal and it is harder to return to the old normal. I don't know about a compression sleeve - I think it might have been suggested years ago, but the collateral veins developed quickly enough that it didn't seem to be of any real benefit.

I don't know where you are, but if I were in your shoes (with an already damaged vein) I'd try to get to Baylor to Dr. Urschel. His studies are the most thorough in terms of looking only at P-S, and looking at the success of a variety of procedures. From reading his articles, I get the impression that he has multiple tricks in his bag and is very good at evaluating which is the best option for a successful outcome.

I'm pretty casual about my experience 22 years ago - but I do remember how desperate I was when they were about to discharge me after 14 days in the hospital in worse shape than when I arrived, and when they re-admitted me a day or two later and the docs informed me that "all we can promise is that it will not always be this big and this purple." That got me low enough - and angry enough - to start strategizing about how to be a success story. Fortunately, I had doctors who knew nothing (none of the three involved in treatment had EVER treated P-S before), were willing to admit they knew nothing, and were willing to work with me as long as my suggestions were not totally off the wall.

I hope you find a solution that works for you! The first thing I would work on is finding someone who can help you to minimize the swelling/build collateral circulation, the sooner the better.

(By the way - even though it is standard advice, elevation doesn't really work for P-S in my experience. Elevation means putting the arm in a position that creates the tightest pinch between the first rib and collar bone. The docs would come in and tell me to elevate my arm. I would do it to humor them while they were talking to me, pull my arm down and show them how much bigger and more purple it had gotten while they were talking. The idea behind elevation is to help the blood return to the heart. It works reasonably well for DVT in other locations - but at the subclavian inlet you have both gravity and the pinch between bones to worry about - and in the case of P-S, the pinch point is a far more powerful force than gravity. Find the position that gives you the maximum blood flow (you'll be able to feel it when you find it) and keep your arm in that position as much as possible - whether or not that is in an elevated position.)

me too darlene..i was just happy to finally know what was wrong..when he said surgery..i said ok..this will fix it...wrong!!!! now i have symptoms on the opposite side and cant have it checked cause i am still fighting workers comp some 4 years later...ughhh..when does it all end???

Donny,

I'm glad you finally got some answers. Just watch out for having surgery too quickly. Dr. F has not always had good results (although I am sure she says otherwise). I know one member here who Dr. F operated on and treated quite badly when her surgery did not work for her. I would hate to see something like that happen to you (you know, so you can still marry my daughter!;))

Good luck!:lc

Jill