What next?? :( TOS diagnostic tests
 

Continuation from the first post in the intro to TOS thread, I was in hospital for 2 weeks. I was diagnosed with TOS by my vascular surgeon and his team, and 3 individual physios. Problem is I have had:
Chest X-ray- no cervical rib or bony abnormalities
Clear MRI of brachial plexus and MRA with contrast and hands in the overheard position (after which I was in absolute agony)
A clear ct scan with contrast
Seen by a rheumatologist and he ruled out RA, lupus etc
Neurologist said my reflexes are intact
Slight slight ulnar nerve entrapment at the elbow on nerve conduction studies ( was told this was caused by leaning on my elbow, so no significance after all that)
Clear MRI of brain
Clear EMG

All the diagnostic tests like Adsons etc proved positive for aTOS??!
No mention of an elevated first rib showing on the x rays even though physio and non physios can see this from a mile away my clavicle/first rib is protruding and much higher than my other side

Got a stellate ganglion block --no pain relief after it whatsoever ..


They are still trying to think of tests they can do that will finally show something up, surely if a nerve and or artery is being compressed like they believe it is, it would have shown on the MRI/ MRA ??

I am due for another chest X-ray tomorrow, I dont know where they are going with this??
They have said because I am lying down in a relaxed position for these tests that they will be clear, especially if it is soft tissue causing the problem!

So where do I go from here?! What other tests are there?? Is my only Option ANOTHER 7 months of physio in the hope it'll 'fix itself'??

Please Some advice is badly needed if anyone has gone through this!!

Hi Laura,

I was in a similar position as yourself...my EMG, nerve conduction study, x-rays, vascular ultrasound and CT scan all showed up "normal" but I continued to have symptoms. I saw two PTs, both of whom said they could not assist me and tried Botox injections. Therefore, I ended up having surgery 6 weeks ago, and I have noticed positive effects from it.

Of course, everyone's situation and symptoms are different. I was fortunate to find a fabulous surgeon, and I decided to have surgery when I realized I didn't want to live with my crippling (literally) symptoms any longer.

I just wanted you to know that I hear you. Although many diagnostic tests came back "normal", I continued to lose strength and circulation. Is surgery something you would be willing to consider? Or would you rather try PT again to see if it provides relief?

Take care.

Laura -

Typically, TOS is diagnosed by ruling out other problems. People can still have TOS (as LadyLaura mentions) but not test positive on the various tests. My physiatrist believes that TOS is frequently underdiagnosed because doctors want something positive to confirm TOS. He bases his treatment on how the patient presents in the office rather than relying on a bunch of testing that may or may not show something. In my case, the testing has supported the TOS diagnosis both times around. Symptoms will vary person to person and this probably doesn't help the doctors accept it or believe it. In my own experience, my TOS symptoms are dramatically different between the two sides.

What area of the country are you in? You may want to consider consulting with another doctor that specializes in TOS. Another diagnostic test they can do is a scalene block. They inject anesthetic into the brachial plexus. If you experience temporary relief from the symptoms, this is considered positive.

Hi laura18,

I understand your fear and confusion. Your comment in your intro post about your arm, "my arm feels like there is an elastic band being tightened around it and it is soo discoloured and weak..i cant even close my fingers HALFWAY into a fist and it is like a block of ice.. " is similar in feeling to my arms.

I have learnt from researching on this forum, TOS reference web sites and from my surgeon, that the discouration is venous, not neurological, along with the feeling of cold, weakness and fullness (tightened somewhere) because the blood can't drain. Personally, I have minor veins taking the blood flow they were not designed for because of the blockages to my main vein. (name escapes me at the moment.)

ladylaura418 and Sheri_TOS are so right with their comments, especially about all of the tests you go through are to discount other possibilities rather than confirm.

I did not see that you have had any venography, which tracks your blood flow in real time on a monitor, not lying still in an MRI or CT machine. They should have you move your arm through a range of motions and you have contrast injected when they take an image of areas of concern.

I can recommend the venogram which is an xray looking result after the injection of an opaque substance into a vein.

Keep us posted on your progress.:)

This is a basic arteriogram/venogram. This test showed venous TOS for me (nothing arterial or neurogenic), however I find the MRI/MRA is very limited because of the positional limitations of the MRI machine. The Elevated Arm Stress Test showed symptoms of both arterial and neurogenic TOS for me.

Dr. Sam Ahn (formerly of UCLA) is a somewhat controversial vascular surgeon here in Los Angeles. He advocates fluoroscopic angiogram as the best diagnostic test. This allows for greater flexibility in arm positioning as well as a shorter amount of time for imaging (my MRI/MRA was 2:20 total and many complain of worsening symptoms having their arms raised for more than a few minutes). This is a standard test done by many practitioners to check for vascular constriction. The downside is the x-ray radiation, if that is of concern to you.

Dr. Ahn believes that most neurogenic TOS is going to accompany some vascular constriction. Once this area of constriction is identified, he uses a balloon catheter (angioplasty) to decompress this area which should give temporary relief of neurogenic symptoms as well. He uses this as a diagnostic to determine next steps: therapy, scalenectomy, rib resection, or rib resection & scalanectomy. I believe this use of the balloon angioplasty is unique to Dr. Ahn. He told me that he is trying to introduce this to the rest of the TOS practitioners. I'm sure he would be willing to speak to your doctor about it.

Another controversial surgeon (neuro) here named Aaron Filler developed MR Neurography to better image nerves. His website, www.neurography.com indicates that there is a center in London that performs this test. I would assume they also have physicians equipped to treat TOS as well.

All of this being said, each surgeon has their own tests and technique. TOS is largely a clinic diagnosis and there is no gold standard test. Most tests are used to rule out other disorders. I advise everyone to get as many opinions as possible.