[LiveLoveandTrust]

Went in for a doppler test today. I'm positive in my left arm (worse side) for both venous and arterial TOS and may be positive in my right for minor arterial but they said it could just be a normal amount of compression. I have neurogenic symptoms in both arms but there's no real good test for that, but it can be assumed that's going on too. The findings completely corroborated what I've been describing! I see Dr. Lowe on Friday and I can expect a surgery date soon after. The tech. said he usually doesn't like to wait very long with arterial TOS.
I'm over the moon. They're sure now that's what's going on and they've actually done some real testing. Finally, a confirmed diagnosis with proof! Guess what, guys? I'm not crazy! This really is real!

[rebelette]

I also have Thoracic outlete syndrome. I was told that i have the neurogenic type. I was injured on the job in 1996 and wasnt diagnosed until I did so much research on the internet and finally found a doctor who agreed with my own diagnoses. First the situation was that I had bilateral carpel tunnel and my right hand had surgery right away from all the jolt sensations I had whenever I extended my right forearm.

I was still having upper extremity weakness in both arms along with pain, feeling of swellingness in both of my underarm areas, tightness like a band or a blood pressure cuff whenever i would use my arms, what feels like a tingeling sensation in my left scapula blade area and pain between both shoulder blades and many muscle spasms over the years.

I am still scared and unsure if anything can be done for my situation because my doctor says that my type of thoracic outlet is a true neurogenic one and there is no cure only weight loss and strengthening of the muscles.
The symptoms that I experience on a daily basis scare me because I dont know if there is any new pain is it all related to the thoracic or could it be something else. Sometimes I hate talking to my doctor because I am always asking him to see if any new tests have come out to better understand my situation.

You mentioned a doppler test and I was wondering what that is exactly, I might have had one but i'm not sure. I have gone for emg testing and nerve conduction vilocity testing over the years but that doesnt show anything. Now I am starting to wonder if I could have one of the other types of thoracic outlete syndromes. But anyway, I hope your surgery goes well and I hope to find an end to my own nightmare soon!!

[Eddiemaverick]

Hi Reblette,

You must read on through these forums, as what your doctor says seems to contradict what many of us are aware of. You really need to start with a TOS specialist as many doctors know of the condition but don't know it well. There are threads on this board that indicate different doctors in different areas.

Just so you know, many tests for TOS are not conclusive. Many of us had gone through 5-6 doctors before we found the doctors who truly know the syndrome. If you are in the Northeast, Dr. Donahue at Mass General is one of the best discussed on this thread, and I can't say enough positive about him.

[mspennyloafer]

rebelette, i think the blood pressure cuff feeling in the under arm

i get this REALLY bad

is pec minor

[nospam]

Originally Posted by mspennyloafer

rebelette, i think the blood pressure cuff feeling in the under arm....is pec minor

I'd have to agree.

[LiveLoveandTrust]

Originally Posted by rebelette

I also have Thoracic outlete syndrome. I was told that i have the neurogenic type. I was injured on the job in 1996 and wasnt diagnosed until I did so much research on the internet and finally found a doctor who agreed with my own diagnoses. First the situation was that I had bilateral carpel tunnel and my right hand had surgery right away from all the jolt sensations I had whenever I extended my right forearm.

I was still having upper extremity weakness in both arms along with pain, feeling of swellingness in both of my underarm areas, tightness like a band or a blood pressure cuff whenever i would use my arms, what feels like a tingeling sensation in my left scapula blade area and pain between both shoulder blades and many muscle spasms over the years.

I am still scared and unsure if anything can be done for my situation because my doctor says that my type of thoracic outlet is a true neurogenic one and there is no cure only weight loss and strengthening of the muscles.
The symptoms that I experience on a daily basis scare me because I dont know if there is any new pain is it all related to the thoracic or could it be something else. Sometimes I hate talking to my doctor because I am always asking him to see if any new tests have come out to better understand my situation.

You mentioned a doppler test and I was wondering what that is exactly, I might have had one but i'm not sure. I have gone for emg testing and nerve conduction vilocity testing over the years but that doesnt show anything. Now I am starting to wonder if I could have one of the other types of thoracic outlete syndromes. But anyway, I hope your surgery goes well and I hope to find an end to my own nightmare soon!!

Rebelette, a Doppler test is an ultrasound of the artery and vein in the thoracic outlet. They have you move your arm in different provocative ways to see if they can see the vein or artery constrict. If they see this consistently, they diagnose vascular thoracic outlet syndrome. There is no real solid way to diagnose disputed neurogenic TOS. They do the best they can by doing provocative testing and perhaps a scalene or pec minor block because when they do those blocks if your symptoms disappear than it's indicative that there is some compression of the nerve going on in there. True neurogenic TOS is an easy diagnosis because the only real difference between disputed and true neurogenic is wasting of the fat pad at the base of your thumb. It's quite noticeable. From what I understand, when you are diagnosed with arterial, true neurogenic or moderate-severe venous TOS you pretty much need surgery at that point though not everyone has the same experience. Physical therapy is always tried first unless there is a medical concern that needs to be addressed. For example, until they found out that I had arterial involvement, I had been sent to many rounds of PT. Now that they found that the artery is being constricted they ideally want surgery within a week of me seeing the doctor on Friday.
I wish you the best of luck!!

[jkl626]

Originally Posted by LiveLoveandTrust

Rebelette, a Doppler test is an ultrasound of the artery and vein in the thoracic outlet. They have you move your arm in different provocative ways to see if they can see the vein or artery constrict. If they see this consistently, they diagnose vascular thoracic outlet syndrome. There is no real solid way to diagnose disputed neurogenic TOS. They do the best they can by doing provocative testing and perhaps a scalene or pec minor block because when they do those blocks if your symptoms disappear than it's indicative that there is some compression of the nerve going on in there. True neurogenic TOS is an easy diagnosis because the only real difference between disputed and true neurogenic is wasting of the fat pad at the base of your thumb. It's quite noticeable. From what I understand, when you are diagnosed with arterial, true neurogenic or moderate-severe venous TOS you pretty much need surgery at that point though not everyone has the same experience. Physical therapy is always tried first unless there is a medical concern that needs to be addressed. For example, until they found out that I had arterial involvement, I had been sent to many rounds of PT. Now that they found that the artery is being constricted they ideally want surgery within a week of me seeing the doctor on Friday.
I wish you the best of luck!!

Hi LLT, Ive never heard of the wasting away of the fat pad at thumb. I think I may have that,although not conclusive, I definatly have a smaller one on the affected side.
Where did you hear that and are there articles on it? I thought I just had disputed TOS but maybe I have the True type. i thought True was when you had a cervical rib. its amazing how much you can read and still not know things. Thanks,JKL

[LiveLoveandTrust]

Originally Posted by jkl626

Hi LLT, Ive never heard of the wasting away of the fat pad at thumb. I think I may have that,although not conclusive, I definatly have a smaller one on the affected side.
Where did you hear that and are there articles on it? I thought I just had disputed TOS but maybe I have the True type. i thought True was when you had a cervical rib. its amazing how much you can read and still not know things. Thanks,JKL

I've seen it on a bunch of different articles, most recently in the video posted somewhere in the forums here of Dr. Donahue speaking on TOS and treating disputed neurogenic TOS in particular. If you have a cervical rib, you often have arterial thoracic outlet syndrome. Arterial and venous TOS are different from neurogenic TOS because they can often be conclusively diagnosed and cause different problems. True neurogenic can also be diagnosed relatively easily because of the wasting affect. Disputed is more difficult because, often, all the doctors have to go on is your account of what's going on and a bunch of vague symptomology. For example, I do not have an extra cervical rib but I do have arterial and, to a lesser extent, venous TOS. In this case, there is no "true" or "disputed" because it is vascular. An extra cervical rib usually causes vascular symptoms. :-) Hope that helps!

[irisheyesmilin]

Originally Posted by rebelette

I also have Thoracic outlete syndrome. I was told that i have the neurogenic type. I was injured on the job in 1996 and wasnt diagnosed until I did so much research on the internet and finally found a doctor who agreed with my own diagnoses. First the situation was that I had bilateral carpel tunnel and my right hand had surgery right away from all the jolt sensations I had whenever I extended my right forearm.

I was still having upper extremity weakness in both arms along with pain, feeling of swellingness in both of my underarm areas, tightness like a band or a blood pressure cuff whenever i would use my arms, what feels like a tingeling sensation in my left scapula blade area and pain between both shoulder blades and many muscle spasms over the years.

I am still scared and unsure if anything can be done for my situation because my doctor says that my type of thoracic outlet is a true neurogenic one and there is no cure only weight loss and strengthening of the muscles.
The symptoms that I experience on a daily basis scare me because I dont know if there is any new pain is it all related to the thoracic or could it be something else. Sometimes I hate talking to my doctor because I am always asking him to see if any new tests have come out to better understand my situation.

You mentioned a doppler test and I was wondering what that is exactly, I might have had one but i'm not sure. I have gone for emg testing and nerve conduction vilocity testing over the years but that doesnt show anything. Now I am starting to wonder if I could have one of the other types of thoracic outlete syndromes. But anyway, I hope your surgery goes well and I hope to find an end to my own nightmare soon!!

Rebellette,

Hello, I'm irisheyesmilin. Where do you live? I am from Southern NH about an hour from Boston's Mass Gen. Hospital. Dr. Dean Michael Donahue is who I have seen. I am seriously considering him to do my surgery. When your dr. speaks of weight it's interesting. I asked Dr. D. about my weight and if he felt
I should loose weight. He said, "I can't ask anyone to loose weight, that's not my business. I can say it would be easier in the sense that when I cut it would be less to cut to find what I'm looking for, ie: nerves etc. He is very empathetic, kind and a good listener. I have had tos for 42 years.