Post For Rissy - Thoracic Outlet Syndromwe

[louloutinks]

Hi Rissy,

just thought I would let you know that you left an answer in a thread for me re different BP in arms and you said to consider subclavian steal or thoracic outlet...went to London Hosp and it is thoracic outlet syndrome so you were right! So thanks coming your way for information as I mentioned it because of what you said and they did a few tests and said it was that.

I am having physio for my neck, joints and now that - does anyone on here have this thoracic outlet and know anything about it please?

Many thanks

[HopeSprings]

I am certain I have thoracic outlet syndrome in my left arm, but it's another one of those difficult conditions to find a Doctor who knows about it or to get help for. If I remember correctly I was diagnosed with this, based on loss of pulse when I turned my head a certain way? Diagnosis brought no help however. I think it also depends on what is causing it - either nerve or blood vessel entrapment. If you raise your arms above your head, does one of your hands turn white? Can I ask what tests they did to diagnose it?

[louloutinks]

Hi Naomi

Are you in the UK?

I just an appointment up London, after recievnign the results of an MRI that had minimal bone spurring and hypertrophied somethnig or other that would not be casuing all my symptoms.

I mentioned what rissy had said and they did a few things but do not know what thye are called. Holding hands together whilst up and then the backs of hands together, holding hands in the air and opening and closing them. This was so painful and made both my hands go numb but especially teh left side of my left arm. Holding arms up with neck turned to side.Pushing on certain parts of my back,chest and shoulders - which really hurt - just under collarbone, on shoulder near neck and by shoulder blade wree very painful. 10 movements of head up, 10 of down, 10 to left, 10 to right.Erm cant remebmer any more!

However they did say that the tests are not 'definitive' but I have to go back in 2 weeks for physio.And then on to see a doc at the end of June.

One thing I have noticed is that the veins in my left arm are sunken and I have dents in my arm too. I am not sure wether this is related. I also get different BP's in each arm - like 131/100 in one and 107/82 in the other.

What symptoms haev you been getting?

I haev read that it can be neurogenic and vascular either or kind of thing.

[louloutinks]

Oh meant to say BP difference and sunken viens were vascular issues.

Oh GOSH I just noticed my terrible typing - having a mixed up letters night I think lol

[HopeSprings]

Tinks, I'm in the U.S. My main symptom is weakness of the left arm and hand - and I have a hard time doing any activitiy that requires me to raise my arm - like shampooing my hair for example. My arm and shoulder start to ache and burn immediately. There are many other symptoms that can be caused by TOS including dizziness, chest pain and tinnitus. I have those symptoms and thought maybe TOS could explain some of that. I saw a neurologist and told her about my white hand and she sent me for an MRA of the chest (the aortic arch). It showed stenosis of the subclavian artery - thought I had my answer... but then the radiologist changed his mind and said he thought my artery was normal and it may have been "artifact" on the MRA and suggested I follow up with an angiogram. I followed up with a vascular surgeon who did a few tests and decided I was ok. Yeah, but then why is my arm so weak and why does that hand turn white??? This is the story of my life.

Now your differences in BP between arms sounds more like Subclavian Steel. I hadn't heard that TOS could cause this (maybe it does). I hope the Dr. you saw checked your BP in both arms? Maybe you should get an MRA to see what's going on with your veins and arteries in that area? If I were you I would want to make sure Subclavian Steel is ruled out and look up every single thing that can cause Thoracic Outlet Syndrome (there are several) and get each of those things checked out. Don't ya love how it's up to us to guide Doctors through the process. Hope they're better in the UK. Sigh...

[Darlene]

I went to a rheumatologist, and was diagnosed with: fibromyalgia, thoracic outlet syndrome and chronic fatigue syndrome. She told me to go to

http://www.arthritis.org and learn all I can. I have muscle weakness in both arms, it's uncomfortable to even wash my hair sometimes.

[louloutinks]

Hi Naomi, I saw a top physio re this not a doc but because I am seeing a Doc in London (at the same hosp) about all my issues he said to tell him about the BP and the veins. He first told me to see my local doc- which I will not as they are useless then I told him about the UCLH doc. He didn't say it was caused by TOS but that it was a vascular thing.

NOt sure how the health system works in the US so am of no help for you there! Are your symptoms constant as my are daily but intermittent. I usually have some form of numbness in my left hand/wrist daily, headaches usually daily, vertigo, few times weekly, ear problems often etc

I get vertigo, nausea, painful ears, vibration in my ears too, chronic headaches, neck, shoulder pain etc. My left arm is weak too - this all started after I went to the gym once and I couldn't even pick up the lightest weight. The only thing that I had before this was the sunken veins. I am finding that I cannot even move things around my home like the other day I went to move a portable telly and was so weak I couldn't help but laugh.

Maybe the London doc will look into the BP part of it for me - what worries me is my veins that sink in - if I hold my arm up or level the veins dip inwards in my forearm. There is also a dent in my muscle like someone has pushed there thumb in it.

One thing I did not understand is during one test (when I had to hold my hands in the air and open/close my palms) why did the other hand go numb first. I never have problems in that hand - I can't have TOS both sides or can you!

Have you got TOS in both sides Northerndarlene or is the both side weakness due to one side.

I am seeing them soon and will have to go armed with my questions written on paper else I will forget!.

Thank you for the link Northerndarlene I will check that out.