[fern]

Has anyone had this? I've been walking more as opposed to water exercise (w/ my arms are solely supported by the water). Now I walk on land with my TOS arm supported by a fanny pack or belt. But I have been trying to "train" my arm to hang down naturally for bits of time while I walk even though it pulls at the BP. My TOS is primarily neuro with some vascular component but maybe more than I realized. I walked further a few days ago only to look down and see my fore-arm and hand swollen to almost twice their size! The arm became kind of painful and I stopped and rested with my arm a bit propped up. It was 90 mins before the swelling went down enough to comfortably drive home. I had lots of pins & needles as the swelling decreased and then some discomfort around the upper arm that lasted the following day. I had a v. short walk today and stopped before much of any swelling occured. I want to be become as "aerobically fit" and am not sure how I can get the cardio and weight bearing exercise my body needs. At least I know I can take short walks sev. times a day to keep the pain & swelling down. Any other ideas? Is it unsafe to have such swelling like that? Should I have gone straight to the ER? It seemed a no brainer to prop my arm up and to avoid this self-caused situation in the future.

[JAMY]

I have/had this as well...I used to go to a gym (way before surgery days) and after 15 mins on the treadmill my arm would swell, if I went shopping my arm swelled...I notice it now but not nearly as bad. I mentioned it to my PT (at the time) who didn't seem too alarmed...sorry I can't offer any more advice but know you are not alone.

[DiMarie]

I can think of a few things.
Even though you do not have vascular...when the arm goes up loss of paulse (but most of society can have this alone)....or you do not have arterial TOS with clots....But, the vasscular bundles along with the nerves from the brachial plexus travel through the thoracic outlet. a tiny opening between the front of the first rib adn behind the collar bone. So if nerves are compressed and tight fit, so would the vascular be compressed during activities.

The blood goes down my arm to hand, but the compression part is coming back out. It does not come out as well and I swell and mottle hands, rings have been resized two full sizes too,

ANother thing, is lymph glands, being congested, could they be causing swelling.

I found the best activity is a tredmill with a rail my arms are on wrapped in foam, aquatic walking in the pool with my arms supported in a foam board. Doing laps Walking in the pool!!! After I am done, I hang on noodles in the 6 foot part and let gravity stretch my body out and relax everything. When I am done I have a great massage.

Hope you can find relief.
di

[noname]

1. For reasons I'm not sure about, I tend to swell more if I walk outside vs. inside on a treadmill.
2. check posture. Perhaps stand more upright, shoulders back. Try to maintain that more. Check head position, no forward head.
3. If raising your arms doesn't result in a flare up...everyonce in awhile, raise your arms up to increase blood flow against the gravity of the arms being down. The swelling is common but not normal.
4. If you can, pack some ice in your fanny pack or back pack and try applying it as you notice the arms swelling, this may help to reduce or prevent the swelling.

[gibbrn]

hi,
not sure if you have dx vascular tos, but if you hve swelling with it during walking it is due to compression of the vessels and you should try to be very careful as you could cause a clot or damage to your vessels or your nerves if they too are compressed in the bundle.

This swelling is not good as it will do more damage. rest and elevation are good. And STOP the activity causing the problem until you are worked up by a DOCTOR. I am worred....this is what happened to me pre surgery and I could not feel my hand or my arm if I walked for over 10 min....now less, but if I go on a walk on treadmill, (like hard pavement) then my face goes numb and so does my ear and arm and hand and swells up....if you get to the point whre you are able to tolerate ice find, but I find Ice is the worst thing for my tos as it causes more flares and makes things much worse....I had to wait up to an hour for the swelling to go down....

ER for this is likely not a good idea as they don't usually even know what tos is...lol .....so try to relax and let it go down....hold off on the activity until you speak to your main doc treating your tos and yes perhaps you need a veinogram to see if you have more occlusion than you think.....it could be pooling blood, lymph swelling or a multitude of other issues.....so get it checked by your main tos doc....

best of luck....it sucks I know, but hold in there!!!!

That kind of swelling could cause compression in other areas....so your hand may feel worse than normal...but don't do it till you are worked up again...
love and hugs,
Victoria

[fern]

Thanks all. Mine is the Neopolitan style of TOS--neuro, vascular, & lymph--but primarily neuro. So I wasn't sure what the swelling was due to. And I didn't know if the swelling is simply annoying or dangerous. So for now I will go back to short walks outside w. my arms supported by the fanny pack and pool walking. this is so frustrating...I want to feel like I can be outside enjoying the beauty of the world vs. having my arms hang over a treadmill bar or on the surface of the pool. Silly that I thought I could "train" my arms to use the fanny pack less. My arm, bp, & neck are more flared than usual 3 days later so I will make an appt to go see a new doctor. So far I have found only a surgeon that treats TOS. He does some special ultrasound. I can't imagine having yet another test ... has anyone found an ultrasound valuable?

[gibbrn]

Hi,
I found that the ultrasound results shocked all people involved in my case!!.....it showed 100% compression in my right side and 50 in the left......

so in answer to your question it is helpful! They do put you in provocative positions in the 90 degree pos. for your arms up and at 90, and other out to the side and then turn you head the other way.

They are looking for compressed blood flow....so go for it!!!! It will only help clarify matters. I had this then went on to the veinogram to get absolute proof before I had even considered a surgery!!! I had to have it as I had almost 90% occlusion of my brachial cephalic vein....not good!!!!

so yes it is a good idea
take care
love and hugs,
Victoria

ps love the neopolitan reference...!!!!!!!!!!!!!!!

[johannakat]

noname- if on a treadmill you are resting your arms on the rail and if outside yuo are dangling/swinging youre arms, that is probably enough of a difference right there.


I do think that for some, if you can engage your shoulder blades before swinging your arms (so your are sort of pulling your shoulders up and back a bit rather than letting them hang loose) it will reduce the trendency to swell.

One of the PT's i stopped seeing for other reasons gave me that shoulder blade advice the first day i saw him (it was enough to get me to come back, but he proved not to be very sensitive to us painned types and I eventually left him a few flares later) . He proved it by lifting up on my elbow while i tried to look side to side, and without the shoulders pulling down i could move farther. He said it was because my traps were overstretched (as opposed to too tight which is what i had thought they were).

I am not sure this explanation is correct, but it does help the pain in my arms when I walk or lift things or do exercises if i engage the shoulders first-

so there you have it

As for ultrasounds, well, Dr Jordan does an ultrasound and sees almost the same thing as Dr Collins 12,000 MRI/MRA but the ultrasound costs $390. Generally they are simple and painless- i don't know how you could go too wrong.

GOod luck, adn you are probably right to investigate the source of the sweilling- some can be a sign of very bad things, other i think is more just annoying.

Johanna

[fern]

I'm noticing more swelling than usual even with a shorter walk today and also more pain in the arm and then leftover after my walk so I made an appt to see a doc does the ultrasound. The office said they are first looking for clots and that they could tell if the swelling is artery, vein or lynph. It would seem odd to have a clot after 4 yrs of TOS wouldn't it? I doubt that that is the problem. In the meantime I will keep my arm activities to a minimum until it is checked out.

I can't help but wonder why Dr Sanders or some of the other well known TOS surgeons don't rely more on an ultrasound if can see so much and for such a relatively low price in comparision to the 3D MRA. I've had that and also the the scalene and pec minor blocks. Does Dr Jordan do add'l testing once the ultrasound is performed?

I feel very relieved to have the support of the group. thank you all.

[olecyn]

cardio, heat and just plain ole function all causes swelling and throbbing for me.