Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 01-02-2015, 02:29 AM #1
Hiker Hiker is offline
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Default My experience with Edgelow protocol

Just wanted to post an update on my progress with Edgelow's exercises so far.

I started the exercises two months and saw some major improvements since then. While I cannot yet tell if these improvements will last, I am feeling much better than I did at any time in the last year.
I started feeling better within a couple of days and continue getting a little better each day.
The major improvement is in the pain level: it is down from disabling non-stop pain to occasional annoying discomfort. I went off all medications and was also able to resume some of the things I had to give up earlier. I can now do a little bit of driving, shopping, cooking, hiking, running, even some weight lifting (trying to be very careful with this though).
Cannot go back to work full time yet (working from home for a few hours a day since August).

As you may know, the Edgelow protocol is mostly built around breathing, rib mobilization and some gentle stretching.

My routine each day is:
breathing exercise 4 x 20min
walking 3 x 30 min
relaxation 2 x 40min
stretching (most major muscle groups except arms and pecs which flare me up) 4 x 10 min
plus some trigger point massage and hot showers.

All this adds up to about 5 hours a day. This may sound like a lot, but this leaves me with 10 hours of (mostly) pain free time. Much better than being in pain all day.

Now the hard part is keeping myself motivated. Pain is a very good motivator.
With less pain I need to convince myself to keep going.

Will keep you updated on the further progress.
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Old 03-02-2015, 02:38 PM #2
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It has been foour months since I started Edgelow and an update is due.

I am doing the exercises diligently every day and continue to improve slowly.
At this point I am down to 3.5 hours of exercise a day (with 5 hours a day I barely had time to eat).
This gives me time to return to some of my old hobbies and I can also read books and work on
the computer a few hours a day. I am also now working in the office two times per week.

For cardio workout I resumed running regularly and am training for a 5K race (don't think I can manage more than 5K).
Arm and upper back strength has improved a lot. Last summer I could barely lift 5lbs. Now I can curl 20lb dumbbels no problem.
Still cannot tolerate arm and pec minor stretches very well, but at least I can do very gentle stretches which
don't flare me up anymore.

As far as the pain goes, I am mostly pain free as long as I don't skip the breathing exercises and
don't spend too much time on the computer, but I have a permanent achy discomfort in my shoulders and arms.
The sore places move around a lot (neck, elbows, wrists, upper back, chest and so on) which I find much easier
to tolerate than non-stop pain in the same place.
If I overdo things or forget to do the breathing, the discomfort quickly goes from annoying to painful.
I then have to take it easy for a couple of days.

The progress seems to be slowing down. Don't know if I am approaching the plateau.
I was hoping to be back to full-time in the office by April, but I clearly will need a lot more time to recover.
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Old 03-16-2015, 10:30 PM #3
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Had a bit of a flare-up last week: did too much computer typing at work. Was in pain for several days. I think I am over it now.

Ran the 5K race yesterday. Came 8th (out of 500 or so). Not too bad, but not anywhere near my personal best time.
Today I am feeling good, but my left hand is numb. I suppose this means I need to take a break from running. Sigh.
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Old 06-25-2015, 03:53 PM #4
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An update after eight months.
I am doing OK, continue to improve slowly.
All symptoms in arms (pain and numbness) went away, but still have a lot of achiness in neck and shoulders.
I think neck pain is mostly myofascial and exercises don't seem to do much for it.
Shoulders are diifferent. When I have pain (usually when I overdo it on the computer), it is more intense and disabling. I also have muscle atrophy in the trapezius which I suppose means nerve damage (although not all Drs agree - they can't agree on anything).
Anyway, I still do Edgelow's breathing exercises 3-4 times daily. I think other exercises of his are less helpful so I am gradually replacing them with strengthening exercises (crunches, prone cobras, bridges, weights etc).
I found strengthening to only helpful when the pain is gone. They were only making pain worse when I was in bad pain.

Even though I am feeling much better, I am clearly not ready to go back to work in the office full time
I usually only show up once a week or so for half a day.

Will keep you updated on the progress.
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Old 08-03-2015, 07:03 AM #5
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Is your pain in both shoulders or just one?
Also, do you have any coexisting neck issues eg disc bulges etc.

I am trying Edgelows protocol but hitting a brick wall in that I seem to be activating my scalenes and not the deep neck flexors. Frustrating.
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Old 08-03-2015, 09:56 AM #6
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My pain is bi-lateral. Right is worse than the left.
I had neck pains and associated headaches for 10-15 years though there is nothing in the neck that shows on tests. No stenosis or herniated disc.
I suppose that all my symptoms can be explained by muscle spasms somewhere in the neck. Depending on which muscles spasm, I get pain in different places.

At this point most of my pain in the shoulders and arms is gone (unless I do too much computer work). However, occipital pain is not. Edgelow does not seem to help with that. Various neck stretches are helping a bit.

I don't think I have a problem with scalenes substituting for the deep neck flexors. My scalene problems are mostly from improper breathing. Training myself to breathe properly unloaded the scalenes and helped the nerves start healing.
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Old 12-31-2018, 12:15 PM #7
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A quick four year update.
Was doing pretty good with full-time computer work, although no improvement from a year ago.
Last month started a new job. Longer hours, longer commute, more stress.
Having a relapse now. Not nearly as bad as four years ago. Back to Edgelow exercises trying to bring it under control...
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Old 04-23-2019, 12:27 PM #8
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Hi hiker,

I don't expect to see you again for another 8 months or so.. but maybe my reply will bring you back. Seems the things that aggravated you are the things the really set my TOS off in the first place. As of now I am doing lots of exercising, focusing on belly breathing during the day, trying to sleep on my back. Lots of stretching, and I still see a PT that does manual therapy, dry needling, etc.

Like you, I have ups and downs but have definitely seen overall improvement since beginning. Posture is much better, pain seems to be manageable most of the time. Still dealing with a lot of tightness in pec minor, scalenes and pain in trap area even though they aren't necessarily tight. Could be posterior scalene though as well. SCM is tight often but I find that one to be easy to self massage because the muscle itself is so obvious.

Hope you are still out there and look forward to your next update.
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Old 03-27-2021, 06:36 PM #9
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Default Update

Hi, I have a recent diagnosis of TOS after a lot of time with symptoms. Not sure if it is going to happen, but I would be glad to know about Hiker's health condition.

Hope you are all ok with TOS symptoms.
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