[Seeman]

I am recently diagnosed with bilateral arterial and neurogenic TOS. I'm not sure, but I think I have the venous form as well due to some instances of swelling. I've had symptoms since September 2011. I was very active, playing basketball and lifting weights regularly. No obvious injury to associate with the development of TOS.

Anyways, I sought medical treatment after my symptoms began. Due to a couple misdiagnosed conditions by a doctor and an unnecessary ulnar nerve decompression surgery I didn't get a proper diagnosis until last week. Testing included EMG w/ NCV, MRI of elbow, PPG, and Thoracic CT scan w/ contrast. The CT scan was done on my right arm only. The doctor is assuming the left side is identical.

The only thing abnormal he saw on the CT scan (there is no final report yet) was an enlarged subclavius muscle. He said I did not have cervical ribs.

Anyways, I'm seeing Dr. William Pearce at Northwestern Memorial Hospital in Chicago. Has anybody seen him? If so, how do you feel about him?

Also, he has asked me to try six weeks of PT. He referred me to somebody he uses regularly, but they have a two month wait list and are out-of-network with my insurance. So, instead I am scheduled for my first visit to Dynamic Physical Therapy tomorrow. Has anybody been there, or is there a place in Chicago you would recommend?

[Jomar]

I did a quick search and only one mentioned Dr Pearce of Northwestern, and they had only posted the 1 time asking about Dr Pearce.
Her son was a weightlifter & firefighter.


for the PT I hope they evaluate you at the start of every session and interact continuously during the sessions.
If they seem to have a set plan or rigid protocol and are pushing you so that sx are increasing instead of resolving, then that is not the right way to progress for those w/TOS.

Have you stopped the weights for now, to see if that helps at all?

Browse thru posts by others and the sticky threads, there is so much info to be found that way also.

If you list your most bothersome sx , maybe someone will have had the same and can share info about it.

[Seeman]

I stopped lifting weights in September. The most I've done is the occasional cardio, though it's been extremely infrequent. Unfortunately, the symptoms have just gotten worse. It makes me wonder if I should have continued some sort of modified exercise regimen.

Anyways, forgot to mention I'm male, 6', 28, 160lb. I was 180lb back when my symptoms started... I miss all that muscle

[nospam]

Due to the enlarged subclavius muscle, your costoclavicular space is likely very tightly compressed. You are likely heading for a rib resection if PT or injections cannot help (the subclavius is resected as part of the rib resection procedure). You need to find the right PT as some PT can actually make matters worse.

I had issues with my subclavius and nothing (therapy or scalene block) was able to lower the first rib and open the costoclavicular space. Have you already tried a scalene block or botox? You can get a subclavius block in addition to the scalene block. These are usually done by a neurologist with ultrasound guidance.

I would seek out a therapist with experiencing in evaluating and treating rib disfunction (subluxation, torsion, etc). If you can't find a physiotherapist that knows ribs you may have to go to a chiropractor. Get all of your ribs checked and treated, not just the 1st.

[nospam]

Originally Posted by Seeman

I stopped lifting weights in September. The most I've done is the occasional cardio, though it's been extremely infrequent. Unfortunately, the symptoms have just gotten worse. It makes me wonder if I should have continued some sort of modified exercise regimen.

Anyways, forgot to mention I'm male, 6', 28, 160lb. I was 180lb back when my symptoms started... I miss all that muscle

In my experience, avoid overusing your upper traps. Focus on exercises that isolate the mid and lower traps. Stretch your pecs...don't strengthen them as it usually worsens the situation. Keeping your core strong is a good idea.

[Seeman]

Originally Posted by nospam

Due to the enlarged subclavius muscle, your costoclavicular space is likely very tightly compressed. You are likely heading for a rib resection if PT or injections cannot help (the subclavius is resected as part of the rib resection procedure). You need to find the right PT as some PT can actually make matters worse.

I had issues with my subclavius and nothing (therapy or scalene block) was able to lower the first rib and open the costoclavicular space. Have you already tried a scalene block or botox? You can get a subclavius block in addition to the scalene block. These are usually done by a neurologist with ultrasound guidance.

I would seek out a therapist with experiencing in evaluating and treating rib disfunction (subluxation, torsion, etc). If you can't find a physiotherapist that knows ribs you may have to go to a chiropractor. Get all of your ribs checked and treated, not just the 1st.

Thanks for the info.

The CT scan did show my costoclavicular space to be very compressed with abduction of my arm. I have complete occlusion of my subclavian artery. Dr. Pearce did suggest the possibility of scalene/pec minor block if PT didn't work. No mention of a subclavius block. If six weeks PT does not show improvement, he will re-evaluate. If I had cervical ribs, I was prepared for surgery. Now that I know I don't have them, I really don't want to go under the knife.

As far as PT, the place I decided to try lists TOS among problems they treat. There are many Certified Functional Manual Therapists working there, which I'm hoping is a positive thing. I'm assuming I'll get PT that's different from the run-of-the mill stuff found at franchises. I have nothing against those places, as they have worked very well to help me recover from various injuries. This isn't one of those situations.

I'm very interested in seeing a chiropractor. I was treated for bad whiplash ~10 years ago and it was very effective. I'm going to pursue seeing a chiropractor, but I don't want to start at the same time as PT.

Oh, I forgot to list my main symptoms:

• vertigo/dizziness/blurred vision/disoriented feeling
• 4th & 5th digit numbness & tingling
• hand/arm pain
• color changes in hands (pale/very red/white spots/blotchiness)
• easily fatigued arms/hands

[Jomar]

Did the previous chiro check, or do anything for the c1, c2 or atlas /axis?
It's another area of expertise in addition to the usual chiro adjustments.

My chiro would adjust my elbows, wrists, ribs, hips when needed, even my foot when I had a case of Plantar fasciitis come up.
He also used a lot of PT type modalities low level laser, IF stim, massage /NIMMO.

Previous whiplash events can be a factor in eventually acquiring TOS. Even many many years later, it's like all the little things add up until something puts it over the edge.


Chiro was covered much better by my ins, for some reason..vs PT coverage..

[Seeman]

Originally Posted by Jo*mar

Did the previous chiro check, or do anything for the c1, c2 or atlas /axis?
It's another area of expertise in addition to the usual chiro adjustments.

My chiro would adjust my elbows, wrists, ribs, hips when needed, even my foot when I had a case of Plantar fasciitis come up.
He also used a lot of PT type modalities low level laser, IF stim, massage /NIMMO.

Previous whiplash events can be a factor in eventually acquiring TOS. Even many many years later, it's like all the little things add up until something puts it over the edge.


Chiro was covered much better by my ins, for some reason..vs PT coverage..

I know there were adjustments to my neck w/ my previous chiro, although I'm not sure about the exact adjustments that were made. My car accidents and general abuse from sports might play a role in what I'm going through, but it honestly isn't what I'm thinking about right now. Regardless, I just want to focus on getting better .

My PT appointment yesterday at Dynamic Physical Therapy went better than anticipated. The PT has manual therapy certification. My evaluation was roughly an hour, after which I had treatment for another hour. I had cervical spine adjustments as part of the treatment. She also taped my right shoulder at the end of the session, in which she emphasized not using the tape as a crutch for my posture (which I know has gotten fairly poor in the past 9 months) but as a reminder of where my posture should be; essentially, don't let the tape become taut.

I immediately had improvements in my peripheral vision, ability to focus, and my general lightheaded/dizzy feeling has disappeared. I also had some improvement in arm circulation and sensation in my arms.

I've got a great PT. I just hope Dr. Pearce agrees and approves the evaluation/treatment plan she gives him.

[Anne4tos]

Seeman: If you see no improvement in PT over a 6 week period, do not become discouraged.

IMO, 6 weeks is a very small amount of time in the TOS-PT world to make any determining factors with regards to surgery. It may have taken the 10 years since your whiplash event, plus other posture and weightlifting traumas to put you where you are today. 6-weeks will not unravel you so quickly.

Sounds like you had a good positive first appointment. That's a victory by itself!

[Jomar]

Good point, Anne.

If possible give it many months for a true try at recovery & even more if you are continuing with any aggravating activities.
Just the PT sessions are not enough you have to do the home care and be aware of uses and postures and how your body is responding.

I took me approx 2.5 yrs to get back to a mild level of this TOS thing.
Part of the time was wasted due to the work comp system & drs not even mentioning TOS or anything like it. I had multiple RSIs by this time, neck & shoulder "strains"..