Diagnosed w/ bilateral ATOS in Chicago, need PT
 

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?

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.

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 :mad:

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.

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.

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

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.

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!

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"..:rolleyes:

update
 

Well, after three weeks of PT I'm personally of the opinion that I definitely won't be needing surgery. While I recognize I may very well have a long road ahead of me to get back to lifting weights, I've seen such a dramatic improvement in my condition that I can quite easily tolerate the condition I'm currently in. While I've never been treated for this condition before, I've been to several different physical therapists for other things, and I never would have imagined improving at the rate I have.

I still have symptoms: dull/aching pain throughout my arm at different points in the day, decreasing sensation if I'm not careful with what I do, nerve tension, and some swelling and/or lack of circulation if I overexert myself.

That being said, what I don't have anymore is what's really promising: vertigo, vision loss, blurred vision, lightheaded, permanent loss of sensation in fingers, constant impairing pain, having extremely cold hands, hand swelling, and just the struggle make it through every day.

All I can say is I wish I found this PT 9 months ago, and that I didn't have an ulnar nerve decompression surgery that wasn't necessary. Regardless, I'm very happy to be improving steadily, even if I do have setback some days...

I too live in Chicago, 32yrs old and suffer from TOS. Similarly I was an active weight lifter until this condition stopped me. I am currently seeing Dr. Pierce and start my 6 week PT treatment on Wed. I would greatly appreciate speaking to you if you are willing, if so please send me a PM request.

I sent you a PM. Feel free to contact me. It's nice to see there's somebody else in Chicago seeing Dr. Pearce.

OK, well it's been about 3 months since my last post and I thought I'd put an update up. I want to also apologize for the long post that is to follow:

I had my first follow-up with Dr. Pearce on 07/11/12. Upon him asking how things were, I responded with how my condition had improved; My vertigo/nausea was all but completely resolved and I had made some pretty big steps in regards to my strength from a postural standpoint. I still had issues with exertion, which included reaching, holding even a couple pounds at my side, and wearing a backpack with any weight in it, etc. Those things still caused numbness, swelling and/or loss of circulation in my arm. What irked me about Dr. Pearce is that his response to my statements was "you very well may be stuck with symptoms for the rest of your life, you have a long neck." Of course, he followed up by saying he was very satisfied with my progress and that he was going to make sure everything was taken care of so I could continue PT uninterrupted to maximize progress. If you ask me, his bedside manner needs quite a bit of work and he does not appear to take the level of interest I expect of my doctor.

Now, while I was pleased with my progress at that point, I was anything but satisfied. To me, nothing short of getting back to the weight-room and being able to get out onto a basketball court would satisfy me. Regardless of what realistic outcomes a person SHOULD expect, there's nothing wrong with setting your ultimate goals as high as possible. I need that as motivation to both fight through the frustrating days where you feel you haven't gotten anywhere as well as mentally push myself to do even better when I have a good day.

Anyways, when I showed up for my 2nd PT visit after my follow-up with Dr. Pearce, I found out my insurance had cancelled my PT. 10 visits total, and I was done according to them. That was SO disappointing, and resulted in my not going to PT for a month. In that time my condition started to deteriorate again.

Anyways, through some clever maneuvering on my part I was able to get back to physical therapy. Unhappy with how things worked out with my insurance, the therapy company and Dr. Pearce, I chose to go to a PT I had seen a couple years back for a shoulder injury. The current series of PT sessions started 08/30/12 and are ongoing as I type this.

This PT has taken an approach more around strengthening my muscles. Things started VERY carefully, with a focus on relearning how to complete specific motions while activating the correct muscles. Things as simple as raising my arm out in front of my body were being accomplished completely wrong by my body. At first, some of my exercises were done with pressure on specific muscle groups so I could tell if I was activating the right muscles. It's a very strange feeling to realize just how improperly movements are being accomplished by your body.

Anyways, I'm down to one day a week physical therapy. I can clean, put sheets on my bed, carry weight in my arms, wear a backpack, reach for a plate, and generally make it through the typical day without EXPECTING problems. It still happens, but I don't anticipate it anymore. Most importantly, I've been able to start running again. I've recently logged runs as long as almost five miles without having any issues. I always hated running just to run, but lately it has been an absolute joy. Push-ups, though very carefully, have also started to creep into my routine based on how my exercise routine is going. My PT regimen gets tougher every week, and I love it.

That being said, I still have problems with some movements. I'm not cured, but I am getting better everyday. When I started PT 08/30/12, I said to the PT that nothing would make me happier than being able to go to the gym. Furthermore, if I was able to do so before the end of the year I would be ecstatic. Well, I'm no that far off from walking through a gym door.

Hey Seeman!

I'm also in Chicago and have been referred to some of the same folks by my Physiologist. Would you mind if we chatted or emailed off the thread. I can tell you some success I've had with a PT who is a no BS type of guy who will give it to you straight.

Thanks so much!

Will send a PM