Hi all, this is my first time posting, but I’ve spent hours reading your posts, trying to get as much information as I can about this crazy syndrome. Looking for a little guidance here, so hopefully some of you with more experience with this can help me. I’m sorry it’s so long, just wanted to give you the background on what we’ve done so far.

My 14 year old daughter is a softball pitcher (windmill). For the past 2 years, she’s had problems with tendinitis of the inner elbow, but only when throwing overhand. She also began having issues with her wrist on the same side when throwing a certain pitch. We did PT and she stopped throwing the pitch that brought on the wrist pain. She started wearing an arm band for the elbow pain. At the end of June, at a tournament, she mentioned to us that her inner elbow was starting to hurt while she was pitching, not just throwing overhand. The very next game, she was in the middle of a pitch when her hand went totally numb. It happened when her arm was extended at its highest point of the pitch. She sat out the rest of the tournament. I figured it was just a pinched nerve but after a couple of days with no relief, I sought out help. Her trainer recommended a therapist who dealt with a lot of sports injuries. He spent an hour with her and diagnosed her with TOS. He felt that she was having compression in the pec minor area from tight muscles. We did a couple sessions of soft tissue work with him, at which point he suggested we see an orthopedist to make sure we had the right diagnosis. Saw an orthopedist who poo-poo’d the TOS diagnosis, said it was rare in kids, did an xray which showed no cervical ribs so he sent us to PT. The PT also said he doubted TOS, he thought it was a weakness in the shoulder that was causing the shoulder joint to stretch every time she threw, which pulled on the nerves causing numbness. Did 5 sessions with the PT to strengthen her shoulder, but then he said she wasn’t getting better and to see someone else. This was towards the end of July. We continued the soft tissue therapy this whole time, and I made an appt with a specialist at the Hospital for Special Surgery in NYC in their “Nerve Compression Injuries” center.

Saw the Dr. at HSS in late August. He first thought it was a brachial plexus stretch injury, but then thought it was TOS because when her posture was improved the tingling/numbness improved a little. He said to do PT with them, and nothing else, for a few weeks. Started PT there, and after 3 weeks had no improvement. This PT noted that her upper traps were very overdeveloped on her pitching side, and her posture is horrible, so she is working on slowly strengthening her lower traps to help pull her shoulders back. Towards the end of Sept. she had an EMG which was normal, and an MRI with her arm down and in abduction. The MRI showed a narrowing of the costoclavicular space (2cm with arm down, .5mm with arm up) and some “luminal narrowing” of the artery when the arm was up. Dr. was going to refer us to a vascular surgeon (Dr. Schneider at Cornell), but then said to do 6 more weeks of PT. We see him again on Nov. 3rd and I am pretty sure he’s going to refer us to Dr. Schneider.

The PT said at the end of Sept that we could start up the soft tissue work again with the other therapist, which we do once a week now. She also recommended massage which we’ve done once. In the PT’s opinion, she feels like there may be improvement because she can do a couple more reps of the wall slides before the hand goes numb, and her posture is improving. But, she also said she may be getting worse because she now loses her pulse when her arm is raised, which didn’t happen when we first started PT. It’s weird, because when you raise her arm her pulse gets really weak, when she turns her head away from the arm it disappears completely, and then when she looks back at her arm it comes back strong. The Dr. at HSS said that points to tight scalene muscles, but a chiropractor friend said it means tight pecs. And, I don’t know if this is normal, but this only happens when she’s upright. When she’s laying down, her pulse stays the same. Also, if she’s sitting up and you press on her pec area, her hand goes numb. But during her massage when she was laying down, it didn’t.

Also, since school has started, she has had a couple of acute bouts of pretty bad pain in her neck and shoulder areas, it seems to happen when she’s had to write a lot. She’s also lost strength in that hand, the good side had a grip strength of 48, the bad side 30. But, the other day when we were out walking, I noticed that instead of holding her arm at a 90 degree angle, which she’s been doing since this first started on June 28th, she had it angled a little more down, like at a 75 degree angle. She also let it dangle when she was putting on her shoes a little more than I’ve noticed her do since June, usually if she “forgets” and lets the arm hang down she immediately brings it back up to that 90 degree angle b/c it starts to feel heavy and goes numb.

She can still do her hair, text (lol), type on her laptop, use utensils, tie her shoes, etc, all without numbness. She can lean back on her hands without numbness. But if she moves her arm too fast (like running up the stairs without holding it tight to her body), she gets the tingly/numb feeling, and definitely throwing a ball makes it go tingly/numb. When the soft tissue therapist works on her, it goes numb. When she lets it hang at her side, she says it gets heavier and heavier until the hand is numb (her analogy, like she's holding a bag and someone is filling it with water). It’s always just the hand, and usually just the four fingers but occasionally her thumb. If she is standing and lets her arm down but rests it on something, like the back of a chair, it doesn’t go numb or heavy. Or if she’s squeezing something hard, like her phone, she can let her arm down without the hand going numb.

I guess my first question is, does this sound like TOS to you all? Another therapist I talked to from our church said she would not hang that diagnosis on her just yet. But what else could it be? If PT was going to help, shouldn’t we see some more concrete improvement by this point? It’s been 2 months of PT, religiously doing the exercises at home, 3 months of soft tissue work, no sports, but no real marked improvement. What should our next step be? The dr. said that referring us to a vascular surgeon doesn’t mean surgery right away, but I get the feeling he thinks that’s where we are headed. If this was me with the problem it would be different, but this is my kid, she’s got a lot of life left and I don’t want to make the wrong decision. Reading some of the surgery stories on here has scared the crap out of me, I don’t want her to have surgery and possibly trade numbness for pain. Her doc at HSS wants her to see the vascular surgeon, her primary doc wants her to see a neurosurgeon, which is the right choice?

Thanks in advance, and again, sorry this got so long.