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.

Well it sounds very familiar , but the TOS name doesn't need to be pinned on it yet as church person mentioned.
Might be best to not pin a name on it if you don't need to.. at her young age..

She was perfectly fine before this started, so I believe she can get back very close to before this happened.
It may take a year or more of very good PT , self care & chiropractic.
Maybe not that long since she is young...
It took me 2.5 years for me, but work comp/employer delays /rules etc and I was in my late 30s.

If the PTs are focusing on mainly on strengthening and generic stretching /wall slides etc..at this point , I disagree with that approach for TOS or TOS like conditions.

I suggest locating some expert multi modality /multi skilled chiropractors.

There are tons of videos on youtube about TOS and pec minor, body work..explore those for ideas too.
Alexander technique, is good for posture balance vs forced posture fixes.

Our sticky threads here have soo much info saved in them..explore those.

Slow her down on any repetitive use & poor posture esp upper body postures.
Stop aggravating activities..

Sharon Butler has a very good website & her book is in most libraries.. I found her information of fascia very fitting for my injuries. www.selfcare4rsi.com
I did use her very slow gentle stretches for a long time , but still needed chiro & expert PT for the final 'fix" so to speak.. I do still have some myofascial discomfort at times, but I am 50s+ now.

Welcome SoftballMom.

Thanks guys! Jo*mar, any opinion on Sharon Butler vs Edgelow? I read in other posts on here that Dr. Schneider requires his patients to purchase the Edgelow protocol, so I was debating on ordering that prior to even seeing him.

I am so sorry this is happening to your daughter. While her sx certainly comport with a TOS dx, I agree that you need more than just an hour spent with a therapist to confirm a dx of TOS, because it's very tricky. The sx of TOS can mimic so many other disorders (cervical spine issues, carpal- or cubital-tunnel syndrome, BP stretch injury, heck even the elbow tendinitus can and do masquerade as TOS) that you really need an expert in this.

If she were my daughter, I would book an appointment for her asap with Dr. Donahue at MGH in Boston (type in his name using the forum search function on this forum and you will see why!). Dr. D is a top TOS doc (who tend to be vascular surgeons vs. neurosurgeons) and is on the cutting edge of tx for TOS. I can't recommend Dr. Schneider based on his rep here in CA. Send me a PM if you'd like to know more…

Dr. D will do an extensive clinical examination, take her medical history, order certain tests, etc. to not only confirm whether this is TOS or not, but to find out which type of TOS is at play here. Could be vascular (arterial or venous) TOS, "disputed" neurogenic TOS, "true" neurogenic TOS, or a combination of types, and it is very important to determine which so that he can provide the right tx as well as predict how she's likely to do with TOS surgery (or if surgery is even indicated in her case).

Another likelihood is that he will recommend that she have Botox injections into her anterior scalene and pec minor muscles on the affected side. This could help to confirm the dx, predict whether she is or is not a surgical candidate, provide months of pain relief and better her chances at a successful course of PT (6 months, I think) with a TOS-savvy therapist. Hate to say this, but as Jo said if the focus of therapy so far has been on strengthening the affected muscles, that is not the correct approach at all for this! Traditional PT ("shake and bake," "no pain, no gain" therapy) not only won't help her, it could HURT her, making the ailment even worse. Hopefully, Dr. D will be able to recommend somebody closer to where you guys live to work with her. Finding the right PT can be a challenge, but they're out there.

Keep reading and asking questions, we are here to help. One thought I had is that the new PT could give Kinesio Taping a whirl, to see if that will help with her pain and other sx in the interim. Lots of other modalities to try (cold packs, moist heat, e-stim, etc.); the TOS PT will know what to do. Edgelow and Butler are both very well respected, but no reason to choose between their modalities - their distinctive approaches both have a lot to offer. It's a matter of what works for your daughter!

Well, that's it for now. Wishing you both the best of luck. We'll be here if either of you needs us.

Alison

I have a fifteen year old daughter, if she gets TOS like me, I would bring her to Dr. Donahue in Boston.

Since your daughter is a softball player, I would also consider Dr. Pearl in Texas.

If she has vascular TOS, she probably needs surgery.

Either of these docs will take a couple of months to get seen, I would call and schedule an appointment ASAP.

You can get free plane tickets through Miracle Flights and stay at a Ronald McDonald house because she is a child.

Anyway, you kid would benefit from two working arms, I promise, just bring her to the best surgeon you can manage.

Hello there,
I have two now grown kids who had rib resection surgery several years ago for TOS arm and neck pain issues. My daughters rib grew back entirely.
I also have had rib resection for TOS, all 3 of us have cervical ribs.
I have had excellent new physical therapy the past 6 months and have had much improvement in my pain levels. Look for a physical therapist who specialises in neck trauma/issues-they should be knowledgeable about TOS. ALso, anyone trained in the Butler/Moseley 'Explain Pain' or NOIgroup about how the brain affects pain cycles.
If I'd had good p.t. 5 years ago I likely would not have had surgery, and I suspect my kids may not have either.

~Robin
www.rtosjourney.blogspot.com