[Prudence]

My daughter was diagnosed with TOC by a well regarded TOC specialist. Today the TOC PT team leader sadly told us that PT will not help her. I'm very distressed.

My daughter landed in the ER in January with severe pain from her neck to her finger tips, tingling, swelling and blueness in her hand. After seeing a shoulder specialist several times and having 2 months of PT, she was finally diagnosed with TOC in March. The PT she was seeing suspected TOC and was treating her as if that is what she had. The shoulder specialist agreed TOC was likely and then we found the doc she has now.

She has both vascular and neurogenic TOC. Her doc believes it was caused by an injury about 18 months ago. That injury seemed to resolve but she has had increasingly severe and seemingly unrelated symptoms for the past year (mostly back and neck pain, the back pain being severe). Reaching up to hug a friend landed her in the ER in January. She was laid out on the floor from pain, her hand ballooned up, became numb and turned dark blue. This now happens to varying degrees on a daily basis. On the really bad days, she can't hold a pencil to take notes in class (and she's a great student). It's heartbreaking. The muscle relaxers and NSAID don't seem to help her at all.

We are going back to see her doc ASAP (appt is end of April but I'm going to try to move it closer). He was hoping conservative therapy would work but has already gone over the surgery with us. It's the full monty - removal of the 1st rib and the muscles. She is a tiny girl of 14, with a lot of growing left to do, and it just seems very radical for a growing body.

I've been doing additional research tonight and it's hard to find much on pediatric TOC. Are there any other non-surgical options that are successful in children? What about scalene steroid injections? Is there anything else? I want to go to the next appointment with some educated questions/suggestions so we can exhaust all non-surgical options.

I am not anxious to agree to surgery, and in fact will take her to another state to see a pediatric TOC specialist before I do that (considering a doc in Columbus, OH or another in Charlottesville, VA. We are in Louisville, KY). She has already said she will not agree to surgery, and I don't think I would force it on her even if I could. She'd have to be convinced it is what she needs, and quite frankly, so would I. But the option of living with this pain and limited use of her dominant hand and arm is just so very grim. She's so young and this is taking a huge toll on her both physically and emotionally. On me, too...

Thanks in advance for any information you can point me to, or any personal experiences you can share.

[Jomar]

I will tell you that the vascular TOS surgeries seem to have better overall outcomes.

Have they said what exactly is causing the vascular or nerve problems?
extra cervical rib or large bones, large muscles or ligaments?

Of course with vascular there is a risk of clots, I'm sure they have mentioned that.
Are both the veins and arteries affected- have they clarified that?
Certain vascular issues do need to be surgically addressed.

For myself I would want to know these details.
exactly what the issues are
exactly what the surgeon proposes.
I would want to see the films and scans and have them show me what and where the problems are.
And get second /third opinions from top surgeons...to see if they all agree.


Do you think the PT was an advanced one?
What things were they trying for her?

I always come up with so many more questions....sorry..

Have you considered an evaluation by a very expert chiropractor?
Posture , alignment might be very helpful to look into.
I will say that I had the best help from my chiropractor and also an advanced PT {a highly regarded PT teacher}.
Along with adjustments my chiro uses low level laser, IF stim, TrP, he is very well rounded with his therapies.

Hyper mobile? that can play a big part.

Our useful sticky threads above the main threads list is full of best tips, polls, saved posts & sites - be sure to look thru those, it's like a crash course for TOS. alternative therapies too.
and a drs/PT listing - you might check thru those .

I will say that is she really does need to have a surgery- that a teen I think will recover much better than the middle agers that had surgery.
And I think many more have successful surgeries than post here or on other sites- most likely they are doing well and moving on with life.

My niece had a 9 level spine fusion 2 yrs ago -due to severe scoliosis and she is doing very well.

Vascular & the extra c spine surgeries seem to be the ones that do best, the nerve sx may or may not improve.

I'm not a surgery fan , but sometimes it is necessary if clots are a factor.

There are the 3 D MRIs that supposedly show things clearer - but I haven't heard much about them from anyone here for awhile.

I didn't realize I wrote a book....LOL

but if surgery isn't a necessity now or yet...

I would try Sharon Butlers TOS program { actually I did get it and so much was helpful} www.selfcare4rsi.com
Posture & Alexander or Feldenkrias type body work
Expert well rounded chiropractor or both a expert DC & advanced PT - {what was dd's injury?}

You can find lots of posture, TOS, triggerpoint videos on google videos or youtube - it really helps to see and watch how & what the various techniques are. some are helpful and some maybe not.

[Prudence]

Originally Posted by Jo*mar

I will tell you that the vascular TOS surgeries seem to have better overall outcomes.

Have they said what exactly is causing the vascular or nerve problems?
extra cervical rib or large bones, large muscles or ligaments?

No, they just ruled out the extra cervical rib.

Originally Posted by Jo*mar

Of course with vascular there is a risk of clots, I'm sure they have mentioned that.
Are both the veins and arteries affected- have they clarified that?
Certain vascular issues do need to be surgically addressed.

For myself I would want to know these details.
exactly what the issues are
exactly what the surgeon proposes.
I would want to see the films and scans and have them show me what and where the problems are.
And get second /third opinions from top surgeons...to see if they all agree.

Thank you, this is very good advice.

Originally Posted by Jo*mar

Do you think the PT was an advanced one?
What things were they trying for her?

Yes it was an advanced PT, one of the few in the country I'm told that work exclusively on TOS (not sure why I was typing TOC before...)

Originally Posted by Jo*mar

I always come up with so many more questions....sorry..

No, this is good.

Originally Posted by Jo*mar

Have you considered an evaluation by a very expert chiropractor?
Posture , alignment might be very helpful to look into.
I will say that I had the best help from my chiropractor and also an advanced PT {a highly regarded PT teacher}.
Along with adjustments my chiro uses low level laser, IF stim, TrP, he is very well rounded with his therapies.

She won't agree to manipulations and it may not be wise. Her PT did an adjustment on her shoulder on her first visit which shocked and scared her, but it did give her an immediate increase in mobility of her arm. However her vascular symptoms flared up near-immediately and were very bad for several days after. Her neurogenic symptoms were also much worse. The PT feels it is dangerous to try those again with her, and said she should have felt better for a couple of days after that adjustment.

Originally Posted by Jo*mar

Hyper mobile? that can play a big part.

Nope, that was ruled out.

Originally Posted by Jo*mar

Our useful sticky threads above the main threads list is full of best tips, polls, saved posts & sites - be sure to look thru those, it's like a crash course for TOS. alternative therapies too.
and a drs/PT listing - you might check thru those .

I will!

Originally Posted by Jo*mar

I will say that is she really does need to have a surgery- that a teen I think will recover much better than the middle agers that had surgery.
And I think many more have successful surgeries than post here or on other sites- most likely they are doing well and moving on with life.

My son has had 5 operations on his heart from the time he was an infant, so I'm no stranger to how amazingly children heal, however this is just such a radical procedure with what appears to be not so great statistical results. But I'm having a hard time finding pediatric statistics.

Originally Posted by Jo*mar

My niece had a 9 level spine fusion 2 yrs ago -due to severe scoliosis and she is doing very well.

Thank goodness!

Originally Posted by Jo*mar

Vascular & the extra c spine surgeries seem to be the ones that do best, the nerve sx may or may not improve.

I'm not a surgery fan , but sometimes it is necessary if clots are a factor.

She has a clotting disorder which for the first time is a benefit, but there is still a risk.

Originally Posted by Jo*mar

There are the 3 D MRIs that supposedly show things clearer - but I haven't heard much about them from anyone here for awhile.

I didn't realize I wrote a book....LOL

but if surgery isn't a necessity now or yet...

I would try Sharon Butlers TOS program { actually I did get it and so much was helpful} www dot selfcare4rsi dot com
Posture & Alexander or Feldenkrias type body work
Expert well rounded chiropractor or both a expert DC & advanced PT - {what was dd's injury?}

You can find lots of posture, TOS, triggerpoint videos on google videos or youtube - it really helps to see and watch how & what the various techniques are. some are helpful and some maybe not.

Thanks so much for all of this information and advice. I am super grateful

[Sheri_TOS]

Since this came about from an injury, have they tried a cortisone shot into the shoulder/surrounding area? The reason I ask is I injured my shoulder/brachial plexus about 21 months ago. I experienced significant vascular and neurologic symptoms from the onset due to the nature of the injury. The shoulder surgeon suggested a cortisone shot which really helped the nerves settle down. The vascular symptoms took longer but have significantly settled down since I finally had shoulder surgery. Nerve symptoms reappeared about 3 months post-op so they suspect 1) labrum didn't reattach (failed surgery), 2) developed TOS from injury/shoulder surgery, 3) rotator cuff problem has developed, or 4) combination of a couple of these.

How did she injury the area? Have they identified anything wrong with the shoulder? If the shoulder isn't functioning correctly, then the area is compromised which can lead to the vascular symptoms. Given the significant vascular symptoms and that it came from an injury, see if they can do something about calming the muscles down in the shoulder/front chest area.

[tshadow]

Physical therapy did not help me but made me worse.

If it were my daughter, I'd fly her to Dr.Annest in Denver out of St. Luke's hospital and have the full work done - you know, my list of TOS testing - ALL of it to make sure we're not missing another disease. Then, I'd ask his opinion on surgery. Do you want her to be able to be a mother? To hold her daughter? Or to go to college? ACT NOW>< You are the mother here. I had to fight 4 years for TOS surgery and there's no doubt by Annest that instead of 12 percent improvement (guess) I'd have more like 90 percent.

Bit difference. Nothing to be scared of. I and "L" did it at the same time and she's much better than I - she's going to school now!!!
el
So buck up Mom, fight for her, vigorouly, because TOS is just tightening, spasming muscles squeezing those veins and at some point they jsut rebel and become perm.

gotta run, I'm dying of paion

[kellysf]

Prudence,

It's bad enough going through this oneself, I can't imagine being a parent of a child with TOS. I have neurogenic TOS, not vascular, and have been going through this for almost 8 years.

For me, PT did more harm than good. I had surgery about 2 and 1/2 years after my symptoms started. I didn't have a good outcome from surgery. I'm worse as a result.

I shared your sense that the results of surgery were not good. I was also frustrated by the fact that there was no consensus on how to do the surgery, when to start PT, what PT should entail, etc. I felt like I was always comparing apples to oranges. But I went forward with surgery because I'd exhausted my options and didn't know what else to do to try to get better.

My sense is that surgical results with vascular TOS are better. With nerve related symptoms, if surgery is warranted, I would want to do it sooner rather than later. The longer the symptoms go on, the more likely people are to have long-standing problems. (This isn't a medical opinion, just an anecdotal observation.)

I think it makes sense to get yourself to one of the doctors in Denver if you can manage that. Get several opinions. Then you've got to do a gut check and figure out how to proceed. I do think that your daughter needs to be onboard, since it's her body and her future.

Good luck,
Kelly