[Smileymichelle]

I am not ready for surgery, but would like other assistance. What's the best place to turn next?

Before being diagnosed I saw 2 chiros who did not help - in fact one made things worse.
I have seen a vascular surgeon who did tests but did not offer help.
Primary care who was not that knowledgable about my symptoms and referred me to spine specialist.
Saw spine specialist, who prescribed gabapentin and PT. After 3 mo on PT, said PT probably wouldn't help and there was nothing more he could suggest beyond meds.
PT is maybe helping? Not sure and will probably stop soon. I still have symptoms.

Now, I don't know what to do. Would you recommend I see a different spine specialist? Another Vascular surgeon? Massage? Chrio specializing in Active Release? Naturapath?

Thank you.

[chroma]

Here is a link to your intro which describes your symptoms for people who might want to review that:

http://neurotalk.psychcentral.com/sh...747#post799747

My answer to your inquiry is to list all the things that I have found helpful as well as what problems I had that improved or not. I went over this a few times to make it thorough! I posted it in the thread on that topic:

http://neurotalk.psychcentral.com/post802248-72.html

In terms of outside help, it's time for you to switch up. Sounds like the spine specialist had his/her turn. Try a different vascular specialist, preferably one who lists TOS in their profile or is known to treat TOS. Try a different chiro, potentially using yelp.com or other sites to find a well reviewed one.

Don't wait for your next specialist to start trying things at home to improve your condition.

HTH

[TOSchick]

Non-surgical things that help TOS:

The Edgelow protocol (stretching scalenes, pushing down rib #1 through diaphragmatic breathing) is great. Though, as with any therapy, moving past your limits is going to flare you up.

Being really in-tune with your body and your limits is key. Over stretching, reaching, pushing, pulling, lifting is going to flare you up. So, if a PT asks you to lift 5 lbs and you experience any pain while doing so, stop.

Aquatic therapy is so much more productive for me than land therapy because you use the resistance of water instead of weights. So - you are having a bad day. In the water, you can VERY easily adjust the resistance you are putting on your muscles, your facets and also the strain on your nervous system. Two water therapy methods produce results:
- Bad ragaz (check out some YouTube videos)
- Watsu (Dr. Weil explains this well - google this as well)

The water therapy approaches above should decrease your need for any other massage or chiropractic adjustments. Though if needed, myofascial physical therapy on land might also help.

I am an overachiever, so limiting what I do is the greatest challenge while managing TOS. To make sure I am making very small but important progress each day, I look to a physical therapist who understands and who has treated TOS, 5 days per week. (When I max out my insurance, I will prioritize the water therapy approaches listed over land therapy)

It is a challenge to find practitioners who get what you are going through and focus on rehab vs. meds. I am not sure I can count how many hours I wasted with doctors and PTs who actually made things worse vs. better - it is possible to find them though. Remember you are the expert of your body and deserve referrals to individuals who might help you from the doctors who do not.

In metropolitan areas, it is possible to find land and aquatic PTs and importantly, physiatrists who can be your guide and manage your progress.

Hope this helps!

[jkl626]

Originally Posted by Smileymichelle

I am not ready for surgery, but would like other assistance. What's the best place to turn next?

Before being diagnosed I saw 2 chiros who did not help - in fact one made things worse.
I have seen a vascular surgeon who did tests but did not offer help.
Primary care who was not that knowledgable about my symptoms and referred me to spine specialist.
Saw spine specialist, who prescribed gabapentin and PT. After 3 mo on PT, said PT probably wouldn't help and there was nothing more he could suggest beyond meds.
PT is maybe helping? Not sure and will probably stop soon. I still have symptoms.

Now, I don't know what to do. Would you recommend I see a different spine specialist? Another Vascular surgeon? Massage? Chrio specializing in Active Release? Naturapath?

Thank you.

Where are you located? I would try another pt. hopefully someone who is familar with TOS. check out this list:
http://www.instituteofphysicalart.com/ipa/referral/list
I travel 50 miles to see mine after trying 3 other ones and 2 chiropracters. but you should know after a few weeks weather it is helping or not. Also a good pain dr. as opposed to a spine dr. is important.

[jkl626]

Originally Posted by TOSchick

Non-surgical things that help TOS:

The Edgelow protocol (stretching scalenes, pushing down rib #1 through diaphragmatic breathing) is great. Though, as with any therapy, moving past your limits is going to flare you up.

Being really in-tune with your body and your limits is key. Over stretching, reaching, pushing, pulling, lifting is going to flare you up. So, if a PT asks you to lift 5 lbs and you experience any pain while doing so, stop.

Aquatic therapy is so much more productive for me than land therapy because you use the resistance of water instead of weights. So - you are having a bad day. In the water, you can VERY easily adjust the resistance you are putting on your muscles, your facets and also the strain on your nervous system. Two water therapy methods produce results:
- Bad ragaz (check out some YouTube videos)
- Watsu (Dr. Weil explains this well - google this as well)

The water therapy approaches above should decrease your need for any other massage or chiropractic adjustments. Though if needed, myofascial physical therapy on land might also help.

I am an overachiever, so limiting what I do is the greatest challenge while managing TOS. To make sure I am making very small but important progress each day, I look to a physical therapist who understands and who has treated TOS, 5 days per week. (When I max out my insurance, I will prioritize the water therapy approaches listed over land therapy)

It is a challenge to find practitioners who get what you are going through and focus on rehab vs. meds. I am not sure I can count how many hours I wasted with doctors and PTs who actually made things worse vs. better - it is possible to find them though. Remember you are the expert of your body and deserve referrals to individuals who might help you from the doctors who do not.

In metropolitan areas, it is possible to find land and aquatic PTs and importantly, physiatrists who can be your guide and manage your progress.

Hope this helps!

I was thinking of trying watsu-I havent heard of the other one!

[Woodstock3]

Originally Posted by TOSchick

Non-surgical things that help TOS:

The Edgelow protocol (stretching scalenes, pushing down rib #1 through diaphragmatic breathing) is great. Though, as with any therapy, moving past your limits is going to flare you up.

Being really in-tune with your body and your limits is key. Over stretching, reaching, pushing, pulling, lifting is going to flare you up. So, if a PT asks you to lift 5 lbs and you experience any pain while doing so, stop.

Aquatic therapy is so much more productive for me than land therapy because you use the resistance of water instead of weights. So - you are having a bad day. In the water, you can VERY easily adjust the resistance you are putting on your muscles, your facets and also the strain on your nervous system. Two water therapy methods produce results:
- Bad ragaz (check out some YouTube videos)
- Watsu (Dr. Weil explains this well - google this as well)

The water therapy approaches above should decrease your need for any other massage or chiropractic adjustments. Though if needed, myofascial physical therapy on land might also help.

I am an overachiever, so limiting what I do is the greatest challenge while managing TOS. To make sure I am making very small but important progress each day, I look to a physical therapist who understands and who has treated TOS, 5 days per week. (When I max out my insurance, I will prioritize the water therapy approaches listed over land therapy)

It is a challenge to find practitioners who get what you are going through and focus on rehab vs. meds. I am not sure I can count how many hours I wasted with doctors and PTs who actually made things worse vs. better - it is possible to find them though. Remember you are the expert of your body and deserve referrals to individuals who might help you from the doctors who do not.

In metropolitan areas, it is possible to find land and aquatic PTs and importantly, physiatrists who can be your guide and manage your progress.

Hope this helps!

I'm having a tough enough time just trying to find an experienced, competent PT let alone one who is familiar with water therapy approaches! You must be one of the lucky ones who lives on the West Coast, yes?

[stos2]

Originally Posted by jkl626

Where are you located? I would try another pt. hopefully someone who is familar with TOS. check out this list:
http://www.instituteofphysicalart.com/ipa/referral/list
I travel 50 miles to see mine after trying 3 other ones and 2 chiropracters. but you should know after a few weeks weather it is helping or not. Also a good pain dr. as opposed to a spine dr. is important.

The link posted above by jKl626 to Institute of physical Art shows 5 CFMT's in VA, are none of them close to you? As jkl626 mentioned she drives 50 miles and I had to drive 400 miles from Northern Cal to So Cal to see the therapists at Ando and Aston.
If you can go to one of the CFMT's atleast for a couple weeks and keep them as a baseline, you will know what to look for in a PT in your local area. Hope that helps.

[Woodstock3]

Originally Posted by stos2

The link posted above by jKl626 to Institute of physical Art shows 5 CFMT's in VA, are none of them close to you? As jkl 626 mentioned she drives 50 miles and I had to drive 400 miles fro Northern Cal to So Cal to see the therapist at Ando and Aston.
If you can go to one of the CFMT's atleast for a couple weeks and keep them as a baseline, you will know what to look for in a PT in your local area. Hope that helps.

Yes thanks. I have tried getting in touch. A few I could not find - i guess they have moved. One works at a hospital in Northern Va - I am not sure I could get into that particular one and 2 others are 2 1/2 hrs from me. I will keep up the search! Thanks for all the help.

[Iris]

Originally Posted by Woodstock3

Yes thanks. I have tried getting in touch. A few I could not find - i guess they have moved. One works at a hospital in Northern Va - I am not sure I could get into that particular one and 2 others are 2 1/2 hrs from me. I will keep up the search! Thanks for all the help.

I completely agree. The pt who I have been seeing twice weekly since May initially said she was not sure if she could help me. When she saw me the first time, she said that we should try six sessions to see if it helped. By then I had the feeling back in my fingers - they had been numb for three years! it is really critical to see someone with the expertise.

[Jomar]

Sometimes just going into a PT place and talking with the people can give you some insight into if they might know enough to be of help.

I had very good results with a well rounded & skilled chiropractor that used many of the PT type modalities as well as adjustments. Gentle & precise adjusting , no fast hard cracking at all.
He used NIMMO which is similar to manual trigger point work
Ultrasound
low level laser
IF stim
top rib mobilization
and any other joint that caused problems - foot, wrist, elbow...

So that may be another option to look for.
Takes a lot of calling , asking questions, luck & detective work.

I also had very good luck when I found a teacher of PT that had his own PT place. He also studied ergonomics in the workplace and was a consultant for businesses.

I would suggest asking about a free trial or evaluation, and use that to get a feel for skill set and knowledge. Don't sign up for any extended treatment plan, just in case you decide it isn't the best fit for you.