During my rib resection and scalenectomy, Dr. Donahue cleaned up all the scar tissue he found surrounding my nerves. I have never felt better, honestly. He said my nerves were actually wrapped around the first rib, with lots of scar tissue attached from years of rubbing against the bony protrusion on the rib.

Since you are in SoCal, it may be worth at least one visit to Dr. Ando - http://www.andoaston.com/staff. Just make sure you are getting Dr. Ando for that first visit (although James is good too).

My primary care physician is a DO and Dr. Ando's techniques are very similar to osteopathic manipulation in my opinion.

He sounds good. Has it helped you at all? I was hoping to find an Osteopath who is covered by my insurance as my PT visits will run out soon.

Yes, he has helped. I sometimes wonder If I had found Ando two years ago If I would be needing surgery right now.

Thanks so much to all of you and sorry it took me so long to write, I also feel that Peter's core technique does help but in a limited way, and I can't get past the core program without getting into pain.

This is what helps me...
1)About 30-45 mins of cardio everyday, moving around a lot, sitting minimally.
2)Abdominal breathing in a limited range reading of 40-70 only (my comfort zone) on the blood pressure meter and the longus colli strengthening again with the blood pressure meter within 20-21,22 only.
3) I also have to be on some kind of a fibromylgia drug to be able to do Edgelow's therapy twice a day.
4) Keeping positive.
5) Mentally feeling in control versus out of control does help a lot. This is a big One!
6) Trying to stay stress free, no matter what, does help a lot!
7) Knowing and being aware of my limits does help a lot.
8) Doing Edgelow's core program twice a day does help me a lot and I try and stick to that routine, no matter what. It's the only thing that helps me as I can't do any stretches.

Peter is not practicing anymore due to health problems, but there is a Steve at the Hayward Practice who has trained under Edgelow for a good amount of time. I don't have any experience with Steve. To answer the question from some of you on the Edgelow Kit, I believe it can be ordered from Santa Rosa, but I wouldn't purchase the whole kit without seeing a therapist who has been trained and can guide you with the Edgelow protocol.[/B] To start with, I would only purchase a manual blood pressure cuff, if you want to try it out.

Hope that helps,
Good luck to all of you,
stos2

Hi Anne4tos,

I find myself in a similar situation as yours. I do the Edgelow breathing exercises (only core program) in a limited way along with the three different types of breathing (Diaphragm, lateral costal and sternal) to move the scar tissue, and it does seem to move the heaviness in there, I don't know whether its the scar tissue or some accumulated fluids but it does feel good. What about you? Does it help you even a little bit?

Any thing else that helps you? Have you been to a good massage therapist or an osteopath? Anyone you can suggest to manipulate or mobilize? I am in the east Bay area.
Does everyone with TOS have trouble sleeping on their sides? I can't sleep on either of my sides at all.

Thanks, stos2

Stos:

I do diaphragmatic breathing, but I prefer the Feldenkrais method of breathing. It seems to move more ribs and expand into the brachial plexus more than Peter's method. I also use his air pillow, ball on a stick and 3" and 6" foam roller. I strengthen my longus colli with simple chin tucks rather than the whole blood pressure apparatus. I do this routine twice a day. It does feel good to do it along with cardio.

The only thing which has really helped me though is manual therapy. I receive 2+ hours of hands on therapy per week focused on myofascial release and breaking up scar tissue and adhesions. I wish I had done this at the start of my problems. I will be returning to an Osteopath soon.

Where are you in the East Bay? There was/is a PT in Berkeley named Lori Sweet who treats TOS. I can't find a link for her as she is either no longer in practice or I'm spelling her name wrong. Dr. Ellis would probably have a contact number for her.

Anne

Add-on Edit: Sorry to read Peter is no longer practicing. He's such a nice guy and always a comfort when in pain.

Do you have a good source for the Feldenkrais method of breathing, such as audio, DVD, youtube or URL? Obviously I can search; I'm just looking to see if you have a recommendation.

Beware of Dr. Aaron Filler! I got a staph infection from the operating room when he did surgery on me to remove scar tissue! This left me worse off than I started out to be as a result he wanted me to get a pain pump! I have lived on pain medications without a pain pump since I had the nightmare surgery at Dr. Filler's hands all a result of a work injury!

I hear that Drs. Ahn and Gelabert fix Filler's mistakes. Have you considered getting the rib resected and scar tissue cleaned up by a vascular surgeon since Filler is a neurosurgeon and only does scalenectomies?