I just came back yesterday from my second week of treatment at Ando and Aston in Anaheim hills in So Cal. It was so worth the two trips I have made from Northern California to see Dr. Art Ando and Dr. James Sposa, physical therapists, so highly specialised, so good at evaluating, they truly seemed like human xray machines and they found lots of problems to fix, from ribs to musculature to postural issues and all the manipulation and mobilization of ribs, muscles, tissues, nerves and myofascial release that they did on me just felt soooo good and so right, it did not make me sore but just lighter and gave me more mobility and I landed up having three visits in three days on my request (I wanted to make the most of it since I had made this trip specially for getting better!).

Came back with couple more exercises that I did not have time to learn on my first trip which was in the 3rd week of August.
I was dying to post after my first trip, but just thought I should wait after my second trip. I give them a big thumbs up because to be very honest I have been forgetting to take my neurontin in the middle of the day as I don't get into that " must take that edge off" situation.
I think truly with Ando and Aston I feel I have found the missing piece of my puzzle, and it is just a matter of time for me to get out of this.

They have given me my Eval as well as all detailed daily reports to share with my therapists here. It's been a team approach and I am very thankful for that.
In the meanwhile I am going to plan on seeing a CFMT (Certified functional manual therapist) and trained in the PNF technique local to Northern Cal, keep working daily on those exercises taught by Ando and Aston, along with my old ones including the diaphramatic breathing and the soft tissue and scar mobilization with my local therapist.

Long term plan is to go see Dr. Ando and Dr. Sposa in about 4 to 6 months for a re eval as they have been practising for a long time, and I consider them my baseline.
I had to post as I have found so much help on this forum, that it would be a huge loss if I did not share my experience as I was headed to see a couple of surgeons out of town in June for possible brachial plexus neurolysis or first rib removal /tenotomy which would have made me a redo case possibly resulting in even more scar tissue as I am a post scalenectomy patient and now I have been able to avoid that, hopefully forever!

I am very thankful to all of you on the forum who posted and encouraged me to keep looking....
Speedy recovery to all of you. Keep researching and keep being positive! A door always opens

What types of exercises/program do they have you doing? I know ppl have such great success and improvement with Dr. Ando. Wish i was on the West Coast! I hope you continue feeling better and seeing much improvement. Did your scalenectomy cause your scar tissue?

My right scalenectomy (2002)is still doing good. Left scalenectomy (feb 2010) I had scar tissue issues 10 months post surgery.
The exercises at Ando and Aston are prescribed after an eval so you have to see them for an eval since they are specific to your condition. You do need some props for them.
Once you visit them they give you a video exercise program online that you can sign into with the password given by them.
You can try calling them and have a phone consultation, I think their first consultation is free. Since I was able to travel to them, Dr. Ando told me he needed to see me for couple weeks, twice a week for him to be able to assess me and help me. There phone number is(714) 974 0330. Their website is www.andoaston.com and you can email Dr. Ando at arta@andoaston.com.
Hope that helps.

Thanks for the info. I looked at the list for VA but it's very short. A few i tried to contact but came up empty handed. Must have moved on to someplace else. I will call their office to see what I can find out. Did the same surgeon do both surgeries? Good news that the right side was successful. Its hard to find many success stories esp with the rib removal.

so glad it is been helpful for you stos2, I think those of us who have seen him after many other pts recognize that he is a master.

woodstock:

The home exercises and props are equally important. the soft roller has been a big help for me when you lay on the trigger points(tender areas around the ribs) an breathe 3 times deeply in each place.

I believe some of the other pts on the IPA list use the soft roller too
( Heybro's pt in MN does.)
(http://www.instituteofphysicalart.com/ipa/referral/list)

if you cant find one check out http://www.meltmethod.com for melt roll instructors.

the other thing that has been helpful is the karate strap for stretching out my scalenes and traps.

after that there is strengthening the neck and shoulder muscles with a theraband.

They are all relatively simple and not time consuming exercises.
It is important to be shown proper technique by a qualified professional,but there is lots published on line as well if you cant fine a good one!

good luck!

jkl:
Thanks for the info. My problem is the list for VA is very short/ and I've had some trouble locating ones that are listed. I am going to see an oesteopath this week so maybe he will have some good recommendations for PT. I will take him Dr. Ando's info and the additional info you have provided. I am far removed from "civilization" so I will have a long drive to look forward to!
Am i correct in saying you have not had surgery? I'm also trying to avoid going down that road if possible. My next step is Botox in the scalene. Hopefully i'll get enough relief to start PT!
Thanks again for taking the time to share your info!

Yes the same vascular surgeon did both surgeries, they were done in India by a FRCS (fellow of the Royal college of surgeons in England).
I guess since all this new treatment by (my local therapist here as well as the therapists at Ando and Aston ) is working and I am progressing well, I guess I could say the second surgery was successful too as I remember telling people I felt perfect for about 10 months except this time I developed scar tissue and tightness issues 10 months after surgery, which no one could help me with and in time it got tighter and tighter and started affecting my ribs, my posture as the body goes into a protective mode and as the muscles shorten and tighten, everything goes into dysfunction, the space gets smaller and you start having compression issues of nerves and vessels again.
Dr Ando mentioned that a lot of people that suffer from fibromylgia have those same tightness kind of issues and sometimes it just a mix of a lot of issues like that leads to fibromylgia.
That probably explains why Neurontin/Lyrica kind of medications works for people like us.
I am posting this so people like me who have had issues post surgery maybe still have a solution and hope

Thanks for providing such valuable information. Wonder why you developed scar tissue with one scalenectomy and not the other? I am so happy you are improving and hopefully no more surgeries! I am still looking for an experienced PT here in VA. Sounds like finding the right one can make all the difference in a successful outcome!

I wish I had an answer to why I had scar tissue issues with one surgery and not the other. Human anatomy is so complicated.

I had scalenectomies because in my case, my surgeon did not find the need for rib removal as he was interested in removing the compression that led to a fall out in my subclavian artery where the pulse becomes zero. ( Did I forget to mention that I had bilateral arterial TOS). Once he achieved the blood flow, he felt that it did not warrant rib removal because of all the complications and risks involved.

But that does not mean scalenectomy is a fit for everyone, some people need the ribs removed, as it does create so much extra space. Everyone's case is different, and it justifies whatever is best for them.

Some people are fine without surgery as well, just have to put those exercises in your daily routine and that's enough for them to live with some limitations but not affecting their quality of life immensely.

My surgeon told me that once you have TOS you have some percentage of it all your life, you cannot be a hundred percent perfect and you just have to accept that. Don't do anything that builds those pects and scalenes in the gym.