edgelow kit
 

Hi, several people have asked for the info on how to purchase the kit. you can call medical dynamics in rohnert park, california. 800 945 0302. The whole kit is about 333 dollars. I bought everything except for the ball and the ball was 23.95.

I would also suggest getting a soft 6 inch by 36 " foam roller instead of the one that comes with the kit. The one that I use is the pro roller soft from OTPT. They are also available on Amazon and have a marbled look. The foam roller and the gymnastic ball are part of the progression exercises.
But, I would also like to add that you don't have to buy the whole kit, you can start with the core program first.

For beginners, the most important elements of the core program, are..
1. DVD,
2. Booklet
3. Manual blood pressure meter with cuff ( one can buy this at any pharmacy)
4. Pinky ball on the stick ( can be found at therapists or online)
5. Air pillow.
The CD is not really necessary, though his voice is very soothing and you can order it if you want or substitute with any soft music or ocean sound or anything that is relaxing.

Make sure you have a therapist to guide you, it looks easy, but professional guidance would be helpful. Have your therapist have a look at the booklet and DVD before you begin. There is this whole philosophy in the booklet that one has to understand to follow his protocol. Only when and if you can master the core program it's worth getting the props needed for the progression exercises.

I honestly use his core program in conjunction with my other exercises given to me by Dr. Art Ando. Please don't substitute the Edgelow protocol for whatever is working for you right now, may it be manual therapy and /or exercises, but rather let it compliment whatever you are already doing. that's the way it works best for me. I still do the edgelow core program every single day, before I start my other exercises.

I completely agree. My PT incorporated it into my program.

Iris, I am so glad that your PT believes in it. It really works best with manual PT and other exercises that your PT might have given you.

I wish Peter had recognized the need for manual PT along with his protocol. Once I started manual PT with another therapist, his protocol started working for me.

I completely agree with Stos2. I think the Edgelow program should def be incorporated with manual therapy. By the way, stos2, I am back in the bay area! Have been meaning to update my thread and will do so asap. Are you still seeing the therapist in Dublin or only Art Ando in SoCal? How are you doing now?

Hi parbie, so good to hear from you and good to know you are back in the Bay Area. I am actually seeing a CFMT in Palo Alto about twice a month. Still doing Art's exercises and Peter's core program. I am doing much better, I am 70 to 80 percent better I think.
How are you feeling now? Are you seeing Susan Casto?

Hi Parbie and Stos,Happy New Year! Parbie how are you feeling since the surgery? Do you think the pec minor tenomoty helped you? I think I am going to finally order the edgelow kit. I am still having issues mostly shoulder and hand pain and numbness and still seeing Dr. Ando, I have also started seeing ken the massage therapist at Ando and Aston and he is great-myofacial release and rolfing teechnique mostly. I am kind of at a plateau-not getting better enough. I am going today for more trigger point injections and will be making an appt soon with Dr. Jordan to talk about a nerve block. Keep in touch-
JKL

Happy 2013! Jkl626, when you reach a plateau, no matter how comfortable it is, is when you need to search for another road.
My local therapist, the first one I went to for myofascial release had said that the "Road to good health is not straight." That's what made me think of coming to Anaheim. Incorporate whatever helps you on the way and add whatever else you may need. What does Art say, is he recommending surgery? In my case the Stanford surgeon had sent me to Peter for couple weeks to see if he could help me. Peter is the one who had suggested a scalenectomy since I just couldn't do his breathing exercises without going into excruciating pain. Peter had worked with a lot of surgeons who removed ribs but didn't feel it was necessary if one could practice his protocol as it helps lower the first rib over time with his home exercise program.I am so glad I listened to him. Has Art been indicating anything or that you take any direction? jkl, I would suggest if you can come and learn it from Steve at Hayward, that would be your best option, and then follow the program at home. I beleive you have some family in the Bay Area.

Jkl, what are you trying to achieve with a nerve block? Just curious?? of course good luck with whatever you decide to do.

Thank You Stos that is good advice and in the New Year I am planning to do that. Art does not recommend surgery. He thinks I am better, I think he wants to release me soon, i have been going for 8 months! He wants to release people when they are 80%, -and I am better maybe 60-70 % but just not enough for me-I have been having alot of pec minor and underarm pain and numbness and of course it changes every day so on days when the pain is bad it doesnt feel any better. I havent seen him for 3 weeks ( I saw James right after xmas) but I see him tomorrow and also get a massage.

i had Trigger pt injections yesterday and feel much better today-I have to note this time how long it lasts. My purpose in finding out about the nerve block is that Dr Jordan had recommended it to me at one time, and I havent seen him in a long time so I need to go back to him and tell him my progress and see what he recommends.. If it does what the Trigger points do but last longer then I might do it. He does radio frequency so that the block lasts longer-he says up to 6 months. The fact that the Trps help tho make me think it is more of a muscle issue than nerve so I am not sure.Dr J reccomends surgery if I want to go back to my regular work and I do. I will lose my health insurance if I dont. but I am not considering the surgery at this point.

Maybe I will plan a trip up there to see Steve.Do you think I can go ahead and order the kit anyway? I was going to try it on my own first. I have done some on my own already. Do the breathing exercises really lower the rib? Do you actually do it several times a day?

I am also looking for a pt and masseuse and maybe a new acupuncturist closer to home, Art has a colleague he studied with who is on the CMFT list and now that my insurance has kicked in again I will be trying some new therapies. I will keep you posted.

jkl626,

My therapist here thinks the diaphragmatic breathing is key to helping us not chest breathe even when we are sitting or standing, consciously all the time. Chest breathing is what causes our chest and muscle tightness and causes the ribs to rise and the first rib in turn to rise. ( Peter's philosophy) If Art does not think you need surgery then you probably don't. They are good at figuring that. As I mentioned before in my post don't order the whole kit. Order only the core stuff.
Infact you can order just the DVD and the booklet, if they sell piece by piece. You can buy the manual blood pressure cuff from a pharmacy and you already have the pinky ball on the stick from Art right? Buy a wide quilting ruler that is about 5 " by 24" put it on a table so it over hangs and use that to secure the meter. Follow directions from his DVD and booklet. Put a heavy book on the ruler so it does not slide.
First just learn the breathing, both the abdominal and the chintuck with the cuff. Don't rush this. It takes time to get it down. For me I can't do without Peter's core program nor can I do without Art's exercises. The combination with mobilizing from my PT here in Palo Alto works great. My surgeon and also Peter once told me for us TOS patients, if you feel 80 or 90% better then that's our normal, we just have to accept it as our normal. we can never be a 100 % and it's ok if we are ok with it.
My therapist is teaching me to notice my breathing when I am sitting and trying to make me consciously do diaphgramatic breathing. Very important to use the sitting pose that Art has taught us with the weight on the feet and siting a little forward with breast bone over the pelvis bone while doing this breathing. As she feels my diaphragm doesn't stay supple and soft and doesn't move smoothly and is causing some of my stiff rib problems. She is working on my diaphragm too since couple visits.
To answer your question Peter had me begin with the breathing exercises twice a day. After a whole year, I now do it once a day. Good luck:)

Thanks, I wonder why i dont get notifications from this thread. I have been doing the first few breathing exercises but not that consistently and have been trying to be more concious of my breath during the day.but I definately think the DVD will help. Is the booklet the same as the xeroxes I have? I am going to take your advice and order it this week.

The Trigger pt injections helped me right away and then I saw Art and Ken yesterday. They really beat me up-I think it is too much for one day as I flared afterwards, but today I feel better. Art was actually using his knee to try to get my ribs to move. He keeps saying I am almost there-but its hard to see it. I def have to work on my posture more. I am going to have to ask him to go over the posture stuff with me again. Its hard when you are short to always have your feet on the floor! He also says I really have to dig in to get the back of my subscapularis, which is causing alot of the problems.

Thanks for all your advice!

Jkl, sit in front of the mirror on a bench or stool that helps you sit in the pose Art has taught us with feet firmly on the floor and weight on the feet. If I recall that is the very first thing Art teaches everyone. The simplest things we are taught are sometimes of the most significance! Except it is hard for us to give it importance, which is such a folly.(Me too)!
My therapist here taught me how to stand the first time I saw her. Again breast bone over pelvic bone. Art can go over it again with you. Good idea to have him work with your posture again.

Then notice when you breathe with your diaphragm your abdomen should be moving and your upper chest should barely move. My therapist put me in front of the mirror on wed and showed me how important the posture is as you almost can't avoid chest breathing if you are not in the correct posture. It takes time but slowly over time it should help us get into the habit of breathing like that all the time. I am still working on it. Marc bought a wedge from " relax the back " to help him sit in the correct posture in the car I think.

To answer, your QS. I think the xeroxes you have are okay to start with, you don't need the booklet for the core part of the program. I guess, but I would order the DVD and start soon. You must have the DVD to do it all correctly.

Peter's protocol has a rib mobilizing section with a pinky ball where you mobilize your back ribs, that should help you move your ribs in the subscapularis area. Also remember, I mentioned mobilizing that 3rd -4th maybe 5th rib in the front where it attaches to the front of the rib cage slightly left or right of your breast bone with a yamuna ball while standing against a wall?( Given by my therapist here in Palo Alto). Mobilize that first in the front as the foam roller can't get in there, then mobilize the back ribs using Peter's method with the pinky ball. (I still do Art's foam roller exercises and all others. Don't stop those.)

jkl626, please copy all this info and paste it into a document you can refer to later, as I will be out of the country the whole month of feb and won't be visiting the forum. Iris is working on some of he Edgelow stuff you could PM her if you need any help in Feb.

I actually ordered a book that Edgelow has a chapter in and it has those rib mobilization exercises in. I brought it to Art and he says he doesnt like them? go figure, but I will give them a shot. I have a Yamuna ball , 2 actually 1 black one and 1 small purple one that is harder. I started to use it laying down because the roll is too soft for me now. I will try it on the wall too. I am going to order the dvd and booklet today!
It sounds like the PT you found there is really good and willing to work with other peoples protocols. I'm sure I will talk to you before you leave.

I have a question - I take it that Peter Edgelow is retired and that the web site no longer exists - what I don't understand is if he and his protocol are important factors in TOS healing, why is it so hard to find any info on it or trained physical therapist. Why is it not easily available?

He just wrote a book with Dr. Dean Donahue. So I am hopeful that all the necessary information will be in there.

He also has a chapter in a book called: Physical Therapy for the shoulder that I ordered from Amazon. It has some of the exercises in it. I am still going to order the dvds and booklet from Medical dynamics. Dr. Jordan helped write the book that is coming out too-I think its by the whole TOS consortium. I hope it comes out soon, he's been telling me about it for almost a year.

I dont know that Edgelows protocol is that widely accepted, but it is at least one thing that only addresses TOS and it is important to get that out. I dont know why him or his protege didnt/ dont promote it more. I know Peter has been very ill and it is also pretty old. The book I have was first published in 1987.

Just like everything in TOS, getting good info is like a treasure hunt. Thats why this forum is so amazing!

You are so right. I would not have known about edgelow protocol except for this forum. When I asked Dr. Donahue about whether I should do it, he was very positive. And then, being able to take the materials to my wonderful physical therapist was very helpful.

Woodstock3,
The top Tos surgeons in Northern California all know Peter Edgelow and when I visited the Stanford surgeon for my TOS is when he sent me to Peter. That's how I landed with him. But I guess you have a good question. Well Peter's philosophy is different and other therapists would have to believe in his philosophy to want to train under him. Also his protocol takes time to master and only then it works. That too if you don't have anything that needs surgery like I had fibrous bands that kinked my subclavian artery. The first time I went to Peter, his protocol did not work for me. Luckily Peter recognized the need for surgery, but felt a scalenectomy was enough and suggested I don't get my rib removed.
He was so right, my surgery was successful and I felt perfect, then after about 10 months, this time UCSF sent me to Peter because of scar tissue issues and he was able to help me again to work on his protocol. One of UCSF's top rheumatologist's had been Peter's patient and had been a success story and playing Tennis again.
But it didn't work as perfectly for me as it does now with my functional manual therapist working on my core, my ribs, my diaphragm) so each one of us is different and complicated. It works great in conjunction with manual therapy and other exercises given to me by my CFMT.
Wish Peter had recognized the need for manual therapy along with his protocol, he would have had a lot more beleivers!
It requires a lot of patience to believe in his protocol. I wish he was an enterprising businessman and had made this more wide spread and opened some sort of a TOS treatment center.
But he isn't and he also suffered from severe emphysema himself throughout his life, he is a very intelligent, gentle, soft spoken soul that just kept on with his research on neurovascular compression in TOS patients and worked with the top surgeons in TOS and his local patients and wrote TOS chapters in college textbooks and other books.
For us TOS patients, when you are in so much pain, all you want is to take that rib out and/or whatever else is needed and forget about working on something that takes months to master.

I wish they had not taken down his philosophy and his website though. As soon, it maybe a lost science! And sadly so!

completely agree
 

Yes, I strongly agree that manual therapy is necessary, not just the edgelow protocol. I feel so lucky to have a good physical therapist.

Which CFMT is that? I'm looking for someone experienced and live near San Mateo..

Any suggestions on specific muscles for them to work on?

Mine is Lang Ngov in Palo Alto Medical Foundation in Palo Alto. Do you have TOS? She is not a TOS specialist, or so specifically experienced in TOS, but she is good.
I can't give any advice on any specific muscles or anything , it's really upto the therapist and everyone's body is different.

You are lucky Iris!
 

Iris, You are so right, we are so lucky to have such good therapists that are ready to accept other protocol that works for us ( in my and only see our best interests as patients. Without them being as open minded, it would be hard to be recovering as we are.
The road to good health is really not straight. I count my blessings every single day:) as somehow I have landed with good therapists and I am very grateful for that.

Hey Jkl sorry I hadn't been keeping up with the forum the past month or so, I guess I have been getting kind of discouraged now that it's been almost 6 months since my surgery and I feel like I am not really getting better. I will post an update on my thread right now. How is the edgelow protocol working for you? Did you ever end up getting the nerve block?