Parbie,
sorry you are still in so much pain. contact stos2. she has a pt in Nocal that she likes. She also has seen steve and does Edgelow. I think you will need some massage or acupunture as well as the pt.
keep us posted.
jkl

Thanks jkl, I will def contact her I will be in N Cal in a couple of days and want to set up all my PT appts beforehand. Will keep you posted once I get there. On the upside I was able to walk around Denver a bit today still had the usual pain but I think it was good for me to get out of my hotel room for a couple hours. I was wearing the arm immobilizer but it seemed to bother me more than help because it is so thick and wraps tightly around my torso, I am going to have to wear it again to the airport so I can avoid anyone bumping into me, we'll see how it goes.

Thanks brmr, I know this process will be long so I will try to just take it day by day. I think once I start regular sessions of PT I will hopefully see some improvement, I know 10 days post op is still early. I wish you a speedy recovery, thanks again for sharing your progress

I have only seen Peter and have not been treated by Steve, but Steve is the only one you can see now and I beleive he has trained with Peter for 12 years and should be good. Parbie I have sent you a PM on the forum.

So I am just over 3 weeks post op. Still some pain similar to pre op but I feel I am getting a little better as the days go by. Some days I feel okay, definitely much better than before surgery, until I overuse my right arm so I am still trying to limit how much I use it. I am not on any proper PT treatment yet as I have been figuring that all out and decided I want someone who can do manualized therapy and follow the protocol I received from the PT in Denver. The breathing exercises from Edgelow's protocol just isn't enough although I plan to continue doing that at home combined with daily walking and seeing a therapist who is more manualized. I have found a PT named Susan Casto who has a CFMT and found her through the PT website JKL posted a while back. She is in San Jose and Menlo Park. My first visit with her is tomorrow. Apparently she battled TOS herself and has some quite some experience with treating TOS. Will post back on my experience with her.

Also, turns out I won't be staying in the area much longer, decided to spend some of my time recovering in Toronto where most of my family is. I am still trying to find a therapist there who can continue what I begin tomorrow. I may be back on the West Coast in a few weeks after I follow up with Annest and Sanders in Denver and decide whether I want to go ahead and do my left side as well.

Forgot to mention, I paid Dr Wladislaw Ellis a short visit last week. He is suggesting heparin injections. I am still considering them, my next appt with him is next week. I am thinking maybe I should give myself more time and begin proper PT before doing any more injections for pain relief. Anyone ever had these?

why heparin? heparin is the same as lovenox- an anticoagulant used to keep you from clotting. so I am not clear how that would help with pain relief. Let us know!

parbie,

Susan Casto seems very highly qualified and has also trained under Peter Edgelow. Unfortunately she is not in my insurance.
Good luck!

I truly feel the Edgelow Protocol mostly works along with a good manual PT atleast in the beginning to bring about more flexibility to be able to do his exercises without pain.
What also helps is to put a heating pad under your affected upper back, when you are doing the breathing exercises, it's much easier to arch and the mild heat helps with the stiffness.

I would wait for the injections till you see Susan, you might not feel the need for them, hopefully. so good to know you are beginning to feel better.

sounds good-I'm so glad that list is helping people find good pt. Good luck with Susan. Keep us posted as to how you like her. Dr. J thinks heparin is outdated, since botox came to be the new thing. I have seen Ellis studies and he says he has had some success, but he is the only dr who uses it.
I would wait too,you havent had very much time for recovery yet.
take care,
jkl

Thanks for the input jkl and stos2. I have decided against the injections and will give myself more time with rest and PT.

My appointment with Susan was great. She is definitely the best PT I have come across in terms of having the combined experience with Edgelow's protocol and manualized therapy. She is very very knowledgeable and as I mentioned before had TOS herself (treated non surgically). She has training with joint and soft tissue mobilization as well and I honestly think she is the best person to see if you are in the Bay area. My appointment was scheduled for 1 hour and she spent a full 2 hours with me.

I learned quite a bit from her and really wish I could stay in the area to continue my treatment with her. She said she feels the breathing component is definitely an important part of the recovery process, however once I am less sensitive, manual therapy needs to be worked in as well. Apparently my nerves are really fired up and even the slightest movement of my joints is difficult at this point without causing pain. My daily exercises for now will involve walking for 20 mins, diaphragmatic breathing for 20 mins, careful single joint movements of my arm, wrist, and elbow, as well as nodding and shaking of my head while lying down, and scar tissue massaging for a few minutes to help avoid the buildup of scar tissue, along with continuing with the icing on my scars and heat on my back muscles (all of this is to be done 4 times a day). She plans to work more on my left side a bit during our next and unfortunately last session (for now), since it less sensitive and hasn't been operated on yet. She also explained more to me how my winged scapula (resulted from my surgery may even be the source of much of my current arm and hand pain as my long thoracic nerve is very irritated. It also weakens my back muscles. So basically, I have a LOT of work to do before I can begin to see any real results and get back to any normal activities.

Also, after reading my surgical notes from Sanders and Annest, I noticed them saying something about me having 2 phrenic nerves on my right side. We are only supposed to have one. Susan explained the phrenic nerve is related to the diaphragmatic breathing but also to our emotions, I am wondering whether this somewhat explains why I am extra emo, I thought it was just a woman thing along with the stress of the pain and recent surgery and the meds I am on lol. She literally also said she is surprised how calm I was and that I wasn't a basket case (although I definitely am at times). I need to do some more research on the phrenic nerve as I am surprised still that not only do I have the extra c-ribs but also an extra nerve.

Btw Stos2, Susan's PT place apparently doesn't accept ANY insurance. I have to submit invoices for reimbursement to my insurance and put them as an out of pocket provider and hopefully that will cover some of my costs.

So anyway, I am hoping Susan can somehow communicate with the PT I find in Toronto so I can continue what I have began here and I hope I will start to see some more improvement soon!!