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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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My TOS Surgeon Search on the East Coast

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Old 05-07-2015, 11:40 PM #171
parbie parbie is offline
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Join Date: May 2012
Location: Orange County
Posts: 188
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parbie parbie is offline
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Join Date: May 2012
Location: Orange County
Posts: 188
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Originally Posted by Akash View Post
Have you tried Edgelows protocol? Its much more gentle than mobilizations etc which IPA does.
Yes, it was one of the first things I tried, even before my first surgery. It would only increase my symptoms. I tried again following my first surgery until I found out I needed a second one. I will do diaphragmatic breathing now but if I do it too long it still bring about my symptoms.
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Parbie

-6/20/14 Seroma Drainage Right Side

-7/18/13 Re-do of Right sided Supraclavicular Thoracic Outlet Decompression by Resection of Cervical Rib, First Rib, and Neurolysis

-8/30/12 Unsuccessful Right sided Supraclavicular Thoracic Outlet Decompression via Scalenectomy, Brachial Plexus and C2 through T1 Neurolysis, Resection of fibrous band attachment to Cervical Rib and Pectoralis Minor Tenetomy
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"Thanks for this!" says:
Akash (05-08-2015)

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Old 05-07-2015, 11:58 PM #172
parbie parbie is offline
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Join Date: May 2012
Location: Orange County
Posts: 188
10 yr Member
parbie parbie is offline
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Join Date: May 2012
Location: Orange County
Posts: 188
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Hi Parbie,
its so good to hear from you. i'm happy to hear you are in S. California and that you are able to work even if there is some pain. I am curious if you do go and see Dr. A. I still highly recommend him and his team but after seeing him for a couple of years off and on, i realized I was not really getting much better. Sometimes it flared me up because it is very aggressive. I stopped doing all their exercises for awhile but now am trying to add some back in. I can fill you in more by e-mail or PM...
I have found a new PT closer to me in Santa Monica that has helped me alot (very gentle)and I am also trying Prolozone injections. Once a month-3 times. it is now mostly covered by my insurance. I can feel a difference so fingers crossed.
I have had good luck with injections: Trigger point and now ozone so I would recommend them for tight muscles.
I may still go back down to see Dr. A, at some point to get my ribs adjusted . if I do come down we should try to meet-or if you ever come up to L.A.
I have tried to go back to work a few times and I get really bad flares, but I havent given up yet.
i have been on Lyrica for the past year and it definately helps me more than the Gaba and doesnt make me as spacey. i dont take very much though-also cannibis oil at night!! its legal here! It helps with bad pain and helps me sleep. Tumeric and Fish oil also.
BTW-Ocylyn has a website-"TOS society" that has some other O county practitioners listed. Massage therapists etc. Also Marc has seen some massage therapists and pilates instructers at A&A
Good Luck and Take Care of yourself,
jkl
Hi jkl! Great to hear from you too!! I haven't booked an appointment with Dr. A yet but will soon, was waiting for my insurance to kick in. I will definitely keep you posted and probably post on here on how that goes. I have no idea where PT will begin with me at this point. Shoot me an e-mail, would love to hear more about the injections I have already been thinking that is probably what I am going to need to do. I need to find a good Dr here for those, who do you see? Are you still seeing Dr. Jordan? I will probably come to LA sometime soon and wouldn't mind going there for a good doctor, will definitely let you know when that happens!

I'm sorry to hear about the flares and still being prevented from working but so glad to hear you haven't given up! I knew I would be getting myself worse by working but I just couldn't NOT work anymore. So I am dealing with it day by day.

Lyrica didn't work for me a while back. I have tried cannabis oil but haven't gotten the right amount of CBD in it. This was a while back then I stopped when I started interviewing for jobs. I will definitely look into it again. I cook a lot with turmeric but need to find a way to take it every day, it is so beneficial in so many ways.

I have been on the website and did find a PCP on there with TOS knowledge Dr. Evelyn Llorente. She is really close by I have an appointment with her in a couple of weeks.

Again, so great to hear from you! Take care and hopefully see you soon
__________________
Parbie

-6/20/14 Seroma Drainage Right Side

-7/18/13 Re-do of Right sided Supraclavicular Thoracic Outlet Decompression by Resection of Cervical Rib, First Rib, and Neurolysis

-8/30/12 Unsuccessful Right sided Supraclavicular Thoracic Outlet Decompression via Scalenectomy, Brachial Plexus and C2 through T1 Neurolysis, Resection of fibrous band attachment to Cervical Rib and Pectoralis Minor Tenetomy
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Old 05-08-2015, 01:42 PM #173
Akash Akash is offline
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Join Date: Jul 2014
Posts: 330
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Akash Akash is offline
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Join Date: Jul 2014
Posts: 330
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Originally Posted by parbie View Post
Yes, it was one of the first things I tried, even before my first surgery. It would only increase my symptoms. I tried again following my first surgery until I found out I needed a second one. I will do diaphragmatic breathing now but if I do it too long it still bring about my symptoms.
Sorry to hear this. I hope Ando works out for you. Fingers crossed and best wishes!
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Old 05-12-2015, 01:08 AM #174
parbie parbie is offline
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Join Date: May 2012
Location: Orange County
Posts: 188
10 yr Member
parbie parbie is offline
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Join Date: May 2012
Location: Orange County
Posts: 188
10 yr Member
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Originally Posted by Akash View Post
Sorry to hear this. I hope Ando works out for you. Fingers crossed and best wishes!
Thank you! I will post on how things go with Ando.
__________________
Parbie

-6/20/14 Seroma Drainage Right Side

-7/18/13 Re-do of Right sided Supraclavicular Thoracic Outlet Decompression by Resection of Cervical Rib, First Rib, and Neurolysis

-8/30/12 Unsuccessful Right sided Supraclavicular Thoracic Outlet Decompression via Scalenectomy, Brachial Plexus and C2 through T1 Neurolysis, Resection of fibrous band attachment to Cervical Rib and Pectoralis Minor Tenetomy
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