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


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Old 05-05-2012, 07:19 PM #11
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I am curious about them. I think he is one of the only dr's doing them.Dr. Jordan says it is outdated and that botox is the more accepted and proven method. the literature does endorse botox, I havent seen anything written about heparin except by dr. Ellis.

In my case the botox did not work for any length of time so I would be interested also if anyone has tried the heparin and also in possibly taking a trip up to the bay area to see him and whoever took over for Dr. Edgelow. Do you know how to order the Edgelow Protocol?

Dr. Ellis also wrote an article with Dr. Stoney about the value of scalenectomy without Rib Resection. I would definately go see him if you are in the bay area.
Peter Edgelow has trained Steve for about 12 years at the Hayward office where he practiced. I haven't seen Steve yet, only because I am stuck in Edgelow's core program in a certain limited range even though, that is the only thing that still helps me now.

Peter also believes that my lymph nodes are not draining well and that is why I have some of the pain (ties in with the edema and inflammation that some of you talk about). His spinal mobility exercises are the ones that I can't really do without pain and that is why my lymph nodes don't drain properly. His philosophy is also that you must be able to do his protocol without any pain.

It would be worth your while to come to the Bay area only if your doctor thinks so too. It's a long term commitment and it does not work for everyone. But some people who can do his whole program, do amazingly well. His kit can be ordered online from Santa Rosa, but I would only do it with the guidance of a therapist who is trained under Peter and can fine tune it to suit you.
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Old 05-05-2012, 08:42 PM #12
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I had surgery on my left sides 7 and 1/2 years ago with Dr. James Avery in SF. Unfortunately, I am worse following surgery.

I also had a heparin injection with Dr. Ellis. Initially it really worsened my headache then things calmed down after a few days. I didn't notice any improvement in symptoms.

Take care,
Kelly
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Old 05-06-2012, 01:36 PM #13
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I had surgery on my left sides 7 and 1/2 years ago with Dr. James Avery in SF. Unfortunately, I am worse following surgery.

I also had a heparin injection with Dr. Ellis. Initially it really worsened my headache then things calmed down after a few days. I didn't notice any improvement in symptoms.

Take care,
Kelly
Kelly,

Thank you so much for sharing your experiences with Docs.It really helps me a lot.

I am sorry to hear surgery did not help you. Did you have a scalenectomy or a rib resection?

Last edited by stos2; 05-06-2012 at 01:38 PM. Reason: grammar
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Old 05-06-2012, 03:47 PM #14
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Anyone been seen and treated by Dr. Robert Thompson of WUSTL at Barnes Jewish, St. Louis?[/B]
I have an appointment with him coming up in June 2012.
I am a bilateral Arterial TOS patient. Only scalenectomies done in 2002(right)and 2010(left) both by same vascular surgeon. My right is still doing good, but having issues with the left side. After 10 months post surgery symptoms started developing again. Left pects very tight. Symptoms come and go with change in posture and position.I might be neural too on the left side, I am thinking...

Curious to know if anyone has seen him?
I'm seeing him on may 30th. I'll let you know what I find out. His secretary Della is one of the nicest people I've ever talked with. Gives me hope that he'll be a good one. I have seen Dr Donahue in ma. He's great but just too far for me to travel.

Jess
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Old 05-07-2012, 12:21 PM #15
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I'm seeing him on may 30th. I'll let you know what I find out. His secretary Della is one of the nicest people I've ever talked with. Gives me hope that he'll be a good one. I have seen Dr Donahue in ma. He's great but just too far for me to travel.

Jess
Thank you so much, please keep in touch and let me know. Della just confirmed my appointment with him on June 20th. I am looking forward to hearing from you after you see him. Can you please tell me about your condition and symptoms in short?
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Old 05-07-2012, 12:31 PM #16
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Thank you so much, please keep in touch and let me know. Della just confirmed my appointment with him on June 20th. I am looking forward to hearing from you after you see him. Can you please tell me about your condition and symptoms in short?
Not sure of my type. I have the usual symptoms. Pain, tightness, loss of motion, tingling, no swelling but lots of dizziness. Dr. Donahue diagnosed me in just a few minutes. He did a few tests to confirm. I've been seeing a masseuse since my pain started last June. She has helped me stay mostly functional. But it is working less and less. I'll keep you updated.

Jess
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Old 05-07-2012, 12:42 PM #17
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I'm seeing him on may 30th. I'll let you know what I find out. His secretary Della is one of the nicest people I've ever talked with. Gives me hope that he'll be a good one. I have seen Dr Donahue in ma. He's great but just too far for me to travel.

Jess
His Post OP Care is HORRIBLE. Please consider this when considering a surgeon. You will see him for the surgery, and never again. My advise (do what you want with it) Run in the opposite direction as fast as you can before he takes your money and does the same.
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Old 05-08-2012, 11:37 AM #18
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His Post OP Care is HORRIBLE. Please consider this when considering a surgeon. You will see him for the surgery, and never again. My advise (do what you want with it) Run in the opposite direction as fast as you can before he takes your money and does the same.
Do you mean Dr. Donahue"s Post Op care or Dr Thompson's? Please verify.
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Old 05-08-2012, 02:43 PM #19
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His Post OP Care is HORRIBLE. Please consider this when considering a surgeon. You will see him for the surgery, and never again. My advise (do what you want with it) Run in the opposite direction as fast as you can before he takes your money and does the same.
I appreciate the warning. Unfortunately he may be my only option. I live in central Indiana. I do not have the money to travel. I can only hope that it works out ok. Is there anyone else in the Midwest? I am not planning on surgery. I like my muscles where they are. But I am open to suggestions.
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Old 05-10-2012, 11:59 AM #20
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His Post OP Care is HORRIBLE. Please consider this when considering a surgeon. You will see him for the surgery, and never again. My advise (do what you want with it) Run in the opposite direction as fast as you can before he takes your money and does the same.
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Do you mean Dr. Donahue"s Post Op care or Dr Thompson's? Please verify.
Stos2: You asked me about this in another thread. Tossucks means Thompson. It's only an opinion, backed by fact, so it's a darn good one. Personally, I would not travel to see him. Save your money!
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