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

My TOS Surgeon Search on the East Coast

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Unread 10-27-2012, 05:21 PM   #81
irisheyesmilin
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Default Questions about replying etc and Dr. Donahue

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Originally Posted by Limoges View Post
Parbie, that's a good question. My anterior scalene muscle was removed completely. 30+ years of tightness and unrelieved aching gone instantly. The medial scalene was not touched or removed because it wasn't causing problems. My surgeon was Dr. Dean Donahue (MGH/Harvard Medical School). He's as nice and humble as he is smart and skilful!
Hi Limoges,
I'm not sure if it was you that I replied to already. I'm confused about the procedures here. If I send you a reply how do I know when you reply back to me. Where do I go to look for it? I wanted to talk to you because I've seen that you had TOS for 30 yrs plus and used Dr. Donahue. I have seen Dr. Donahue and have had TOS about 35 yrs. I've been looking around on the site and happy that I have found so much information. Hope to hear from you soon.

irisheyesmilin
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Unread 11-03-2012, 08:32 PM   #82
parbie
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Parbie,

I am so sorry you have had to go through so much. What is commendable is that I feel a very positive tone in your whole post here inspite of all the difficulties you have gone through. Moving is no small matter, specially after surgery. You are a trooper!

You are right about the recovery process, it truly takes 6 months to a year to fully recover. Those nerves take the longest. Please, don't hurry into your second surgery till you are almost better on your surgery side.

Keep up the positive attitude, and wish for a really good therapist from your heart and it will happen. Please email us or post on the forum,when you need extra support. We are all always here for our fellow friends. sending you a big hug and good wishes your way.
Thanks for the support, I really appreciate it. I am still trying to stay positive however it's very hard some days and I'm almost ready to give up so when I feel that way I come back to this forum and it really helps. I found a new therapist and saw her last week it was just an initial consult, and like every other therapist that I've seen she seemed a little overwhelmed when I told her about my history. She had me do some tests some of which involved raising my arm so i was in quite a bit of pain after the appointment. But she does seem to know about tos and is willing to follow the protocol that I gave her. I'll be seeing her twice a week so let's see how my next weeks appointment goes. She wants me to continue following the same instructions I was given by Susan. All she added for now was to do some posture exercises 3 times a day.

I am just concerned because I've been doing the same thing for the past 2 months and have not improved very much and I feel like I'm getting worse some days. I think that sometimes the pain I'm having is still post surgical I thought that pain usually did not last this long, am I wrong about that? I do know that my winged scapula is definitely a big part of the problem. I've been told by a couple of different therapists that it is weakening my shoulder very much and will make my recovery even longer. I am supposed to begin looking for a new job soon but I am also worried that going to work when I am not ready, I might push myself back further and getting understanding from a new employer about my limitations might be even more difficult than it was with my current one. Anyway, still trying to take it day by day, hopefully my symptoms will improve with more time and patience.
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Unread 11-03-2012, 08:38 PM   #83
parbie
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Parbie: Geez, you've been through a lot and then some. I hope things settle down and you can move ahead on the road to recovery.

If you get a chance to check-in, I'd love to know what exercises Susan has given you. Did she do manual therapy as well on you? Did she keep to the Edgelow Protocol or have her own take on things? I gave her a call this week, but haven't heard back yet. Going to try again today.

Thank you and wish you the best.
Hey Anne, thank you for the well wishes and sorry for the late response. If you haven't heard back from her or still need info please send me a pm with your e-mail and I will e-mail you my current Pt regime on a word doc.

Last edited by parbie; 11-03-2012 at 08:40 PM. Reason: double quoting
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Unread 11-06-2012, 09:20 PM   #84
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Parbie, hope this new therapist works for you. Wish you good luck in your recovery!
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parbie (11-10-2012)
Unread 11-07-2012, 01:31 AM   #85
CANDIE66
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Thumbs up East Coast Surgeon Search

Hi All
I just wanted to share a Dr with you. I have Right sided True Nuerogenic TOS. I am 6 weeks post op. I did not have a rib resection. I had a Scalenectomy and scraping the brachial and surroundibg area of scar tissue. He also cleared C1 _ C5 so there is no obstruction going through the brachial plexus. I have a 5 inch insicion above my clavical bone. I am very pleased with the scar so far. The surgeon glued it and it really is not very noticable. I was undiagnosed for two n half years saw many many drs before TOS dx and after dx to confirm. My surgeons name is Dr Lee Osterman. He comes highly recomended and has many years experience. He also has a great bed sde manner as well as his team theners well as his team. He also took the time to comfort my family after surgery as the surgeryy took a very long time. He is associated with The Philadelphia Hand Center. They have many office through out the Philadelphia area, delaware County Pa and King of Prussia Pa. I do not regret the surgery at all and I am glad I did it. I jyst thought I would share and bezt of luck to everyone n stay strong..
Peace light n love
Candie

I apoligize for any typos
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NerPain4 (11-21-2012), nospam (11-09-2012), olecyn (07-13-2013), Woodstock3 (11-11-2012)
Unread 11-09-2012, 12:41 AM   #86
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Thanks Candie...good luck with your recovery.
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Unread 11-09-2012, 08:06 AM   #87
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Thanks Candie...good luck with your recovery.
. YW Marc ... Thank You...
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Unread 11-10-2012, 07:30 PM   #88
parbie
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Originally Posted by CANDIE66 View Post
Hi All
I just wanted to share a Dr with you. I have Right sided True Nuerogenic TOS. I am 6 weeks post op. I did not have a rib resection. I had a Scalenectomy and scraping the brachial and surroundibg area of scar tissue. He also cleared C1 _ C5 so there is no obstruction going through the brachial plexus. I have a 5 inch insicion above my clavical bone. I am very pleased with the scar so far. The surgeon glued it and it really is not very noticable. I was undiagnosed for two n half years saw many many drs before TOS dx and after dx to confirm. My surgeons name is Dr Lee Osterman. He comes highly recomended and has many years experience. He also has a great bed sde manner as well as his team theners well as his team. He also took the time to comfort my family after surgery as the surgeryy took a very long time. He is associated with The Philadelphia Hand Center. They have many office through out the Philadelphia area, delaware County Pa and King of Prussia Pa. I do not regret the surgery at all and I am glad I did it. I jyst thought I would share and bezt of luck to everyone n stay strong..
Peace light n love
Candie

I apoligize for any typos
Thanks Candie. I had the same things done during my surgery and same diagnosis except I have bilateral cervical ribs so my surgeon took out the fibrous band compressing my brachial plexus as well. How are you doing so far with your recovery? Mine is going very slow and I'm attributing it to my traveling but most of all my injured long thoracic nerve (from surgery).
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Unread 11-10-2012, 07:48 PM   #89
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Default Update 10 weeks post op

So I have realized even more that I was seeing a therapist who made me worse rather than better for 4 weeks and it really sucks that I didn't realize it sooner. When I asked him to not touch my pec area or scalenes/brachial plexus area anymore because Dr Annest said he needs to back off due to my high sensitivity, he did not react well and thought everything he was doing was right.

Regardless, I now have a new therapist and she is great so far. She is very willing to follow the 3 protocols I gave her (Denver, Edgelow, and Ando). She is just taking what she believes will help my individual case from each and applying it and although she does not specialize in TOS she seems to know enough and is also manually certified (hard to come by in my area). She has been doing joint and rib mobilization so far and it seems to be helping but I still flare up whenever doing any activity for too long afterwards.

The nerve glides I have been doing at home I feel are not helping at all, her recommendation was to continue with them but be very very aware of my neural tension even if it means moving my arm/hand/wrist very slightly. The edgelow breathing is also getting worse rather than better for me and I can't seem to figure out why. I sometimes cannot do more than 5 mins of it. I am continuing with heat and ice, neural desensitization as my brachial plexus that entire area of my neck still seems to be pretty fired up, and of course continuing my meds and using a new lipoderm cream. I am still having lots of pain in my pec minor area and my neck, especially near my occipital nerve area as well but the joint mobilization helps with that. My shoulder blade (winged scapula) as well as my shoulder joint area also are painful. Massage of my shoulder blade and upper back help. But my shoulder I have a feeling is due to my labral tear. My left side is becoming more symptomatic, I thought it was better after surgery, but maybe its because my right side was/is so bad, I didn't notice the left as much. My therapist thinks it is a result of my overuse of that arm as well as her mobilizing my ribs, which hasn't been done since before surgery. Ok more than enough typing but I think I covered everything!
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Unread 11-11-2012, 10:10 AM   #90
Woodstock3
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Candie, Thanks for the info about Dr. Osterman. I am happy to hear your recovery is going so well. I also saw a Neurosurgeon at University of PA. He also does the type of surgery you had done. He told me to exhaust all options before having the surgery - which I am doing now. I think if i could find a good PT I could make some progress. Wishing you continued success with your recovery!!

Quote:
Originally Posted by CANDIE66 View Post
Hi All
I just wanted to share a Dr with you. I have Right sided True Nuerogenic TOS. I am 6 weeks post op. I did not have a rib resection. I had a Scalenectomy and scraping the brachial and surroundibg area of scar tissue. He also cleared C1 _ C5 so there is no obstruction going through the brachial plexus. I have a 5 inch insicion above my clavical bone. I am very pleased with the scar so far. The surgeon glued it and it really is not very noticable. I was undiagnosed for two n half years saw many many drs before TOS dx and after dx to confirm. My surgeons name is Dr Lee Osterman. He comes highly recomended and has many years experience. He also has a great bed sde manner as well as his team theners well as his team. He also took the time to comfort my family after surgery as the surgeryy took a very long time. He is associated with The Philadelphia Hand Center. They have many office through out the Philadelphia area, delaware County Pa and King of Prussia Pa. I do not regret the surgery at all and I am glad I did it. I jyst thought I would share and bezt of luck to everyone n stay strong..
Peace light n love
Candie

I apoligize for any typos
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