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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 11-11-2012, 10:18 AM   #91
Woodstock3
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parbie, I am sorry that your recovery is moving so slowly. From everything I have ready on here and on the TOS support group, a good PT is crucial in having a good outcome from surgery or helping in avoiding surgery. Just like you I have been seeing someone who has never treated TOS - and I am actually getting worse from the treatment. When I told them I wanted to avoid certain things, they got an attitude and said I had to push thru the pain. grrrr I have decided not to continue because being in painful flares for days is not worth it. I will continue my search which will mean driving a long distance (driving is not easy with TOS ) and I have also started learning the Alexander Technique. It has been very helpful with posture and movement. I hope you have finally found a PT who will help you get stronger. Best of luck to you in your recovery!

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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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parbie (11-16-2012)
Unread 11-16-2012, 12:26 PM   #92
parbie
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Quote:
Originally Posted by Woodstock3 View Post
parbie, I am sorry that your recovery is moving so slowly. From everything I have ready on here and on the TOS support group, a good PT is crucial in having a good outcome from surgery or helping in avoiding surgery. Just like you I have been seeing someone who has never treated TOS - and I am actually getting worse from the treatment. When I told them I wanted to avoid certain things, they got an attitude and said I had to push thru the pain. grrrr I have decided not to continue because being in painful flares for days is not worth it. I will continue my search which will mean driving a long distance (driving is not easy with TOS ) and I have also started learning the Alexander Technique. It has been very helpful with posture and movement. I hope you have finally found a PT who will help you get stronger. Best of luck to you in your recovery!
Thanks for the support Woodstock I am glad to say I have found a great new therapist. However, this week she saw I was improving (good news) but she got too excited and added new exercises which have flared me up Hopefully next week will go better. I will only be seeing her til Mid December and then I am moving again so time for another therapist! It sucks to keep switching especially after finding someone good but I spoke to several therapists over the phone who say they are familiar with TOS, my big requirement is also having that manual certification because I swear the manual work my current therapist has been doing has definitely helped me improve in a matter of 2 weeks. Good luck to you as well in finding a great therapist! PM me if you would like me to send the protocols I have and been using, I can attach them as docs via email and they may help your new therapist in better understanding how to treat you.
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Unread 02-19-2013, 02:14 AM   #93
parbie
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Default Update-Post op 5.5 months

So I haven't been on here to post updates in a while, sorry I guess life, pain, and my lack of improvement discouraged me from keeping my head up.

Anyhow, in the past 3 and a half months I can say I have backslid several times when I thought I might be getting better but I think a part of that has to do with my changing therapists and moving so much since surgery. I went to see Dr. Annest last month for my follow up and my winged scapula is gone. It's hard to see that as good news though since my symptoms have not really improved very much since surgery and I still have a lot of pain in my shoulder blade. The things that have improved are the numbness in my fingers and the sharp pain in my scapula. I still get both but not as often. However, I have a sharp squeezing pain in my neck right where my brachial plexus is and also my pec minor. The pain is a different kind than what I had before surgery. I still have a lot of stiffness and pain in my upper back and shoulder and especially in my upper arm. Also, still pain in my fingers but that has decreased a bit.

Ok I have a lot more to say but the pain is bad today, will be back to post more later!
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Unread 02-19-2013, 01:00 PM   #94
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Have you explored the site below? (& her book is often in libraries)
Book - Conquering Carpal Tunnel Syndrome and Other Repetitive Strain Injuries- by Sharon Butler has very good stretches for all RSI /TOS with info on posture causes and corrections. She has detailed stretching ideas to gently coax the damaged tissues to release-not to force them.
her website: www.selfcare4rsi.com
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Unread 02-19-2013, 11:13 PM   #95
Iris
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[can you get to ct for pt? She is about an hour from NYC.



QUOTE=parbie;958421]So I haven't been on here to post updates in a while, sorry I guess life, pain, and my lack of improvement discouraged me from keeping my head up.

Anyhow, in the past 3 and a half months I can say I have backslid several times when I thought I might be getting better but I think a part of that has to do with my changing therapists and moving so much since surgery. I went to see Dr. Annest last month for my follow up and my winged scapula is gone. It's hard to see that as good news though since my symptoms have not really improved very much since surgery and I still have a lot of pain in my shoulder blade. The things that have improved are the numbness in my fingers and the sharp pain in my scapula. I still get both but not as often. However, I have a sharp squeezing pain in my neck right where my brachial plexus is and also my pec minor. The pain is a different kind than what I had before surgery. I still have a lot of stiffness and pain in my upper back and shoulder and especially in my upper arm. Also, still pain in my fingers but that has decreased a bit.

Ok I have a lot more to say but the pain is bad today, will be back to post more later![/quote]
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Unread 02-24-2013, 08:31 PM   #96
parbie
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Default Update continued

Hi all,

So to continue, Dr Annest mentioned that scar tissue and myofascial pain may be causes for my continued pain but he said he can't be sure unless he went in. I am currently back in N Cal and am seeing Dr Ellis who is still recommending heparin injections which I discussed with both Annest and Sanders. They both said if there is not much of a risk, I should give it a shot given the severity of my symptoms even after surgery. I've decided to give physical therapy more time because it took me some time to find the right therapist here who can combine Edgelow's breathing with manual therapy.

I am seeing a therapist who runs his own practice and has been a yogi for 30 years. He's not afraid to go near the sensitive areas other therapists have been and has me doing very simple vinyasa style yoga poses combined with diaphragmatic breathing. The daily exercises are helping temporarily but once I use my arms too much doing pretty much anything the pain comes rushing back. I am sort of at the acceptance stage that I need to find a way to live with the pain and limitations and still try to pursue my career and goals somehow. My therapist is very confident he can get me much better which helps and is motivating me the most. However, I'm not sure if he knows how to work on mobilizing scar tissue which I may have developed, is anyone familiar with ways to work on that? I am also thinking of going down to Anaheim hills soon to see Ando for an evaluation given other TOSers success with him.

One thing I have learned through this process is that even though I thought I picked the best surgeon for me, I was pretty disappointed in my follow up conversations and meeting with him, as I feel like he is simply pushing me off to another dr since the surgery (as we can tell so far) did not help. He seemed a lot more concerned with the long thoracic nerve healing (an injury he caused during surgery) than with finding options to address my existing issues. Both him and Ellis seem to think I will have to stay on my meds for life and I was very unhappy to hear that as I am taking several very strong meds that I do not want to be on long term.

Anyway, that is my update, I wish I had more positive news. Hopefully, during the next few weeks of therapy I may improve (fingers crossed) as long I try my best to stay positive and stay on top of my exercise as well as watch my physical limitations.
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Unread 02-24-2013, 08:33 PM   #97
parbie
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Quote:
Originally Posted by Iris View Post
[can you get to ct for pt? She is about an hour from NYC.



QUOTE=parbie;958421]So I haven't been on here to post updates in a while, sorry I guess life, pain, and my lack of improvement discouraged me from keeping my head up.

Anyhow, in the past 3 and a half months I can say I have backslid several times when I thought I might be getting better but I think a part of that has to do with my changing therapists and moving so much since surgery. I went to see Dr. Annest last month for my follow up and my winged scapula is gone. It's hard to see that as good news though since my symptoms have not really improved very much since surgery and I still have a lot of pain in my shoulder blade. The things that have improved are the numbness in my fingers and the sharp pain in my scapula. I still get both but not as often. However, I have a sharp squeezing pain in my neck right where my brachial plexus is and also my pec minor. The pain is a different kind than what I had before surgery. I still have a lot of stiffness and pain in my upper back and shoulder and especially in my upper arm. Also, still pain in my fingers but that has decreased a bit.

Ok I have a lot more to say but the pain is bad today, will be back to post more later!
[/quote]

I am in N Cal, permanently have moved from NYC, but thank you Iris.
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Unread 02-24-2013, 08:34 PM   #98
parbie
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Quote:
Originally Posted by Jo*mar View Post
Have you explored the site below? (& her book is often in libraries)
Book - Conquering Carpal Tunnel Syndrome and Other Repetitive Strain Injuries- by Sharon Butler has very good stretches for all RSI /TOS with info on posture causes and corrections. She has detailed stretching ideas to gently coax the damaged tissues to release-not to force them.
her website: www.selfcare4rsi.com
Hi Jomar,

I had explored Sharon Butler's site before surgery but it might be a good idea for me to check it out now. Thanks!

Parbie
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Unread 02-24-2013, 10:54 PM   #99
Iris
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I am in N Cal, permanently have moved from NYC, but thank you Iris.[/quote]

Oh gosh. I am so sorry to hear that you are having such a tough time
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Unread 03-19-2013, 11:49 AM   #100
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Parbie,

I am glad you are thinking of going to see Art in So Cal. You can make an appointment with James there at Ando and Aston as well,James is an orthopedic specialist and he is very good at mobilizing the pec minor related tightness. Art is also good at ribwork and is a master at evaluating. Art has developed some good exercises for us TOS ers. Its worth giving it a try. Everyone's body is different. It might be the right fit for you. My first therapist told me " The road to good health is not straight" and it has been so true in my case. I am back in the country, I am off my meds and am currently conditioning and strengthening 3 years after my surgery. please feel free to email me if I can be of any help.

Good luck,
Stos2
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