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


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Old 11-12-2012, 06:46 PM #61
irisheyesmilin irisheyesmilin is offline
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Default what to ask Dr. Donahue on my Dec. 3, visit

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Originally Posted by Limoges View Post
I had another appointment with Dr. Donahue yesterday and I'm doing great. I find a lot of my visits are spent asking about some of the things I read on this board, and Dr. Donahue is great at addressing the loads of misinformation being passed around.

Scar tissue and adhesions are not preventable. Our bodies are programmed to heal themselves and they do so by producing scar tissue. Some people are predisposed to making more scar tissue than others (those that produce keloids, for example), but there's no way to stop it. He said he has never had to reoperate on someone who developed so much scar tissue that it hurt the positive effects of surgery. Doing too much after surgery is worrisome because you could overstretch nerves or otherwise damage them, but scar tissue does NOT cause problems. I will continue to do gentle range of motion stretches as I heal over the course of the next year or so.

The idea that you can simply pick a surgeon and ask him/her to operate on you is also sort of horrifying to me. Anyone who gives you a sales pitch, or is ready to operate on you regardless of whether or not they think surgery will actually help, is someone you should run away from. Dr. Donahue will not operate unless he is quite sure that surgery will benefit a patient. There are no guarantees, of course, but his vast experience has given him a pretty good idea of who will and will not be a good candidate for surgery. Also, there are lots of things that can't be seen on various imaging techniques. Apparently it takes getting into that area surgically to actually see certain problems.

A doctor's credentials actually DO matter. You want a surgeon who has a high success rate and who does a lot of these surgeries.

Another thing that I find worrisome is that for the over 30 years I suffered from TOS, a lot of my pain was the result of nerve impingement from my c-spine over the damaged rib. My scapula hurting was the result of nerve pain elsewhere, as were many other symptoms. I had a doctor at MIT give me shots in my scapula and neck because that's where the pain was. It was NOT where the pain was coming from and was a horrible idea.

Ok, off my ergonomic soap box for now! Sending good thoughts for less or no pain to all of you.
Limoges

I hope I am doing the right thing to talk to you. I have an appt w/Dr. D Dec.3 2013 and wondered....did you have the terminology down when you asked him about what was wrong with you. I believe I have bilateral tos. My scapula, back, clavical area, shoulders to fingertips have nerve pain/dull aches, numbness and pins/needles. I have looked up the brachial plexus/scalene etc and all fit the problem, any suggestions about how to address the tos? I don't know when or where to look for your reply, but I am trying to go thru the instructions to find out, lol.
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Old 04-21-2013, 05:35 PM #62
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Default thanks Blurto

I am living proof of the problems that scar tissue can cause. The pain and burning is unreal that I have. As a surgical RN i have seen scar tissue and adhesion up close. That tissue is so tough, much tougher than a disc fragment. So it should not be hard to believe that scar tissue binding the nerve root would cause significant pain. Ive had two surgeried in the past year on my lumbar spine. I have chronic pain. I just had an appointment with a neurosurgeon at cleveland clinic and she informed me that I have much more scar tissue than the norm. Then I ask all of you, what is the norm? The text book version of what each of our bodies should be. I think all health care professionals can agree that each individual and each case is unique. To say that scar tissue can NOT cause problems is unreasonable. We all need to keep an open mind to all possibilities so that our input can be of help to each other.
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Old 04-21-2013, 08:45 PM #63
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I am living proof of the problems that scar tissue can cause. The pain and burning is unreal that I have. As a surgical RN i have seen scar tissue and adhesion up close. That tissue is so tough, much tougher than a disc fragment. So it should not be hard to believe that scar tissue binding the nerve root would cause significant pain. Ive had two surgeried in the past year on my lumbar spine. I have chronic pain. I just had an appointment with a neurosurgeon at cleveland clinic and she informed me that I have much more scar tissue than the norm. Then I ask all of you, what is the norm? The text book version of what each of our bodies should be. I think all health care professionals can agree that each individual and each case is unique. To say that scar tissue can NOT cause problems is unreasonable. We all need to keep an open mind to all possibilities so that our input can be of help to each other.
RachelRN

I agree.....my nerve pain definitely has been caused by scar tissue and it makes me angry when you are told that what you are experiencing is just shrugged off as being not real.
Mine was caused by initial surgery for TOS that resulted in complications that required not only one re-exploration but two for chyle lymph leaks that would not resolve on their own. So, 3 surgeries within the same surgical incision really "messed" with all of the nerves.
It is difficult to have others understand what you are experiencing when there is no "visual" signs on the outside but it is so real!

It is important for everyones input ....it can lead to some answers that could be of great help.
What information were you able to get from your appointment with the Neurosurgeon?

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Old 04-25-2013, 11:17 PM #64
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Quote:
Originally Posted by RachelRN View Post
I am living proof of the problems that scar tissue can cause. The pain and burning is unreal that I have. As a surgical RN i have seen scar tissue and adhesion up close. That tissue is so tough, much tougher than a disc fragment. So it should not be hard to believe that scar tissue binding the nerve root would cause significant pain. Ive had two surgeried in the past year on my lumbar spine. I have chronic pain. I just had an appointment with a neurosurgeon at cleveland clinic and she informed me that I have much more scar tissue than the norm. Then I ask all of you, what is the norm? The text book version of what each of our bodies should be. I think all health care professionals can agree that each individual and each case is unique. To say that scar tissue can NOT cause problems is unreasonable. We all need to keep an open mind to all possibilities so that our input can be of help to each other.
I am another example as scar tissue caused a recurrence of my neurogenic symptoms less than a year after rib resection surgery. I am praying that my improvement will be permanent this time around. I am taking a low-dose steroid in an attempt to control inflammation and mitigate more scarring.

My recent neurolysis procedures have not been anywhere near as traumatic as my rib resections (w/neurolysis).
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Old 05-26-2013, 06:10 PM #65
irisheyesmilin irisheyesmilin is offline
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Help the one exercise give post op

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Originally Posted by Limoges View Post
Hospitals are one of the most likely places to get staph. That's common knowledge I thought.
Hi Limoges,

I was wondering. Dr. Donahue told me there would be one exercise he wanted me to do for one year, 365 days. Otherwise he's not (paraphrasing) that keen on PT. Can you share with me the exercise he gave you.
Thanking you in advance, I remain.

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Old 05-26-2013, 08:06 PM #66
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Has Dr d. Ever mentioned what he would consider doing a reoperation for? IM 14 MOS. POSTOP W/Dr. Donahue. Thanks for any info.
Quote:
Originally Posted by Limoges View Post
I had another appointment with Dr. Donahue yesterday and I'm doing great. I find a lot of my visits are spent asking about some of the things I read on this board, and Dr. Donahue is great at addressing the loads of misinformation being passed around.

Scar tissue and adhesions are not preventable. Our bodies are programmed to heal themselves and they do so by producing scar tissue. Some people are predisposed to making more scar tissue than others (those that produce keloids, for example), but there's no way to stop it. He said he has never had to reoperate on someone who developed so much scar tissue that it hurt the positive effects of surgery. Doing too much after surgery is worrisome because you could overstretch nerves or otherwise damage them, but scar tissue does NOT cause problems. I will continue to do gentle range of motion stretches as I heal over the course of the next year or so.

The idea that you can simply pick a surgeon and ask him/her to operate on you is also sort of horrifying to me. Anyone who gives you a sales pitch, or is ready to operate on you regardless of whether or not they think surgery will actually help, is someone you should run away from. Dr. Donahue will not operate unless he is quite sure that surgery will benefit a patient. There are no guarantees, of course, but his vast experience has given him a pretty good idea of who will and will not be a good candidate for surgery. Also, there are lots of things that can't be seen on various imaging techniques. Apparently it takes getting into that area surgically to actually see certain problems.

A doctor's credentials actually DO matter. You want a surgeon who has a high success rate and who does a lot of these surgeries.

Another thing that I find worrisome is that for the over 30 years I suffered from TOS, a lot of my pain was the result of nerve impingement from my c-spine over the damaged rib. My scapula hurting was the result of nerve pain elsewhere, as were many other symptoms. I had a doctor at MIT give me shots in my scapula and neck because that's where the pain was. It was NOT where the pain was coming from and was a horrible idea.

Ok, off my ergonomic soap box for now! Sending good thoughts for less or no pain to all of you.
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Old 05-26-2013, 11:06 PM #67
16rhonda 16rhonda is offline
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Quote:
Originally Posted by irisheyesmilin View Post
Hi Limoges,

I was wondering. Dr. Donahue told me there would be one exercise he wanted me to do for one year, 365 days. Otherwise he's not (paraphrasing) that keen on PT. Can you share with me the exercise he gave you. Fla i
Thanking you in advance, I remain.

Irisheyesmilin
Hi there, Dr. Donahue gave me 3 wall & 3 neck ex. to do 3x day for 1yr. Postop. I was pretty consistant but did skip a few x occassionally.
I'm 14mos postop c-rib, 1st rib, scalenectomy n neuroplasty. Recent increase n scapula, rib, clavicle pain & soreness. Don't. Know why only thing I can think of is I was taking a 1hr. TaiChi class (had lot of overhead arm MOVEMENTS) in march &2nd to last class pain started.. feels like pain in lung worse with deep breathing. Miserable!
Have u had surgery yet?
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Old 05-27-2013, 11:34 AM #68
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Limoges doesn't post here anymore. You can try sending her a Private Message.
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Old 05-27-2013, 01:06 PM #69
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Looking at the similar threads at the bottom of this page, I came across Scar tissue after surgery.

http://www.back-pain-info.com/back-p...technique.html

The Racz procedure is for scar tissue post spinal surgery (which I suspect I have). It appears to include enzymatic therapy. Several people have recommended oral enzymatic therapies to me to mitigate post surgical scarring. Products like Vitalyzm (too expensive) and Wobenzym N claim to be of benefit. I am trying Wobenzym (with my doctor's awareness) and haven't noticed any side effects (other than a light wallet) so far.
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Old 05-27-2013, 07:43 PM #70
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Has Dr d. Ever mentioned what he would consider doing a reoperation for? IM 14 MOS. POSTOP W/Dr. Donahue. Thanks for any info.
Hi 16rhonda,
I am seeing Dr. D soon (9 days) and am very likely having a re-operation. You will see in my signature the surgery I had done, it was 10 months ago and I have gotten worse and am continuing to worsen as more time passes and my other side is also getting worse (unoperated side). I believe my pain to be from scar tissue and the lack of c-rib or first rib resections. So Dr. D said if he were to do my redo he will take those both out 100%. Hope that helps.
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-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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