Actually, I've had TOS for so many years, that I think my whole nervous system is out of whack. It's kind of hypersensitive to everything. My body really hasn't responded well to surgeries in the past.
Good luck on Thursday. I hope it goes well for you.

One of my doctors (not TOS surgeon) thinks I may have "hyperactive sympathetic nerves" from all of this. He said it is very difficult to treat. He has suggested a spinal cord stimulator but I have not seen where those have helped too many people. Has anyone else been told that about sympathetic nerves or have any insight into it?

Romans8, sorry to hear of your latest problems. What kind of symptoms does your doctor attribute to the sympathetic nervous system?

This new TOS textbook has some discussion of complex regional pain syndrome and its connection to TOS: http://www.amazon.com/Thoracic-Outle...utlet+syndrome

Amazon allows you to search inside the book to see some of the text.

There are a number of references to CRPS in the TOS book. Also, one chapter by Dr. Donahue "Complex Pain Syndrome and NTOS." And another "Postoperative Complex Regional Pain Syndrome" by Rahul Rastogi MD. I just got the book and haven't yet had a chance to read it.

romans8

My doctor (not the surgeon) explained to me that my symptoms are a result of the trauma from the surgeries (3 in one month for TOS and 2 chyle lymph leaks) which caused several post op issues and definitely scar tissue at the surgical site. The complications of nerve damage to the phrenic nerve has caused breathing issues, the damage to the nerve that resulted in Horner's syndrome in the left eye (surgical side) is still evident and will not improve. The fatigue, nausea & light headedness is ongoing after almost 3 years and the nerve pain has become body wide and is worse at sleep which is when my symptoms seem to escalate.......My doc explained that the pain receptors in the brain became "over sensitized" due to the "over stimulation" of the nerves and the brain created a "memory" to this increased pain.
I asked if this could be possibly Fibromyalgia and he said that it was....In researching this through Mayo Clinics site, it does sound like it could be.
Hoping the Meds and the recommendation of Massage Therapy will improve and manage the pain.

Not sure all of your symptoms however you might want to research the fibromyalgia sites.

chloecasey

P.S. came across website....www.fmpartnership.org that has current info that might be of help for you and others

Could he be thinking of CRPS/RSD?
(Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS))
http://neurotalk.psychcentral.com/forum21.html

Some of our long time members w/ TOS developed RSD/CRPS also..
No one recently has mentioned the combination of dx's so I didn't bring it up.
Many would get a dx of fibromyalgia also.

Did you have any expert TOS PT at all post op?
*Oh I see in another post that it was your son that had the surgery?*

Unfortunately sometimes surgery doesn't fix the pain problem.. your doctors or surgeons should know that and advised you of the percentages , now they should give you a referral to pain management..
(if TOS expert PT doesn't help)

But I'd really try expert PT and/ or expert chiropractor, bodywork, therapeutic massage before going on meds only. And try many of the self care tips that we have posted on the forum.


If you'd like to make a thread for yourself /son with more information on symptoms/pain here is the link to do so -
http://neurotalk.psychcentral.com/ne...newthread&f=24

Recently, I came across articles about Fibromyalgia, as I have been experiencing ongoing pain since Thoracic Outlet surgery that has traveled body wide. I thought i would share that those of us who have ongoing pain especially in the neck and have been told it could be Fibromyalgia that there is a condition called "positional cervical cord compression" that shares similar symptoms of Fibro and that it is thought that it can be the cause of the pain due to extension of the neck back that causes "irritation to the spinal cord".
If anyone is interested in these articles, look up "Positional Cervical Cord Compression" by author Andrew Holman, MD

Kelly,
Given that I can use and raise my arm he feels the motor nerves are not as affected as the sympathetic nerve fibers which are the ones that transmit pain according to him. I do not have fibro. All of my problems are isolated to an area the size of a football in the lower neck, shoulder and scapula. I do not understand RSD so I can't say if it's this. All I know is I carried this condition in this area for almost 10 years with it getting worse and worse over time. I had TOS surgery within a year of first being diagnosed with or ever hearing about TOS. It gave significant, immediate relief that none of the spine or shoulder surgeries gave me. This wonderful time did not last but a few months before pain started back in the neck and crept back to the shoulder and scapula within a year post-op. I understand this is not uncommon.

I was supposed to go back to Dr. Pearl a couple of weeks ago but my flight was cancelled and I had to postpone until January. I have not been back to see him since the surgery and do not really put much faith into what any of the local doctors tell me as they do not understand TOS. I expect to be told I have scarred as my post-op report from the original surgery said I had a lot of scarring and fibrous bands requiring neurolysis in addition to the rib and scalene removal. I think the rib removal gave me great benefit but the scalene removal has not set well with my body. My scapula and shoulder pains are not as intense as before the surgery and I could live with those. However the surgery tore my neck up and I have extremely limited range of motion to one side. It feels like soft tissue has reattached and is strangling a nerve or group of nerves. I hurt to the touch everywhere in the concave area above the collar bone, across the top of my trap and where my scalenes use to be. So the bottom line is the surgery gave me partial improvement in the shoulder and scapula but significant worsening of the right side of neck.

What is also interesting is I had a frozen shoulder on my left side going into the surgery with some milder TOS symptoms. Physical therapy has cleared all this up and my left side only gives me minimal problems now whereas I expected to be facing TOS surgery on that side.

A lifelong battle. Have to focus on what is good in life and what will be very good when this life is over.