Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Thoracic Outlet Syndrome

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

Don't know where to begin help please

Reply
Thread Tools Display Modes
Unread 02-17-2013, 02:29 AM   #1
Pattymary88
Junior Member
 
Join Date: Feb 2013
Posts: 37
Default Don't know where to begin help please

I guess I should start with my history. I have some unknown condition that causes me to have entrapped nerves. I have had four in my left foot, bilateral carpal tunnel, rt arm ulnar nerve, rt arm radial nerve, and my rt rotator cuff cleaned out. I have had all kinds of testing to no avail. I just seen to get inflammation all over then it settles into one area and then entrapped nerve. My Emg's never show too much nerve damage but because of all my symptoms they do surgery. Once they get into whatever body part they tell me afterward it was really bad in there......not what they expected at all. My last surgery was a radial tunnel release......wow that one we a tough one. My arm has had some issues ever since but much better than before surgery. That area started to hurt again. At first I thought it was just a flare....some inflammation. I started the normal course of ice and Advil. It wasn't working so I went to a stronger anti inflammatory still having pain and it was spreading up and down my arm. I was concerned maybe the surgery failed. Then I thought maybe another entrapped nerve in my shoulder blade. The neck really didn't cross my mind as the pain seemed to go up my arm. After trying every trick in the book I was still in pain. I went to my ortho and he did X-rays to look at my neck and shoulder. I was very surprised by the news. The first thing he said was you know there is something wrong here this entrapped nerve issue isn't normal......I think you need to go somewhere like the mayo clinic. Then he said all the pain I was describing pain in my hand, thumb, ring and pinkie fingers, forearm, elbow, back of upper arm, arm pit, shoulder, back, and chest was from all of my nerves being trapped in my neck. He told me I have the extra ribs and he feels I have thoracic outlet syndrome but he can't help me. He is sending me to a neurologist on Wednesday. I think he may very well be right as I seem to match up to everything I have read. I can only assume I am having all over pain because I have had so many previous surgeries in this arm. I am going to start pt even though it has never once helped to prevent surgery in the past. I have contacted a thoracic surgeon and they won't see you with out a definitive diagnosis. They did tell me I will need a angiogram ct scan and a nerve conduction test. I am in a lot of pain I can't find a comfortable position ever it seems like. I live in a rural area I hope these doctors don't send me round and round. I have been down this road before but not so many nerves affected at once. The surgery is very risky and the whole collapsed lung part freaks me out a little. Any advice you have would be greatly appreciated! Am I on the right path to get a definitive diagnosis?
Pattymary88 is offline   Reply With Quote
Unread 02-17-2013, 09:26 AM   #2
LiveLoveandTrust
Member
 
LiveLoveandTrust's Avatar
 
Join Date: Nov 2012
Location: Connecticut
Posts: 180
Default

Sounds like you're on the right path. Don't worry too much about a collapsed lung. That is actually a really common complication. I had both sides done at once and both lungs collapsed. I woke up breathing fine and didn't have any pain from it at all. If they hadn't told me it happened, I never would have known.
The surgery is risky, but if you're in that much pain and you're ready to go for it then it's the right move to make. Do a lot of research, make sure you have a fantastic and experienced surgeon, and ask a lot of questions!
LiveLoveandTrust is offline   Reply With Quote
Unread 02-17-2013, 08:51 PM   #3
Sheri_TOS
Member
 
Join Date: May 2008
Posts: 236
Default

Patty,

Surgery is each person's choice but if the quality of life is not liveable, then you might need to consider surgery. People who have bony abnormalities tend to fare better from surgery but this obviously depends on each person's case, the surgeon's ability, etc. I have had the surgery on both sides and had bony abnormalities both times (large bone growth on 1st rib (side 1), enlarged C7 transverse process and extra wide 1st rib (side 2)) and I'm glad to have done the surgeries. Given you live in a rural area, you need to consider traveling to see a qualified TOS surgeon and the surgeons are accustomed to dealing with patients traveling from out-of-state. What state do you live in?

The prior history of surgeries to that arm may impact the level of recovery which is why you really need to see a good TOS surgeon.

With the 1st surgery, I had the collapsed lung (pneumothorax) and complications with lung in the 2nd surgery. The doctors are aware of the potential complications and, in my experience, take any compliant seriously.
Sheri_TOS is offline   Reply With Quote
Unread 02-17-2013, 10:42 PM   #4
Pattymary88
Junior Member
 
Join Date: Feb 2013
Posts: 37
Default

Quote:
Originally Posted by Sheri_TOS View Post
Patty,

Surgery is each person's choice but if the quality of life is not liveable, then you might need to consider surgery. People who have bony abnormalities tend to fare better from surgery but this obviously depends on each person's case, the surgeon's ability, etc. I have had the surgery on both sides and had bony abnormalities both times (large bone growth on 1st rib (side 1), enlarged C7 transverse process and extra wide 1st rib (side 2)) and I'm glad to have done the surgeries. Given you live in a rural area, you need to consider traveling to see a qualified TOS surgeon and the surgeons are accustomed to dealing with patients traveling from out-of-state. What state do you live in?

The prior history of surgeries to that arm may impact the level of recovery which is why you really need to see a good TOS surgeon.

With the 1st surgery, I had the collapsed lung (pneumothorax) and complications with lung in the 2nd surgery. The doctors are aware of the potential complications and, in my experience, take any compliant seriously.
I live in GA Emory is an hour away. I guess I could have worded that better. It's just that the doctors in my area seem to work for the basics but if you have something's weird.....forget it! I will see the neuro up here if he laughs in my face I will go to ATL to try and get a diagnosis. Then hopefully to the thoracic surgeon. I don't want surgery but I also know the longer you wait the possibility of permanent damage is greater.
Pattymary88 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Don't even know where to begin. Jim091866 Depression 6 08-16-2012 08:53 AM
New here and don't EVEN know where to begin! floppychops New Member Introductions 7 07-06-2011 11:39 PM
Where to begin? Rosalinda2000 New Member Introductions 6 12-29-2010 12:58 PM
Where to begin? MomInFl Traumatic Brain Injury and Post Concussion Syndrome 12 10-14-2010 04:09 PM
Don't know where to begin DeniseBrett24 Lyme Disease, Shingles and Other Microbial Conditions 0 05-08-2008 12:18 PM


All times are GMT -5. The time now is 06:34 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives