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

Sufferring in Orange County, CA

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Unread 11-09-2012, 11:58 AM   #241
stos2
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Marc, I feel so bad to hear you are going thru all this pain. Hopefully it will resolve soon.
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Unread 11-09-2012, 08:42 PM   #242
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me too sorry to hear this. it sounds like you have a good team of dr's though. I wonder if it is worth a trip to see dr. Jordan? Take a look at his website i know there is stuff on headaches there and also Orthohealing-Dr Samson and Dr. Aufiero-cutting edge prolotherapy and PRP.
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Unread 11-10-2012, 07:23 PM   #243
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Quote:
Originally Posted by nospam View Post
My MRI didn't show anything wrong.

I have been suffering from these headaches for over a month now. I had some occipital/trigeminal neuralgia symptoms prior to rib resection surgery, but nothing like this. Those headaches went away with surgery. These new headaches are accompanied by suboccipital pain and don't appear to be TOS related. Medrol and Toradol have only mildly helped. Norco is no longer effective. Neurontin has been the only thing to really helped. I have increased from 400mg x3/day to 800mg x4/day. I now take Percocet occasionally instead of Norco.

Dr. Ando has done joint mobilization of C0-C1-C2-C3. However, PT hasn't produced significant relief. I had a diagnostic block of C2-C3 medial branches as well as the 3rd occipital nerves. This helped a little but didn't help the pain at the base of the skull or temples/tmj. I have to go through another diagnostic block before they will consider other theories (to rule out false negatives/positives). If the diagnostic block works they want to do thermal RF ablation. I feel like the A-O and A-A joints are the source but the doctors do not yet agree and feel that these injections are risky since they are so close to the brain.

http://www.asipp.org/documents/PDF/0...ai%231AC7A.PDF

If you are experiencing similar headaches, I recommend seeing a pain management specialist to investigate.
Hi Marc, not sure if you remember but a while ago I mentioned having the RF ablation to my medical branch nerves c2 to c6. I did have some relief with the diagnostic block but the ablation did not help, if anything, it increased my pain. It is actually hard to identify if the medial branches are the source, my doctor went off it based on the block and my negative EMG (saying medial branch nerves cannot be identified as a source through an EMG as they are so small). But my EMG before surgery was positive and I guess I basically had an incompetent dr perform my first one. I too have a lot of pain in my occipital lobes and recently had surgery but so far it hasn't helped that. Only thing that helps me is joint mobilization of my neck by my therapist. Just wanted to let you know my case if it helps you with your decision if/when you go through with the ablation.
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Unread 12-08-2012, 05:21 PM   #244
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Hi Mark,
Hope you are doing well. How are you doing and has it been difficult to go back to work? Any updates?
Thanks
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Unread 12-19-2012, 01:47 PM   #245
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Hello all.

I had to read my old posts to realize that my headaches and neck pain dated all the way back to August! The good news is that the problem is not related to TOS or my TOS surgery. After botox and numerous injections and diagnostic blocks, it appears that the source of the problem is adjacent to my cervical fusion from 20 months ago. I had RF Ablation of C2, C3, and C4 medial branch nerve roots on the left side Friday and the right side will be this afternoon. I had residual pain from the procedure but started feeling substantial relief yesterday. I'm hoping to be feeling much better by Xmas!

I have been able to work without major problems. Luckily the holidays are slow for my line of work. I take Percocet as needed for the pain along with 2400mg Gabapentin/day. I did go off of the Gabapentin a few times for the diagnostic nerve blocks and I noticed that I still have a lot of ulnar numbness on the left side. I'm back in PT to continue to increase mobility post rib resection surgery.

My wife and I are expecting our 1st child in June. Things are looking up!
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Unread 12-19-2012, 07:19 PM   #246
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Quote:
Originally Posted by nospam View Post
Hello all.

I had to read my old posts to realize that my headaches and neck pain dated all the way back to August! The good news is that the problem is not related to TOS or my TOS surgery. After botox and numerous injections and diagnostic blocks, it appears that the source of the problem is adjacent to my cervical fusion from 20 months ago. I had RF Ablation of C2, C3, and C4 medial branch nerve roots on the left side Friday and the right side will be this afternoon. I had residual pain from the procedure but started feeling substantial relief yesterday. I'm hoping to be feeling much better by Xmas!

I have been able to work without major problems. Luckily the holidays are slow for my line of work. I take Percocet as needed for the pain along with 2400mg Gabapentin/day. I did go off of the Gabapentin a few times for the diagnostic nerve blocks and I noticed that I still have a lot of ulnar numbness on the left side. I'm back in PT to continue to increase mobility post rib resection surgery.

My wife and I are expecting our 1st child in June. Things are looking up!
Congratulations marc!! Very exciting news.I have been wondering how you were doing, I was just down at Andos today. i will be posting on my thread soon. I am better but still up and down.
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Unread 12-19-2012, 09:50 PM   #247
tic2
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Quote:
Originally Posted by nospam View Post
Hello all.

I had to read my old posts to realize that my headaches and neck pain dated all the way back to August! The good news is that the problem is not related to TOS or my TOS surgery. After botox and numerous injections and diagnostic blocks, it appears that the source of the problem is adjacent to my cervical fusion from 20 months ago. I had RF Ablation of C2, C3, and C4 medial branch nerve roots on the left side Friday and the right side will be this afternoon. I had residual pain from the procedure but started feeling substantial relief yesterday. I'm hoping to be feeling much better by Xmas!

I have been able to work without major problems. Luckily the holidays are slow for my line of work. I take Percocet as needed for the pain along with 2400mg Gabapentin/day. I did go off of the Gabapentin a few times for the diagnostic nerve blocks and I noticed that I still have a lot of ulnar numbness on the left side. I'm back in PT to continue to increase mobility post rib resection surgery.

My wife and I are expecting our 1st child in June. Things are looking up!
Congratulations Marc great news and glad you are feeling better.
I found out I have stenosis of jugular veins at C1 which is adding to all my problems.
I went to see Angel and he was not at all receptive of Collins detailed report. He totally dismissed Collins.
I left rather dismayed. He seemed very nice so not sure what is causing what. So off to cedar Sinai docs and UCLA docs for consult.
Mary
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Unread 12-20-2012, 01:35 AM   #248
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Quote:
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Congratulations Marc great news and glad you are feeling better.
I found out I have stenosis of jugular veins at C1 which is adding to all my problems.
I went to see Angel and he was not at all receptive of Collins detailed report. He totally dismissed Collins.
I left rather dismayed. He seemed very nice so not sure what is causing what. So off to cedar Sinai docs and UCLA docs for consult.
Mary
If I recall correctly, Dr. Angle does not trust imaging in diagnosing neurogenic TOS. I'd be surprised if he didn't at least look at it but relies more on clinical diagnosis with physical exam vs. imaging. He did order an additional MRA for me to check for vascular issues but non of the imaging told him what he would find in surgery.

You must be comfortable and confident in your surgeon. Keep looking until you find one you like.
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Unread 12-20-2012, 11:48 AM   #249
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[quote=nospam;941023]If I recall correctly, Dr. Angle does not trust imaging in diagnosing neurogenic TOS. I'd be surprised if he didn't at least look at it but relies more on clinical diagnosis with physical exam vs. imaging. He did order an additional MRA for me to check for vascular issues but non of the imaging told him what he would find in surgery.

You must be comfortable and confident in your surgeon. Keep looking until you find one you like.[/QUOTE

Hi Marc
I really liked Angel and I have been told I have compression of major veins just below my clavicle. But he actually rolled his eyes and read part of the report and mocked what was written. He shot down all credibility of the report.
I am not complaining but was totally shocked.
I am so tired of finding a solution and having doctors question what others have done or said.
How long does it take to figure this out?
The stress is literally killing me.
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Unread 12-20-2012, 11:52 AM   #250
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Marc, so happy things are looking up for you! so excited about your first child as well! congratulations and a great 2013.
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