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


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Old 06-08-2007, 09:02 AM #1
moneymaker8 moneymaker8 is offline
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Tongue TOS surgery scheduled June 18th

I had a visit with the cardio/thoracic/vascular surgeon yesterday and scheduled the TOS rib resection. The surgeon told me that he prefers the clavical approach vs under arm because this allows him to have a veiw of the entire thoracic area he said that he will remove a muscle and the first ribe as well as the extra rib. Also he said that he will remove any fibrous bands. I have seen this surgeon 3 times as well as orthopedic and nuero surgeon who have given the same diagnosis. I have had 4 surgeries in the last 2 years carpal left and right, ulnar release and 4 level ACDF. I have been in pain for 25 + years and have been on a severe decline over the last 2 years. I have been telling Doctors for years my pain in left sided heavy arm fingers on left hand turn blue severe burning pain between shoulders left shoulder blade deep pain tingling burning feel like I have band around left arm so much pain I cant focus. Anyway I have made the decision to have the surgery. I don't know anything else I could try I have been seen by every specialist from mayo clinic to shands Hospital. I live in Florida I have been diagnosed with everything from severe degenerative disc disease, fibro, myofascial pain syndrome, chonic pain syndrome, depression, neuropathy, connective tissue disorder, angina, ischemic attacks, I have known through listening to my body for years that something was wrong under my clavical bone and large shoulder muscle but no one would listen. Finally the extra ribs bilaterally were seen on the MRI after the cervical fusion. I have to have hope because even though I love my family and life most days I think it would be a great relief to dye but I think that god has brought me to this place and I know he has a plan for me in my next years to come I feel that I have had a hard time surrendering this to my heavenly father and that I finally have and once I did all this new diagnosis came about. I'm now at peace and ask that you all will pray for me for a sucessful surgery . I look forward to seeing what God has in store for me I put this all in his hands so that I can give him the glory.

Thank you all for this wonderful site that gives light to all of us who are walking in the valley day after day.

Beverley
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Old 06-08-2007, 11:01 AM #2
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Prayers and beliefs are a wonderful thing-
Of course you have my prayers and hopes for a smooth, safe and healing surgery and recovery.
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Old 06-09-2007, 09:39 PM #3
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The best of luck wth your surgery hun!! The power of prayer is an amazing thing and I use ths amazing thing night and day/.Just know that you are in His hands and that trust and belief will bring you thru just fine!! I will add you to my prayer list and pray for a safe, successful surgery! take care , cindy
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Old 06-09-2007, 09:56 PM #4
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Best of luck with your surgery and a speedy and safe recovery
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Old 06-09-2007, 10:25 PM #5
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sending you some prayers and some strength. But honestly to have been getting through all this for so long I think you have much strength already.

Good luck and we will be here to see how you do and wishing you lots of
speedy recovery.

Donna
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Old 06-09-2007, 11:39 PM #6
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Good luck to you, and speedy recovery...
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Old 06-10-2007, 01:17 AM #7
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Beverly,
I know the feeling of peace before a surgery and I'm so glad that you have found it.

That is the feeling that I had before my rib resection.

I had tried for 4 years to control everything that involved my tos and when Dr Ellis looked at me with my shirt off ( I had a sports bra on- now come on Alison I know what you are thinking!)

Dr Ellis just kept saying "Oh, God, Oh God, Oh God," when he looked at my swollen neck , prominent veins on my chest, the wasting of my hands and wrists and my swollen arms.
I thought if he is reacting this way and I know that he doesn't recommend surgery unless it is absolutely necessary I must be pretty bad.

I asked Dr Ellis for a recommendation of a vascular surgeon and he recommended Dr Annest.

By the time you get to the point that surgery is needed if you are like me I was so ready to try anything to get better.
I just surrendered myself and gave my problems to the Lord and he led me through that very difficult time.

Beverly, I think you will do great. You have done your home work from what it sounds and you've found a peace with your decision. You place your trust in a mortal man and you pray knowing that the Lord is guiding his hands, and those of the other people involved in your surgery.

There is something you need to be sure of Beverly. You must ask your vascular surgeon how MANY rib resections a year he has done. If he does not do very many of these surgeries then Beverly for the sake of your own safely and long term prognosis you must see a surgeon from our tos doctors list for a second opinion.

I see that you are in Florida. I don't know of any vascular surgeons there but I think Anne (astern is her name on the forum) came from Florida and had a tos surgery there. Hopefully she will see this thread and post her experience.

There are many people here on this forum who have had the rib resection /scalenectomy and are very passionate about their choice of surgeons.

Many people it seems travel to Denver for the 3 very prominent vascular surgeons there. Many go to University of Calif at San Francisco for their surgeries. There are a couple of very good vascular surgeons at UCLA that do many rib resections.

Hopefully others may join in just to give their opinions. There are maybe less than 10 vascular surgeons in the country from what I have read and heard who do enough of these surgeries to get fairly good results.

Beverly it would be easier if I didn't type you this long boring post. I am concerned as I'm sure everyone else on the board is about if your surgeon is qualified to do this surgery. Many docs say that they are qualified but then come surgery and the results are disasterous.

Here is the website of my surgeon Dr Annest. I am not trying to change your mind, but I do feel with a surgery this serious it is imperative that you get a second opinion.

http://www.vascularinstitute.com/index.htm

http://www.patientadvocate.org/help.php

http://www.patientadvocate.org/help.php?p=186

http://www.patientadvocate.org/report.php

http://www.patientadvocate.org/index.php?p=8

Free flights for medical treatment:

http://www.aircareall.org/

http://www.aircareall.org/listings.htm

http://www.angelflight.com/index.htm

Housing

http://www.nahhh.org/lodging3.php?city=Denver&members_state_id=6&state= Colorado

http://www.nahhh.org/images/header_bottom.gif

one of our forum members stayed here

http://www.exempla.org/care/lodging/

Last edited by ocgirl; 06-10-2007 at 11:47 PM.
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Old 06-10-2007, 01:38 AM #8
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I think ocgirl meant to post Dr Annest's website-
here is our " DOCTORS and PT List for TOS " his is included as well as many more-
http://neurotalk.psychcentral.com/showthread.php?t=135
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Old 06-10-2007, 09:58 AM #9
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Default Bevely,

Best of Luck to you in your up and coming surgery.. Please, Let us know how you did when your able to...
Many Hugs
Dawn
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Old 06-10-2007, 02:26 PM #10
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Unhappy Hi Beverly

I had bi-lateral cervical ribs and an extra left scalene muscle that decided to start giving me sx at age 35. Diagnosed in 2001, had cervie and first rib resections in 2004 in Denver with Dr Annest. I must mention the first FAILED attempt at a resection in Florida: mangled a nerve in my arm so bad it had to be removed. It was at TGH with a world famous heart/lung transplant doc. He assured me he could remove a rib (although he had never removed a cervie or 1st rib). He opened me up, poked around, closed me up and sent me home with 200 percocets and told me not to come back. My scar is larger than it needed to be.

Dr. Annest wrote a piece on TOS. See it here:
TOS Pain

Beverly, suffering like you have for 25+ years - you owe it to yourself to have the best most experienced docs work on you. DO NOT be afraid of traveling. These guys operate on folks from everywhere and will help you schedule your trip/appointments, etc.

Any of the 3 Docs in Denver would be an excellent choice. Please look at our list of doctors on the sticky note at the top of the thread list.

I applaude your attitude and trust in the Heavenly Father. I too have placed my life in His hands and when the pain gets too rough, I ask Him for Mercy for (us)poor sinners. Guess it's a Catholic thing to "offer it up".

God bless you and I'll say a prayer for you at Mass today.
Anne
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