headed to st. louis to Dr. Robert Thompson
 

Thank you to those who posted about Dr. Thompson. I live in Louisiana and was being sent to Dr. Spinner at the Mayo Clinic in Minnesota. I had no where to stay or the finances to stay somewhere in Minnesota. Looking at the posts I found the one for Dr. Thompson. I have family that live in St. Louis. So it's also like a homecoming for me.

I previously had TOS in my early 20's with a rib removal under the arm. Since that time have scar tissue built up now on the same nerve. Been dealing with this now for 8 years. Also from all the test also have herniated disc at c4-c5 and c6-c7. So early treatments were for only the discs.

So this battle with TOS is my second round. So hoping for a win. When this battle is concluded I'll move on to the disc herniations. But one war at a time.

please keep us posted. I too was referred to mayo but it would have been a logistical problem for me as well.

I'm glad Dr. Thompson is convenient for you. How was it determined you have scar tissue built up? What are your symptoms?

What is Dr. Thompson planning to do? Complete the scalenectomy supraclavicularly? Pec minor tenotomy? I'm sure he'll clean up any scarring (neurolysis).

I have cervical issues as well (had ACDF C5-6-7 Feb 2011). Multiple-crush syndrome is no fun.

Just did sniff test for surgery Tuesday. Will put details soon. So the battle #1 is started.

Good luck, chel1017! Best wishes for a speedy recovery!

Hi Chel
 

I went to Mayo. There are folks on line, who open up their homes in MN. to those seeking help at mayo clinic. This is free to do. I forgot how I got in touch with the organization, perhaps Mayo's advocasy group. We stayed with a family for three days, 27 below, and we were ever so grateful for their hosptiality. ginnie

I had surgery with Dr. Thompson in June, and I'm doing very well now. I could not have been more pleased with his professionalism and skill. I wish you the best!

JR1977, What was the diagnosis and what was done for you in terms of surgery by Dr. Thompson? Any info would be much appreciated. Thanks! It helps other members who are in that area and needing surgery as well.

Good luck Chel, our good wishes sent your way:). Wish you a speedy recovery!

curious to know why sniff test was done?

I've never heard of sniff test in relation to TOS..
Maybe to rule in or out for other conditions?

Sniff test is done for phrenic nerve function. I usually hear it in association post-surgery because of surgical damage to the phrenic.

I have NOT had surgery and was going to have the test performed because of breathing problems due to TOS. The surgeon decided if it came back positive he'd still suggest proceeding conservatively, so I skipped having it performed.

After 6 months of manual therapy, I was able to withdraw from albuterol and an inhaled steroid.

Just a update I have my surgery tomorrow. I'm having preoperative supraclavicular thoracic outlet decompression left side with left pectorlis minor tenatomy. Brachial plexus neurolysis. Sniff test was to make sure no damage to nerve in previous surgery when I was young. My symptoms were back of head headaches numbness and tingling in left arm and pinkie and ring finger. Pain in shoulder tautness in neck throat and temple area blurring in left eye and earache feeling in left ear. Praying for a good or better outcome. Dr Robert Thompson thinks I should do well since first surgery went well.

Reoperative not preoperative.

Headed to see Dr. Robert Thompson
 

I am headed to see Dr. Robert Thompson. Honestly a little nervous, and anxious. I guess part of it is just hoping to have some insight into this disease that nobody in my area seems to have a clue about. The last week has been tolerable as the TOS seemed to have calmed down for the time being. However, today it seems to be flaring up with a vengance. Hope Dr. Thompson can lead me in the right direction so I can go on with life and be able to enjoy my time with my 3 kids.

Dr Thompson visit 10/10
 

Your posts are the closes to my story that I have ever read. I had my rib removed in 1999. Second surgery for scar tissue removal and scalene. Everythings back and has been since the last surgery. I have been to 2 credited vascular surgeons, yet I have had Dr. Thompson on my list for over 2 years. He is my last stop and my last hope. If I lived in another country I would find the way to travel and see him. I was so nervous to meet him. I've known I needed another surgery, but the thought of another one frightens me. My symptoms are so very similar, the headache, ear ache...everything. I also have pain above my right breast, I shoudl say major pain and I am very very sensitive. I have worn tube tops and a specific tank top purchased from target for the last year. The chest pain is sharp and the area swells like a golf ball, my hand turns purple ...goodness I feel like the list can go on and on. I go back on November 15th. I will be working with his therapist and mine in Illinois first.....my last effort to prolong what I know is needed, but again I have already had 2 surgeries. Pleaselet me know your surgeries go ...PLEASE. My surgery, at a min pec minor and scalene. All these years, I have never met anyone else with TOS and it is so hard for people to relate to .... thank god for Dr Thompson!

Just noticed this.
I hope you are doing well with your recovery.

Sorry, just seeing this!
I've posted some details of my diagnosis and surgery on other threads, but briefly, I had a cervical rib and an aneurysm in my subclavian artery. Dr. Thompson removed my cervical rib and my first rib, took out two of my scalene muscles, and repaired the artery with cadaver blood vessel. It was about a 7-hour surgery, and I was in the hospital (Barnes Jewish) for 5 days.

after surgery with Dr Thompson
 

Well made it home October 10, 2012. Had surgery on September 25, 2012, stayed in hospital for 9 days. Yesterday went to see my family dr. had another xray still have some fluid on left lung. Today had another kind of chest xray. hoping to get well soon. surgery went well spent 4 days in icu with breathing problems and then 5 days in hospital with them trying to find out why breathing problems and heart rate being up. Went home to my family's with oxygen. When I went to followup to go home oxygen was well. So as of now family Dr says no light housework nothing but arm exercises for the surgery, other than that have to sit and rest for another 3-4 weeks i'll go crazy with my type A personality. well just wanted to give a little update. thank you for all the support and prayers.

Hello chel
 

Sorry you had such a stay in the hospital. That is never fun. I hope you get well soon. Be good to yourself, and rest. ginnie:hug:

Get well Wishes
 

Hi Chel,
Rest up and pamper yourself, you deserve it after being through so much. Sending wishes for your speedy recovery. Please post on your progress when you are upto it. Keep positive and let your body heal.:hug: