Originally Posted by Jlorainne

"It seems that Dr. Thompson wants to throw the kitchen sink at you by decompressing all three potential areas of TOS compression:

1. Scalene triangle (scalenectomy)
2. Costoclavicular space (rib resection)
3. Subcoracoid space (pec minor tenotomy)

What is the evidence that you have all three areas of compression and why are all three procedures necessary? "


I definately have all three areas of compression. Confirmed by others; not just Dr. T. Maybe he does do a one size fits all but from his success rate maybe one size fits most. Im not loving the idea of a surgical option. However several of my family members have had major surgeries to fix areas that cause massive pain. They have all said that it is 100% worth it.


I want to let everyone know that I appreciate all the feedback on here. I need these questions. Thanks

Jess

Originally Posted by nospam

It sounds like you've done your due diligence.

Good luck with surgery and congrats on the nuptials!

Please promise not to forget about us. Come back and update us on your progress.

Originally Posted by Jlorainne

I saw Dr. Thompson on Wednesday. He and his staff are wonderful. If you are in the midwest he is the guy to go see.
When you walk into his tiny new patient office you are bombarded with success stories. There are pictures, articles, athletic jerseys and thank yous covering his walls. All successful surgeries. Its overwhelming. It gave me hope that I could get my life back. He has a small staff. I met a few of them. He has surrounded himself with wonderful people. His secretary Della is an amazing kind woman she helped me with everything I needed. I had to call her several times and she was nothing but kind and patient.

Dr. Thompson's RN Valerie is also amazing. She was very patient in my exam and did not want me to push myself, because she understood the pain it would cause me. We talked for a while about my pain, symptoms, and my lifestyle. She asked about what makes pain worse or better. Then we did an East test. (hold your arms out to your sides like a touchdown sign. Arms bent at the elbow. So your arms and head look like a sideways E. Then make fists and then release, fists and release, the test is for three minutes.) It basically makes all your symptoms flair up all at once. I barely made it to 2 minutes. I was in excruciating pain and both hands were numb. She kept telling me to breethe. She also tested my range of motion and grip. Pretty standard stuff. She was patient and let me take breaks. She listened, it was amazing to talk to someone who understands this syndrome. Then we met with Dr. Thompson.

Dr. Thompson was not what I expected. He walked into the room introduced himself and sat down in a desk chair. He slouched and just looked like a friend getting comfy before a long chat. He was ready to listen and answer any questions. Which was good cause I had a lot. He checked my grip, range of motion, and pulse over my head. Then told me that I had scored very high on their tests. I asked if that ment I could go home. Or if that I was really bad. He laughed and said that I have definitely have neurogenic tos very bad. No arterial or venious. He said he wants to do surgery on both sides to remove the anterior and middle scalenes, my first rib. And split my pectoralis on both sides. Surgeries would be 6 weeks apart. In the hospital for 3-4 days and have to stay in St. Loius and extra 4-6 days just to make sure I'm close should any complications arise. He wanted me to do a scalene block and meet with a physical therapist before I made any decisions. He talked with me and my mother for over an hour. Answering all of my questions fully. He was wonderful. He said that he recommends surgery a lot, but that is because it works. He does at least 6 week and that 95% of his patients get to go back to their lives. They do a lot of surgeries and they do them very well.

Then I had the scalene block. One of the worst experieces of my life. It did not help my pain. All the nurses and Drs were wonderful. It is just not a fun procedure, and I do not tolerate needles well. I almost passed out from pain. It's a dull needle and they really had to push hard to get it into my muscle.


Last was the physical therapy appointment. Yes this was all on wednesday. A very long and painful day. The Physical therapist was amazing. Jeane was also very knowledgeable. It was so wonderful to have all these people who know and understand tos. She had some suggestions like sleeping with pillows and using pillows to lift my arms and shoulders to take pressure off my scalenes. It is amazing how much further in can move my neck in the elevated position. She thinks pt can help, but I cannot continue working for Starbucks. I have to change careers.

Dr. Thompson and his team are wonderful. Go see them. Yes, he is surgery happy, but if it works then I fail to see how that is bad. I told him that I would be writing about him on here. He said that was great. He would love to help more people. He is also doing research to help more people with tos and to help others understand it. That is very important to me. I am going to be part of a new study that keeps track of patients long after surgery to see the outcomes of tos surgery. He said that he thinks the surgeries will help me, and that after I can go back to my life. I will always have tos and some pain from time to time. However my pain will be at a one or two, not a nine or ten. I can stay at a job that I love. While the physical therapist said that I have to find a new career.

The thing that he said that stuck with me was that we, all tos sufferers, need to keep in mind that after surgery we are not just recovering from surgery but also from TOS. It's a long recovery. It will take time for nerves to mend and muscles to readjust. I haven't made up my mind yet, but I'm clearly leaning toward surgery. I want my life back and Dr. Thompson thinks he can give it to me. And judging by all the thank your and photos covering his office walls I believe that he can.

Jess

Originally Posted by jkl626

Hi Jess,
Did he say he wanted to do all three on you or is it that he just does all of those depending on the diagnosis.Thats what Dr. Ahn does after his Angiogram he can tell where the compression is.

How do you know you have all three areas of compression? I still dont know where my compression is and my scalene block was positive. Have you spoken with him since your scalene block and your visit with the pt? did you have the MAC test or how can you tell your pec minor is involved?

Sorry for so many questions , but it is important to understand everything before you commit to the surgery, also I am curious for myself.
Does he do all of these surgerys together? If he does then he is one of the only ones that does this.
Julia

ps sorry I just scrolled down and saw marc was asking some of the same questions.

Originally Posted by Jo*mar

(Reported recently by Machanic, BI and Sanders, RJ in the Annals of Vascular Surgery,March,2008.)]
www.ecentral.com/members/rsanders/

http://www.researchgate.net/publicat...utlet_syndrome

Originally Posted by TOStrojan

At this point, I'm not interested in any more tests (scalene block, etc.). I know I have TOS and so do the Doctors. The only thing left to do is to have surgery or live with pain management.


** The above is only my opinion based on my journey **