I am now just over 4 months post-scalenectomy (1st rib resection was in 2009) with no relief. I might actually be worse. I have been going to PT with Lider Chan and have been underwhelmed. I tried getting Workers' Comp to cover me going to Orange County to Ando & Aston with no luck.

Dr. Gelabert (UCLA) is quite disappointed (obviously) and we are going to try a pec minor block and see if that helps. If so, the pec minor tenotomy will be a consideration. If not, then, I don't know. They can only remove so much, right?

I am trying accept that this might not go away again, a concept that many of you know is hard to grasp. I'm planning to go back to school to get a Masters in Psychology, because I think it is a job I could physically do - especially private practice. It is also something I have been thinking about for years so this is just a good kick in the butt to move forward. I will likely get one of the voice recognition programs as I don't think I can type that many papers.

I've also started going back to the gym - I was a personal trainer and fitness manager when my recurrence happened. I just do leg workouts and ride the recumbent bike some but it is making me feel a lot better emotionally. So, trying to remain as positive as one can during this crap.

So sorry to hear you are still symptomatic after your recent "re-do" surgery. Four months, though, does not seem (to me) long enough to figure out whether the scalenectomy will ultimately help you or not. I remember Dr. Ahn saying when I was considering this surgery that it is actually a much harder recovery than the 1st rib resection. I took that to mean it may take longer than the 12- to 18-month recovery period most of the top TOS docs allow for with the rib resection, for neurogenic cases anyway. I could be wrong, but I want to tell you to hang in there a bit longer and try not to get discouraged. (I know it's hard, believe me!)

Also, you might want to see if you can do PT with Joyce Wilkenson if you're not progressing with Lider Chan. She's in Sta. Monica, I think. Very TOS-savvy and people love her technique. Her contact info is listed in the Drs. and PT sticky at the top of the forum.

I wish you the best of luck with your recovery. This stuff ain't none of it easy!

Thank you for the kind words. Dr. Gelabert believes I should be seeing some change by now as I have not improved since month 1 (after the "you cut me open and moved stuff around" initial recovery). Maybe he expects faster results because my recurrence was only in 11/11 and the nerves aren't really "damaged." I've just got time to pass anyway so we'll see if it gets better

I looked into Joyce pre-op but she doesn't take WC insurance. I've heard she's great.

Sorry to hear about your situation. Everything you have written sounds familiar. I want to say to you don't give up. We all know TOS is not easy, but we have to keep searching and seeking help. I'm at the gym almost every day, and the only thing I've been doing is using the elliptical. Not using the arm part. But it helps to get out of the house, and try to live a peaceful and fun life. Keep asking questions to your doctors and looking for others who can help you who's under W/C. May GOD bless and strengthen you.

There's also Bechtel & Associates in Sherman Oaks. Jeff Loox was my PT there and he is not only TOS-savvy but very empathic, as he suffers from a chronic health condition himself. On Ventura Blvd. just east of Woodman.

Also, I've not seen her myself but Leslie Rudzinski studied with Dr. Ando and has PT offices both in Century City and in Malibu.

Not sure whether either takes W/C insurance but easy enough to find out by calling…

Good luck

Can you pay privately for couple visits and see Art and learn some of the basic mobilizing he teaches with the help of props? He starts mobilizing the very first day and also teaches the self mobilizing the very first day itself.
If you can have 2 or 3 sessions with him and James and purchase the props and work on it everyday and also work with your local PT on your WC would that work for you?
I had to do something similar for scar related issues after my scalenectomy in 2010, since I could only go to him once a month from Northern Cal and have 2 or 3 sessions with them each time I went there.

Hi all:

Sec- Sorry to hear about your pain but it does seem pretty early. Were you happy with Dr. Gelabart? If I were to consider surgery it would most likely be with him.

James is no longer at Ando and Aston but Heather is very Good. I have tried both Joyce Wilkinson and Lider Chan and have spoken with Leslie Rudinski on the phone. Art is the best. Joyce was ok but couldnt help me when I was so acute.I was disapointed with Lider as well.

Sea Pines: I hadnt heard of Jeff Loox- one of another forum members Junior Corey was looking for someone in the valley. What does he do? I am also looking for someone closer to me too- I want to start focusing on strengthening. I may go back to an old PT who has alot of Pilates machines and an Osteopath, massage etc- His name is Rick at Sportfit in SM. I'll let you all know. I am also going to try a chiropracter since my neck is the worst pain. Also I have bben thinking about starting a thread for all of us Southern Californians- to share Dr. info and eventually maybe a website-What do you think?

Sea Pines - I will find out about the Sherman Oaks guy and Leslie, and then see if my WC will accept either. I am not even sure how many sessions I have left.

Stos - Unfortunately, I can't afford to pay out of pocket for Ando at this time.

jkl - I love Dr. Gelabert. He did both of my surgeries and I feel he is a very competent and knowledgable in TOS. I also like his personality - I find him rather funny. I think it would be great to have a SoCal based link. There is so much in this area and difficult to keep track of it.

20yrs - A recumbent bike is also a great option - many of them have arm rests. I can't do the elliptical (even with out arms) because I need the support.

I have not given up all hope. I will continue to do what I can to get better - trust me, I'd much rather live without pain! But I am also making decisions for my future based on having TOS. Even if I do improve, I want to make sure I am taking care of myself in a way that won't create another recurrence (if possible).

fyi- this group of doctors up in Seattle seem to think the pec minor is often the cause of recurrence.

Stay optimistic and please follow-through on the pec minor testing. Let us know how it goes. best wishes -

-------------

[Recurrent neurogenic thoracic outlet syndrome
Esteban Ambrad-Chalela, M.D., George I. Thomas, M.D., Kaj H. Johansen, M.D., Ph.D.*
Vascular Institute of the Northwest, 1600 E. Jefferson St., No. 101, Seattle, WA 98122, USA
Presented at the Annual Meeting of the North Pacific Surgical Association, Seattle, WA, November 8, 2002


Abstract

Background: Although 90% of patients with neurogenic thoracic outlet syndrome (NTOS) experience “excellent” or “good” results after
thoracic outlet decompression, recurrent symptoms may develop in certain patients.

Methods: This is a retrospective review of patients with NTOS who developed recurrent symptoms of upper extremity/shoulder/neck pain,
weakness and limitation of motion at least 3 months after initial relief of symptoms by surgical decompression. Diagnostic procedures and
outcomes of reoperative surgery were assessed.

Results: Among almost 500 patients undergoing initial successful thoracic outlet decompression for symptoms of NTOS during the last
decade, 17 redeveloped classic NTOS symptoms (3 of them bilaterally) at intervals from 3 to 80 months (mean 18 months) after the initial
operative procedure. Ultimate diagnoses included incomplete first-rib resection (n=1), compression of the brachial plexus by an ectopic
band (n=1), persistent brachial plexus compression by an intact first (n=2) or second (n=1) rib, brachial plexus compression by the
pectoralis minor tendon (n=13) and adherent residual scalene muscle (n=14). Anterior scalene muscle block was positive in 9 patients
later found to have recurrent symptoms from adherent residual scalene muscle. Among these 20 cases of osseous or musculotendinous
causes of recurrent NTOS, all had “excellent” or “good” results from repeat surgery to eliminate the underlying structural problem (removal
of intact or residual rib, pectoralis minor tenotomy, brachial plexus neurolysis, or a combination of these).

Conclusions: Complete excision of cervical or first ribs and subtotal excision (instead of simple division) of the scalene muscles will
decrease the incidence of recurrent NTOS. Pectoralis minor tenotomy should be considered part of complete thoracic outlet decompression.Anterior scalene muscle block accurately predicts outcome of reoperation for certain types of recurrent NTOS.]
http://www.ncbi.nlm.nih.gov/pubmed/15041500

I can totally sympathize. Dr. Gelabert has been my surgeon as well, I did the first rib removal in 2008, not much difference in my symptoms. He wants to move forward with a scaleneectomy, I am just not sure. Over the last 1 to 2 years I have increased my physical therapy on my own, and that has helped somewhat, but the pain is almost intolerable, every day all day.
I got hurt at work as well, and it's a nightmare. Try to stay positive and you are not alone. I just don't know if I have the Courage to go through another surgery. Please keep me posted on how you recover. Many prayers to you.