Thoracic Outlet Syndrome

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Dr Hugh Gelabert

This vascular surgeon at UCLA is the first second and third choice of surgeon I would recommend for this condition. Well worth travelling for from anywhere

Best at diagnosis. 

Best at explaining. 

Best surgeon in the world.  

Meticulous to the extreme. 

High volume operator, but  with very personal touch. 

How do I know?

He operated on me twice for neurogenic TOS. Two weeks apart. 

No complications. Amazing recovery. 

I feel reborn. 

I have my hand functions proving every day.  

 

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  • Posted

    I know this is an older post, but thank you for being so willing to answer questions about your surgery!

    I've been repeatedly diagnosed, but finally offered some solution in rib resection and partial scalenectomy but an experienced surgeon I trust very much. (I developed neurogenic and vascular TOS through chronic arm dislocation after a kayaking accident, yanking out my arm and causing a stretch injury in my brachial plexus and long thoracic nerve.)

    Before my accident I was an avid climber and weight lifter. It's been 2 years of total disability, not able to live on my own, but I'm still Really worried about returning to overhead activities after surgery.

    Do you find any troubles doing things over head? Can you hang from your arms still? Does your physiotherapist think you will be able to return to lifting heavy weights? What about pulling or rowing motions?

    Hope your recovery is going well, and thanks again for sharing your experience.

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  • Posted

    I'm hoping to hear from anyone though realize it's an old thread, that could actually be helpful. I'm writing in regards of my boyfriend who has a major adversion to doctors and hospitals, likely stemming from getting a transaxial surgery for artero TOS when he was in high school, a year apart on either side. He will be 26 in April and had these done when he was 17 and 18 when his arms swelled drastically and lost feeling and I believe grew pale suddenly a while after getting serious about weight lifting. I know his doctor told him it was an experimental surgery, though it could've been his first time as it was performed in OSU medical, a teaching hospital in Ohio that I doubt gets a lot of traffic for the condition. I know they told him he wouldn't be able to play drums the same for a very long time, if ever, but he pushed himself to be performing again within 6 weeks (his band was actually touring a few states, he's pretty good and it is definitely an arm intensive activity). I've actually held the pieces of rib he got removed, his mom had one made in to a necklace for his last birthday, and it seems they took less than 3 inches to make a gap? From what I've read on here it sounds like in other cases the surgeons chose to remove much more? 

    I'm asking because he's recently told me he still feels it regularly in his left arm, muscle weakness/pain and that nerve tingling, his hands shake often, he complains of headaches in the back base (like directly inferior to external occipital protuberance) which I've read are a symptom? I just wanted to know if in your opinion/experience if this was common? Like a ghost pain or result of nerve damage, an unsuccessful surgery? I wish he would talk to a doc about it but refuses, he has done a lot of drumming/manual labor since high school and I don't have every faith in the hospital or surgeon, though he says he was a great guy he sounds inexperienced...his family didn't have another option financially. 

    I was hoping to hear of any ways to lessen the pain he is still living with or if this is possibly more serious than he lets on, or maybe if you guys have had the same things happen? It's just been over 8 years and I would hope the full recovery would be done by now but I'm no expert, and if he needs another surgery to resolve this idk I would have to really talk him in to even getting it looked at again. 

    Thanks in advance!

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    • Posted

      Dear Jess,

      Depending on the type of surgery your boyfriend had it is possible that he has developed TOS again.

      Where do you live?

      He needs to be examined by someone who knows how to diagnose TOS correctly (not many people do) - I was diagnosed by a physiotherapist after I already had 3 operations on each arm to release nerves.

      A physiotherapist may be able to help him improve his posture.

      He may need more extensive surgery than he had the first time. A surgeon who specialises in TOS (high volume operator) will know what needs to be done.

      The constant pain of TOS is like living with an elephant sitting on one's shoulders - I would definitely recommend that he sees someone to have this treated. Chronic pain spoils one's life and makes one very misearble all the time. It also affects all the people around one.

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  • Posted

    Hello! Really hoping that you will see this! My mom has been suffering from TOS for about 4 years now and I think the information you've provided about this doctor may be exactly what we have been looking for. How is your recovery going now?
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  • Posted

    Hi, I am so happy to have found this site.  I have been experiencing TOS symptoms since age 11 (I'm 47 now).   In just the past year I finally have a diagnosis of veinous TOS after a four day stint in the ICU for a blood clot in my subclavian vein.   Unfortunately, the attending physician was not familiar with TOS and after finding the clot decided to talk me into having a stent placed.  Within 10 days the stent was crushed and my symptoms returned.

    After much research, I have seen two great vascular surgeons one being Dr. Gelapert at UCLA.   Both physicians recommend rib resection surgery but have opposing approaches to surgery.   One does it via transaxillary and the other Dr. does the surgery via cutting above and below the clavicle.   

    Can anyone give me their opinion or experience with either approach so that I can make an informed decision?   

    Thanks so much!!

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    • Posted

      Hey Heidi! I'm so glad you found this article. I posted six months ago asking for advice and didn't receive a response but my mom ended up booking surgery with Dr. Gelabert and is doing fantastic. Her affected arm is now outperforming her other arm which will need the same operation in a couple of months. Definitely at least book a consultation with him, he is a phenomenal doctor that really cares about his patients and will honestly tell you whether or not the procedure is right for you . His method of going transaxillary poses less risk and there is also less scarring.

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    • Posted

      Thanks so much for your reply!  I have had my consult with Dr. Gelabert and have surgery schedulded for Oct.   I just wanted to make sure I was on the right track as the other surgeon I saw had a completely different approach.   Just wanted to get both sides before proceeding smile

       

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    • Posted

      I'm so pleased that you have seen Dr Gelabert and are scheduled for surgery with him! I had my TOS also diagnosed late in life (my early 50's after having the very first symptom in my late teens). I researched all the surgeons in the world who do TOS surgery and chose Dr Gelabert. I travelled from Europe to be treated by him.

      Dr Gelabert is not only a superb surgeon, he is caring and compassionate.

      He operated on me twice and I have never looked back. I had both sides operated on sequentially  - via the trans axillary approach. I also had Pec. minor tenotomies ( a small cut on the front of the chest near to the shoulder) at the same time. My scars are hardly visible!

      My two operations were in March 2014 - The nerve recovery is a slow process (around 3 years), but the relief is almost instant. I was back at work, and fully functional after a short time. I am however still taking Nuerontin 3 times a day and expect to do so for another 6 months. This helps with the nerve irritabilty while recovery takes place.

      I hope it goes really well for you. 

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    • Posted

      Hi guys, been reading on this site for a while. After 2 years of dealing with the symptoms and countless appointments and attempts to grt it right, i finally had surgery on 26th of september. I had a fibrous band removed, as well as some tissue to take pressure off the tendon and nerves (C6). My elongated transerve process (C7) was not removed. 2 days post surgery and i have a lot of movement in the whole arm and am about to get out of the sling. If anyone would like more info feel free to ask, happy to chat as i know TOS is such a daunting and difficult experience! Cheers, Paul.
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  • Posted

    Hi Everyone;

    I may not be on the correct discussion board here - I feel like i have all the sx but was told by a vascular surgeon after a normal arterial ultrasound that there is no was I can have TOS.  There was no exam or history taken, but he did mention that I am older and not an althete, therefore I do not meet the 'typical' criteria for diagnosis.  My question is - was anyone else diagnosed based off of an arterial ultrasound?  This Dr. claims that if the arteries aren't compressed, it follows that the nerves are not compressed either.  Thanks for any input you can give.

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    • Posted

      Hi Kim,

      I also had my diagnosis refuted by a vascualr surgeon as well despite muscle wasting and on ultrasound examination showing disappearing pulses with my arms in the "hands up postion" and even with visible veins over the front of my shoulder (all signs of TOS).  I then had an MRAngiogram with my arms in the stress position - and this confirmed TOS. 

      Someone who can't or won't make a daignosis of TOS is obviously not someone who feels comfortable operating to treat it. 

      I suggest you get a second opinion from someone else.

      Find someone who has a high caseload (operates a signficant number of patients with TOS every year) and have another examination. That way you are sure to get the best result from diagnosis and surgery - if you need it.

      Good luck.

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    • Posted

      Thanks so much for your input.  I went to a top Dr. at Stanford who supposedly works with TOS patients and has performed many operations. We drove 10 hours to get there only to find the dx turned down based on one test....he didn't even do a history or look at my aching shoulder.  Anyway, his claim is that there can't be nTOS without arterial TOS, because the compression that blocks the nerve also blocks the artery.  Have you ever heard of this before?  Because I thought that by far the highest number of cases are nTOS.  Thanks for your support - I found a guy at UCLA and we'll see what he says!

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  • Posted

    Hi, I have had two surgeries for TOS one back in 2012 and then a repeat surgery back in 2014.  I still have no relief and still cannot feel my chest from the nerves that well.  I have done everything the doctors have said.  I went to UNMC with the chief of vascular surgery that did my surgery and he will no longer see me becuase there is nothing more he can do without it becoming a huge lawsuit due to permanent diaphragm nerve damage.  I still have weakness, modeling of the skin, poor circulation, tingling, numbness of the neck, arm, and hand as well as headaches.  They told me that it was something I may have to live with the rest of my life. Softball was a passion and was unable to go on in my senior year of highschool and so I resorted to bowling.  Bowled in college for two years and doctor told me that I could no longer bowl anymore becuse of all the issues I was having.  It depends a lot on how your body reacts.  The PT and everything else I was to do for recovery may or may not work it depends on your body and how the scar tissue builds up.  The numbness goes into my face and makes me debilitated at some points.  Am wanting to go to another doctor and see if there is anything they can do but so far I have not had any luck.  Any recommendations?
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    • Posted

      they also removed the whole first rib in my surgery along with part of the scalene muscle, scrapped the nerves of scar tissue.  Said surgery would take an hour and a half but ended up taking 3.5 hours becuase it was so bad. 
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