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

    Hi  How come you had to be operated on twice?  One side one week and the other side two weeks later?
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    • Posted

      I suffered from TOS on both right and left sides. I was severely affected with pain weakness and wasting of my muscles. I travelled from the UK to Los Angeles for my treatment. I wanted to have both sides treated during the same trip to minimise the travel & expense & time off work.  
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    • Posted

      No accident. Just the way I am built, and my activities and possibly lax ligaments. I'm not sure why the deterioration was so sudden. Probably triggered by a holiday where I swam each day for 2 weeks.   

      Before this surgey I have already had carpal tunnel release, ulnar nerve release & transposition at the elbow and CMC thimb joint stabilisation. On each side. Quite a typical history for a TOS patient to have. Each procedure helped a lot at the time  but  relef of symptoms was not permanent. 

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  • Posted

    I am now three months following my operation.

    My physiotherapist tells me I have made a miraculous recovery. 

    I have returned to work. I am fully functional.

    I have No Pain. No Cramps. No Weakness. 

    It is more than I could ever have hoped for.  

    I can only hope and pray that other patients eith TOS can find a surgeon as meticulous and gifted as Dr Gelabert. 

    I think the key to this operation is the surgeon needs to do more than 15 operations a year to be familiar with the territory. My surgeon does 80 (eighty) of these procedures per year. 

    Good luck. 

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  • Posted

    I am now 4 (four) months following my operations. 

    My recovery continues to go well. It is better than I could ever have imagined or expected. 

    I am back to all daily activities that I couldn't manage before my surgery!

    I am still taking GABAPENTIN (Neurontin) twice day and expect to stay on this for at least 6 months. This helps stabilize the nerves and relieves the discomfort while they regenerate. My surgeon told me I can expect 1 cm nerve recovery per month.

    I am no longer on any painkillers.

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  • Posted

    Hi I just had a first rib resection and just wanted to know from someone with the same experience. How long was your recovery?  Do you feel normal again?  Are you restricted?  Thank you!

    Seth

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  • Posted

    Hi Seth,

    I'm so pleased to hear that you have had your operation. Nerve releasing surgery gives [u]immediate[/u] relief, but [u]slow[/u] recovery.  Your recovery will depend on how long your symptoms lasted for before surgery. I felt "normal again" virtually immediately, that is no more discomfort from the nerve compression, but I have ongoing symptoms from the recovering nerves. My surgeon told me that my nerves would recover at the rate of 10mm per month, measured from the site of compression (in your neck). Recovering nerves need to be "setttled down" with medication like Gabapentin and Amitriptylline. I am now six months after my operations and I am still on both of these tablets, and do not intend stopping for at least another year. I no longer take pain killers and have not done so for a long time. I find sleeping flat on my back with a small towel roll under my neck very comfortable. I was also advised not to carry anything heavier thatn 1 kg for 3 months. 

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  • Posted

    Hi Seth,

    I was in pain for about 3-4 weeks after my operations and took painkillers (Tramadol, Ibuprofen, Paracetomol) as well as Gabapentin & Amitrptylline. I am no longer in pain. 

    I do however have some discomfort every 12 hours when I am due for my next dose of Gabapentin. I will therefore continue with this until my nerves have recovered fully. This may take up to three years. My hand function is back to normal but I still have muscle wasting which is recovering slowly. 

    Pain is very subjective - so one person's pain might be tolerable for another person. Very importantly: You need to be on adequate doses of pain relief to be without pain in the early part of your recovery.

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  • Posted

    Yes. In the beginning it was every week. It is very important to keep the nerves moving so that they don't get stuck down by scar tissue. The diaphragmatic breathing exercises in the begining are small stretching movements to keep the excursion of the nerves by a few millimetres. I also did exercises to keep the shoulders moving in circular and pendualr movements. Hydrotherapy also helps one to relax and gently stretch the muscles and nerves. The frequency of the therapy decreased to fortnightly, then three weekly and now it is monthly. My physiotherapist specialises in TOS - so he knows exactly at what pace I should be exercisng and recovering. I find it really important to have someone knowledgalbe to talk to on a regular basis. Not all physiotherapist know a lot about TOS as it is quite rare. So be careful.  

    Which country have you had your operation in? Did your surgeon give you a rehabilitation programme? Do you have a good Physiotherapist who can supervise? 

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    • Posted

      I had my surgery done in virginia in the United States. Surprisingly my surgeon told me I didn't need physical therapy. That is why I am somewhat clueless as to where I should be in recovery. On top of that he is pretty much impossible to contact, after my two week follow up I feel like he's pretty much forgot about me. 
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    • Posted

      In general compressed nerves need releasing, and recovery can't really be speeded up by squeezing a ball or exercising. TOS is different because the brachial plexus is surrounded by scalene muscles and a big artery and vein. All these structues get very "sticky" after surgery and can stick to the nerves as everything heals. The newly released nerves need to be kept moving much like the parts in a watch need to keep moving otherwise things seize up. 

      If you want to become an expert on TOS there is a very good book published last year, available on kindle. You can read up about the physical therapy yourself and even lend the book to your therapist to read.

      Was your operation done transaxillary or above and below the collar bone? Were you done by someone who does quite a few of these operations in a TOS centre? Are you a professional sportsman?

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    • Posted

      It was done transaxillary by a thoraci surgeon who specializes in thoracic outlet syndrome. I never did get to ask him how man procedures he does per year. I am a college golfer so I really hope to be able to play again. 
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    • Posted

      It all sounds good.

      I'm sure you will get to play again!

      That's the whole idea of having surgery! To get back to normal.

      How recent was your surgery? Was it on the dominat side? 

      Do you have to have the other side done too?

      What was the cause of TOS in your case?

      How long have you had symptoms?

      Was the whole rib resected or only part?

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    • Posted

      It was done for months ago and it was due to a callous on my first rib from an old fracture irritating a nerve. It was done on my dominant side and I was having symptoms for about a year before the surgery. He removed the entire rib. Right now my main concern is what feels like spasm in my upper back and my shoulder and neck on the operated side. It is still pretty painful and my shoulders grind when I shrug. 
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    • Posted

      Are you on Gabapentin (Neurontin)? You need about 300mg twice or three times a day. And Amitrptylline 20mg at night.Do you have a primary care physician who can prescribe for you?

      The spasms are from the nerve firing up the muscles again. I had that too. I saw my physiotherapist twice a week for ultrasound therapy to break down the spasms.

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    • Posted

      No, I don't about recurrence.

      Scar tissue is very active in the first few months and then settles down, and softens. The final result of any operation takes at least one year to evaluate.

      I never saw my surgeon after my operations either, nor did he suggest that I return for follow up. 

      My diagnosis was made by the physiotherapist and that is the reason I see one.

       

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