Increased TOS symptoms when lying down or leaning back

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I spent 8 months trying to get a diagnosis for all my pain and loss of function in my right arm and hand until I finally found the right consultant who sent me straight for an MRA. This showed bi-lateral arterial TOS with total blockage of the subclavian artery with my arms raised. I am now two weeks post op having had the right first rib and middle and anterior scalenotomy. One of my main initial symptoms was that when I lesn back or lie flat I get terrible occipital headaches which refer to frontal sinus pressure. This did subside after a few months but now post surgery it is back. Had anyone else had this symptom too and have an explanation?

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13 Replies

  • Posted

    Pectoral is Minor is a secondary entrapment point you may need a peck minor tendonotomy I got just as much relief from it as I did the resection and scalenectomy. It's a out patient procedure.
    • Posted

      When I say Secondary entrapment piont I'm talking about your Brachial Plexus and all the nerves involved both TOSn,v,a and Peck Minor. I've had bilateral 1st Rib resections with anterior & medial Scalenectomy as well as bilateral Peck Minor Tendonotomy ( they make a small diagonal insicion between your chest and shoulder and cut the Peck Minor Tendon which inserts into the Acriomial Process of the Scapula under the Peck Major the Muscle will Atrophy after that ( where it inserts into some variation of ribs 2-7 depending on the person)
    • Posted

      Thanks for you messages, yep just had right side done first and left will follow. How long post op did your symptoms start to disappear? I'm still thinking that it is due to the inflammation and bruising of operation which is why I am still struggling with the same symptoms as I am still struggling to type and have increased pain and headaches when I lean back or lie down. Before they woke me up from the op they checked every which way that I had a radial pulse which I did so it can't be snything to do with the vein or artery anymore can it? My vein and artery were pretty much joined together by the amount of scar and fibrous tissue I had in there so there was a log of dissection needed.
  • Posted

    Hey Jules! I'm still pre-op, but can relate to these type headaches. In researching my own symptoms, I've come across the condition Occipital Neuralgia many times. What you describe just made me think of it. I hope the rest of your recovery is going well! Will you be or have you had the surgery on both sides or just your right?
    • Posted

      True, I would think of Occipital Neuralgia as more of a descriptive word for the symptoms as opposed to a condition/diagnosis with a specific treatment or cure attached to it.
    • Posted

      Occipital Neuralgia is a medical condition with a variety of treatment options from my understanding.
  • Posted

    In terms of a explanation it's hard to explain it all Google Brachial plexus it innerviates your arm front of your upper chest, shoulder, & upper back. Headaches are common specifically occipital. You said you had bilateral TOSa and they only removed your right Rib are they planning on going back in for another surgery. Everything could be coming from the left. I had my right side done first as well and developed headaches for the first time in my life I had the left rib resection done and they all went away. Good luck!

    • Posted

      That's a good point about the left side.  I have been pretty non symptomatic on the left and it was only when they had me through the scanner with my arms raised and my left arm was excruciating as well and my hand went cold and blue, that I realised it was bilateral. How long after the right side did you then have the left done? I'm seeing my surgeon on Monday but as of two weeks post op my symptoms have not changed since pre op and if anything they are worse!  Thanks for your help.
    • Posted

      You can go back now if you think you can handle bilateral pain and recovery at the same time. My headaches went away after I did the left side and the chest pain, sub-scapula & shoulder pain went away after he cut the peck minor tendon. I almost got more symptom relief from the peck minor tendonotomy. You can have residual pain if your surgeon sucks keep in mind it's a1st rib resection meaning they only cut out a small part of the rib that is compressing the n ,v, or a viens lay closest to sternum mid clavicular the artery is beside that more mid axialary then the nerves over the top so if they didn't cut out enough rib you can still have compression if that makes sense.

      My arm still was going numb when I layed down as well, standing I had a knot under my shoulder blade and my ribs were out of alignment specifically the ribs that peck minor attached to this caused the chest pain. I could feel my ribs stick out s little about 2 inches off my sternum. Peck minor was causing all that though I had my 4th and final surgery on Tuesday in already back to work,

      Where did he go in at?

    • Posted

      Pay attention to how you sleep I did a lot of damage while sleeping when my symptoms where exacerbated
    • Posted

      Hi went in sub clavicular for best visibility of blood vessels. My EMG was negative for nerve impingement. He has taken the whole first rib not just a section and had to remove a lot of scar and fibrous tissue from around the vessels as they were pretty much stuck together. He had radial pulse post op while I was still prone and asleep but I will mention pec minor on Monday as I still have constant pins and needles when I lie down. Thank you
    • Posted

      So, I have bitten the bullet and having seen my consultant today, I am having the left side done next week.  He is not convinced the headaches are related but it is too much of a coincidence for me that they have come back immediately post.  I have to have it done at some point anyway, at least this way it gets it over and done with and hopefully back quicker to a normal life and back to doing some exercise properly again.  Thanks for your story and advice.
    • Posted

      EMG is a f*cked up diagnostic tool for TOSn if it is (+) the nerve is irriversably damaged kinda late... if they listen to the patient they can treat it before the permanent damage is done. My upper chest still has a numb sensation when palpated but it's not bothersome. He will probably want to do the other side before the peck minor which is most likely the proble ( I developed new headaches after I had one rib removed and it went away after the other side was done) Where did you pick up the injury that put your scalene muscles into spasm car accident, sports?

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