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Nightingale's avatar
Nightingale
Member
4 years ago

porta cath nerve shoulder and neck pain

hi there, was wondering if anyone has experienced what feels like nerve damage from their porta cath. I have had mine in for a month now and have suffered from debilitating neck and shoulder pain including rapid heartbeat when I stand up and lift my chin, weakness in legs and headaches. Have had a CT and ultrasound and it appears to be lying correctly. At first I thought I had immobilised my neck to avoid the weird dragging sensation (after the surgery) and that caused it to seize up but now I'm not so sure... have had acupuncture and physio but it doesn't seem to be getting better and I can't seem to find much information online. I do find it easier for chemo (first one with the port last week) but have 11 taxol to go and am worried the damage will be irreversible. Any info/advice greatly appreciated
portacath
  • Wednesday's avatar
    Wednesday
    Member
    4 years ago
    Hi @Nightingale, no I have had it as long as I remember. It just wasn't this bad. I have EDS, and POTS seems to be its sidekick along with MCAS. It is hard to get diagnosed unless you are lucky enough to have a GP that knows about it and will refer you to a specialist. I have no idea why they are so reluctant to look into it.
  • Nightingale's avatar
    Nightingale
    Member
    4 years ago
    Hi @Wednesday I'm really sorry to hear you have been suffering too...I did a bit of research on POTS, do you know if yours was caused by chemo? The symptoms match what I have been experiencing but my onc is not convinced.There isn't a lot of info on what causes POTS. I have been feeling stronger the last couple of days, trying to eat more and I think my rapid loss of weight and low calorie intake was contributing to it. Do youn know if your POTS will ease after the chemo?
  • Wednesday's avatar
    Wednesday
    Member
    4 years ago
    Yes and pain down my arm. I can't stand up for more than a few minutes or walk very far but I think that's more from chemo and POTS than the port. The port is uncomfortable and in the way and I can't wait to get rid of it
  • Nightingale's avatar
    Nightingale
    Member
    4 years ago
    thanks @Blossom1961 will def look into that, maybe mine will ease around the 6 week mark. My onc is adamant that its not the porta cath but something else but he's not sure what yet. Maybe the physio I'm having will help long term.
  • Blossom1961's avatar
    Blossom1961
    Member
    4 years ago
    Hi @Nightingale I had a lot of nerve pain around my collarbone where they inserted the camera, for about six weeks after my port was put in, but nothing like you are describing. Three years on and I still get twinges in that area. Ask your Onco whether you are permitted to have a manual lymph drainage massage. It helped my body get back into focus as it works on the nerve system as well. Strange how the medical staff just shrug their shoulders and then ignore the problem when they don't understand something.
  • gumnut's avatar
    gumnut
    Member
    4 years ago
    Hi @Nightingale
    so sorry to hear of your discomfort following the portacath insertion, it sounds awful for you. I have a portacath but it hasn’t caused me any trouble. I hope that others may be able to provide you with some advice 
    Best wishes xx