Lobectomy 4 months on

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Hi everyone I had my lobectomy 8th November and was unlucky as if something could go wrong it did… left hospital 10 days later with drains still in situ…. 4 months on and I’m still having numbness under my arm and some nerve pain but the worst problem is shortness of breath when I try to walk anywhere… the Thoracic consultant says I have emphysema and gave me 2 inhalers which don’t work…the surgeon says it’s because I had a chunk of lung removed and it will get better with time and my GP hasn’t a clue but doesn’t think emphysema as nothing has shown up on any CT scans X-ray etc… has anybody else had a lobectomy and have severe shortness of breath? Sorry I rambled…

  • Just to add I had lymph nodes removed would that add to my breathlessness?

  • Hi nanny

    no, it shouldn’t affect your breathing (that I’m aware of) think it may be routine to remove some lymph nodes to exclude cancer spread. 

    Good morning lovely people. 

    2nd CT scan on 17 April this tear (R upper lobectomy Dec. 2022) recent scan has shown my middle lobe is compressed. Having bronchial lavage on the 23rd May. Letter to GP from consultant described it as possible middle lobe syndrome,  GP unsure what this is. Regular chest infections but one in December this year & a few weeks ago really floored me. Throat is quite raw & my voice is quite hoarse. Anyone able to suggest any ideas on what's going on with me ? 

  • Thanks Indian …. so no nearer an explanation

  • It sounds like you might benefit from a pulmonary rehabilitation programme, which helps you learn to breathe more effectively.  One of your specialists should be able to point you in the right direction.

    • Hi folks, I'm new here but was really interested in this thread. I had a lobe ctomy 7 weeks ago. Initially all was ok other than drain ended up being in for 4 weeks. Suddenly in week 2 pain increased and I became breathless. Everyone assumed was to do with irritation from the drain. However 3 weeks after it's removal I'm still the same. Took me a bit of persuading Drs to take it seriously and they're now sending me for a CT. I'm just wondering if there's  been any improvement in your breathing?
  • Hi Mash well I’m nearly 6 months post lobectomy now and still get numbness around my right breast and axilla also still got fluid on my lung but not enough to drain…. Still short of breath on exertiion but it’s better than it was…I am on a waiting list for pulmonary rehab and Cognitive Behaviour Treatment as I do tend to get anxious about walking anywhere and worry about parking close to wherever am going.. I have managed to get a Blue Badge which does help…my last CT showed a lesion on my liver so more investigationsWorried Good Luck with your CT Thumbsup

  • Hi Nannyto6,  sorry to hear about the lesion on your liver all the very best with that. Sounds like I've got some way to go  like you I get concerned about walking anywhere.  I'm trying to do lots of exercise at home to get my lungs working more efficiently and like you feel there would be benefit from rehab. Thank you for the reply I feel happier knowing someone else experiencing something similar. Wishing you huge luck and best wishes and thank you again for your reply.

  • Nannyto6

    had my lobectomy December 30th. Still get really breathless. Interestingly enough, I’ve been getting investigated for over a year with fatty liver, ? Pancreatitis ? Gallstones. I’ve had every scan going, keep changing the date for me to have ERCP as scans showing different things 

    Good morning lovely people. 

    2nd CT scan on 17 April this tear (R upper lobectomy Dec. 2022) recent scan has shown my middle lobe is compressed. Having bronchial lavage on the 23rd May. Letter to GP from consultant described it as possible middle lobe syndrome,  GP unsure what this is. Regular chest infections but one in December this year & a few weeks ago really floored me. Throat is quite raw & my voice is quite hoarse. Anyone able to suggest any ideas on what's going on with me ? 

  • Hi Indian sorry to hear that… it seems never ending with CTs MRIs ultrasounds but I’m sure we’ll get there …good luck

  • Hi Mash good to hear you’re doing exercises… I.also have been doing  breathing and rehab exercises from YouTube… we will get there I’m sureGrinning