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Have you heard of Phrenic Nerve Palsy?

ChristinanChristinan Posts: 5Member Connected
edited February 2018 in Disabled people
Hello to all, just signed up here. I had been informed that I have Phrenic Nerve Palsy, hadn't heard of it before but it showed up on an ultrasound scan. My diaphragm on one side is affected and has reduced my lung capacity causing breathlessness. I am on ESA but as much as I would like to work I am afraid that I wouldn't last because any exertion would result in fatigue caused by the breathlessness. Maybe someone could shed some light of this condition?

Replies

  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello Christina @Christinan and welcome to the community.
    I've never heard of Phrenic Nerve Palsy either  :) so I tried to look it up. I found nothing from the NHS and just the one site that referred to it specifically. It's a radiology site so may be a bit technical: https://radiopaedia.org/articles/phrenic-nerve-palsy
    What matters most is that you've come to a friendly community, a safe place, and there will be issues relating to your condition - whether about pain and pain management, benefits, aids and equipment or anything else - which some of our members know much about and for which the site has many resources.
    Perhaps you could have a look around, see if any of the links look interesting, and maybe tell us a little more about yourself and the impact on you of your condition. That will help us look for the best information and support for you.
    Don't hesitate for a moment to ask any further questions.
    I look forward to hearing more about you and getting to know you better.
    Warmest best wishes,
    Richard
  • ChristinanChristinan Posts: 5Member Connected
    Hi Richard, my DOB was 1958. I am awaiting a CT scan to find the causation. Have not been involved in any accidents. So perhaps there might be something impingement.
  • Han_SoloHan_Solo Posts: 114Member Courageous
    Welcome and good luck to you. This is a great place to find support and advice. All the best.
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello again Christina @Christinan. Lovely to hear from you. I get the distinct impression that phrenic nerve palsy (I've also come across the term phrenic never paralysis, which may be related) is something that not a lot of people know about. You might find something useful if you Google Phrenic Nerve Palsy.
    In the meantime, provided you feel happy to do so, can you perhaps tell me how it impacts on you, what effects it has on you? And clearly it has an impact on your ability to work, which is something else people here might be able to help with. I know that we have resources about ESA, for example, and have a benefits advisor.
    Warmest best wishes to you,
    Richard
    (Whose DOB was 1951  :) )
  • ChristinanChristinan Posts: 5Member Connected
    Hi Richard, as I mentioned before it makes me breathless. For instance if I go to buy food and I fill a carrier bag by the time I have walked home and up to my flat my breathing is laboured and I feel exhausted and it can take an hour or two to recover.
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hi Christina @Christinan
    and thank you for getting back to me. I noted the breathlessness but wondered if there was anything else going on at the same time. I'm genuinely here as a friend, trying to help, but unfortunately I'm no expert and have no medical qualifications.
    I took another look at the radiology site I mentioned earlier and it suggests that the condition can stem from a whole range of different causes. I think the best recommendation I can make is to consult your doctor and try to arrange a referral to see a specialist for information and advice.
    If you're having problems related to ESA, you might find something useful in this Scope resource; Employment issues, finances and ESA, link:
    https://community.scope.org.uk/categories/benefits-and-finances
    The following is concerned with neurological conditions http://https//community.scope.org.uk/categories/neurological-conditions/p1  and it would be worth scanning the other links on the site to see if there is anything there that rings any bells for you.
    I hope some of this will be of use to you and I will be here, listening, should you have any questions.
    Warmest best wishes,
    Richard


  • ChristinanChristinan Posts: 5Member Connected
    Hi Richard I was investigated by a cardiologist and they found some ectopics with occasional bradycardia but nothing warranting a pacemaker.  The professor who said it was Phrenic Nerve Palsy said it can come on suddenly due to a viral infection and sometimes due to an impingement. He mentioned that it most often there is a pretty benign cause that can lead to breathlessness on exertion. I have undergone an ultrasound to see wether the left hemidiaphragm is moving freely. Whilst undergoing the ultrasound scan I did not notice that the left hemidiaphragm was moving. So I am awaiting further investigations.
  • simoncsimonc Posts: 4Member Listener
    edited November 2018
    I've just joined. I have been living with phrenic nerve damage for about eight years now..Left side of my diaphragm doesn't work as it should. Would be happy to discuss with anyone 
  • ShaxxShaxx Posts: 8Member Listener
    Hi @simonc how have you been coping with your condition? I'm finding doing little things that require exertion difficult. So, for example  I ran for the train and when I got on the train I felt absolutely exhausted. I would have never felt like that before my phrenic nerve was damaged. 
  • megga1_56megga1_56 Posts: 2Member Listener
    I have phrenic nerve palsy. The pulmonary doctor said it was caused by a cardiac ablation to get rid of afib. I went down to 40% lung function. I have been off work for 6 months. Pulmonary therapy helped. I spent the first month in and out of the hospital. The Doctors and me thought it had to be cardiac related but much to my surprise my heart and cardiovascular system was about as good as can be at 57 years. But then at one ER visit, trying to figure out what was wrong they noticed a partial collapse of my right lung and stuck diaphragm on the right side. Riding high I think they said. If I laid down on my back it was like all the air in the room disappeared. I had to roll over on my right side to lay down.
    Anyway, it has been an ordeal. The excess fluid buildup in the right lung is a pain also. Pneumonia waiting to happen. But I am moving forward. May try to go back to work but I work in the oilfield so we'll see.
  • ChristinanChristinan Posts: 5Member Connected
    Maybe I am fortunate in that my breathlessness is only on exertion. Although I seem to have regular headaches on waking and think this is a symptom.  I am awaiting Pulmonary Therapy so fingers crossed I hope it helps me. 
  • megga1_56megga1_56 Posts: 2Member Listener
    edited August 29
    Cardiovascular / pulmonary exercise will help but I have found you have to stick to it or you will lose your gains. Trust me on that.
  • ShaxxShaxx Posts: 8Member Listener
    Hi all, 

    I hope that your situation improves over time. Phrenic Nerve Palsey / Parsonage Turner Syndrome is an awful thing to get as many Dr's do not have a clue about what it is and how to help. I got misdiagnosed so many times and ambulance came and did an ecg and said everything is fine and go to your gp. GP stated it was shingles, sprained shoulder, gall stones before they did a chest xray to see my left diagphram was raised. 

    It's now been 8 months since my attack and I must say my situation has improved vastly. I was given symbicort to help with my asthma (and was taken off qvar as it didn't work for me). I have also been referred to a physio as my shoulder blade on my back starting to Wing out.

    To test if your shoulder blade is winging out, lift both your hands over your head. , Start by having your palms on your thighs and then raising them in front of you (palms down) and then over your head so palms are facing forward (like the minute hand on a clock going from 6 to 12). If you have weakness in one arm then it's likely one of your shoulder blades is winging.

    Ask someone to record a video from the back whilst you do this and then from the side. If it is winging then physio can help. The exercises I need to do are with an arched back to try get the muscles inbetween the shoulder blade and back to regain strength. 

    I still have difficulty breathing under water. Swimming is difficult however it has improved. At least I can stay in the water now. Previously I had to get out and I couldn't breathe. 

    In December I will be eximined to see if there is any further improvement. If not then the surgeon may conduct nerve bypass surgery.... Sounds scary! 

    I'll keep you posted. 


  • Chloe_ScopeChloe_Scope Posts: 5,202Administrator Scope community team
    Thank for updating us @Shaxx!
    Chloe
    Online Community Officer
  • simoncsimonc Posts: 4Member Listener
    My problem resulted from a rather large tumor, 29cm wide that developed in my chest cavity that wrapped itself round my heart ,lungs and down in to my stomach.Went misdiagnosed for two years. Hodgkins lymphoma stage four.Load of chemo, 8 months  remission.open chest surgery ,then back again.More chemo , stem cell replacement therapy.and radiation.Take your pick , although I think the radiation caused the damage to my left side Phrenic nerve.No going in water higher than my waist or cant breath,no lying on my back same problem,bending down to my left is not a good idea.Being aware of every breath I take is by itself very tiring.In fact the whole experience is bloody tiring even trying to sleep,hence most nights I sleep sitting up in a chair.Would be very interested to hear from Shaxx about possible bypass surgery.Apologies for swearing,but after surviving cancer for the third time,yep, not content with HL twice I copped its cousin, Non Hodgkins lymphoma , more chemo and radiation ,back in remission 18 months,I think Ive earned the right to be slightly miffed.x
  • RoeRoe Posts: 3Member Connected
    Hi from Nz
    i am a year into having phrenic nerve palsy . joy of joys..and I'm still trying to get my head around what a life changer it is.
  • Chloe_ScopeChloe_Scope Posts: 5,202Administrator Scope community team
    Welcome to the community @Roe! It's great to have you here, please do let us know if we can do anything to support you. :) 
    Chloe
    Online Community Officer
  • Adrian_ScopeAdrian_Scope Posts: 3,858Administrator Scope community team
    Hello and a warm welcome to the community @Roe!
    Senior Online Community Officer
    Scope
  • ShaxxShaxx Posts: 8Member Listener
    Hi @Roe, have you found an improvement since the palsey struck?

    I'm lucky to have recovered by around 70% - I still cannot breath when I'm swimming nor can I hold shoulder stands or planks for more than around 10 seconds as I'm gasping for air.

    I recall I couldn't even bend down to do my shoelaces without getting out of breath! 
  • RoeRoe Posts: 3Member Connected
    Hi everyone 
    Thanks for the warm welcome. :)
    @Shaxx, no no improvement at all. I have residual bronchiectasis luckily (or Not!!)  in the left lung as well from a bout of pneumonia many years ago.
    Every thing is an effort but I'm so pleased to have found you guys.
    I discovered the spoon theory last week and have been using that to explain to my friends and family what it is like living with a paralyzed lung.
    I was beating myself up for coming home from work and needing to sleep for a few hours, when in reality I am still managing to work.
    This time a year ago, give or take a few weeks i was mid swing in the midst of renovating my new (old) house so its taken a bit to realise I may never finish my projects.
    so my baby ties my shoe laces and i tend  to wear gumboots whenever I can :) And I no longer walk everywhere, but its good to be alive :)
  • Chloe_ScopeChloe_Scope Posts: 5,202Administrator Scope community team
    Hi @roe, thank you for taking the time to share this with us all! 
    We are very glad to have you with us on the community. :)
    I have used the Spoon Theory for many years and love the concept. Like you said, it is a good way to explain to family and friends as well. 
    Hope to see you around!

    Chloe
    Online Community Officer
  • RoeRoe Posts: 3Member Connected
    Lol hi again forgot to say i am also being investigated for apaeno and initial tests are registering 53 a minute ..which seems weird  but as my dad died of sleep apaeno im happy  to follow spec recommendations which will be a trial cpap machine. 
    My gp called me a PERFECT STORM yesterday lol but im determined to live as long as i can even if im huffing and puffing. 
    So any tips for making this  sht easier..hit me up..
    Oh do you guys do a meet and greet some where on here?
  • Chloe_ScopeChloe_Scope Posts: 5,202Administrator Scope community team
    Hi @Roe, we currently don't do meet ups due to the large area that the community reaches. Please do feel free to have a look around and get involved with anything that takes your fancy!

    We always have a range of discussions going on in the coffee lounge, and we are always around to help. :)
    Chloe
    Online Community Officer
  • ShaxxShaxx Posts: 8Member Listener
    Hi @Roe, gosh I hope you improve and you can manage your symptoms. The best thing for me to help with my breathing was getting off qvar (brown asthma inhaler) and instead I now take symbicort. It's like magic with comparison to qvar which did nothing for me. I am asthmatic so the nerve palsey plus asthma don't go well but the symbicort did help me loads. Not sure if they do a meet and great. I'm sure someone in scope could answer that however.  I think people on here from all over the world! 
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