hi does anyone know what the result of having your Phrenic nerve removed
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i had surgery to remove my thymus and a tumour in my chest.i have an illness called Myasthenia Gravis. when the surgeon was operating on me he found that the tumour was attached to myPhrenic nerve and he had to remove that also .i have had lots of problems with my breathing and eating and drinking .can any one please give me any imfo re this .will i have problems breathing for the rest of my life ..i work in a district nursing team as a health care assistance and my job is both very busy and involves dressing legs which is for the most part very hard going .i am not sure i will be able to return to work x
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PkOH
Posted
I believe the myasthenia gravis has been a greater challenge for me than the loss of a phrenic nerve. Having a good doctor with lots of experience with MG and who follows your MG closely is a must, particularly because surgery and anesthesia can potentially trigger a crisis. It's also been important for me to have a good internist who can address infections quickly, understands which antibiotics are dangerous for MG patients and stays up overall on drug interactions.
I also make sure I get regular exercise. I use the eliptical and lift weights. When I'm too tired or out of breath to do anything strenuous, I rest but also try to fit walks into my schedule. I have no proof but I believe having a regular exercise schedule has helped me to reduce infections, have more energy and manage my MG symptoms.
It sounds like your job is physically demanding and may be too much of a challenge, at least until your MG is under control. I wonder if there is something less demanding you could do for a time until you get the MG under control and learn what you need to do to adjust to the loss of your phrenic nerve. Your issues could qualify you for some forbearance due to the disability you are experiencing.
I hope these ideas have been helpful and wish you the best in your recovery and management of your MG and loss of phrenic nerve.
janemadd
Posted
.i wont be returning to work for at least 3 months as yet as the problems i am having with my breathing .i am worried about returning to my job and what i will be ok to do ect .i work for the nhs so i am hopeful that i will have all the support to carry on in my post or move to work some where different. do you still have a problems with your breathing .
thank you again for your reply jane
PkOH
Posted
No, except for issues associated with asthma and sleep apnea. It doesn't pose problems for me with daily life. I hope someday soon you'll be doing so well you won't even think about it.
I did have problems right after my surgery due to plural effusion - for some reason it didn't resolve itself, so they drained my lungs and that night I couldn't swallow my medication. I ended up in the hospital, got plasma pheresis, was put on a ventilator - also had IVIG. I believe the problems I had could have been prevented if my neurologist, surgeon and hospital had been working more closely together and had more knowledge about MG.
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janemadd
Posted
phone call to say if or when they will drain my lung .x
PkOH
Posted
Looking back, I would have demanded that my neurologist talk with my surgeon including the hospital where I had the surgery. I ended on and off a ventilator for 6 weeks due to the muscles around my lungs failing, then C. diff and a hospital acquired infection (because I was immune suppressed through major doses of prednisone) then sent to a rehab hospital for a few weeks to wean off the ventilator. I would encourage you to do whatever you can - make a major nuisance of yourself if you have to - and avoid the same sequence of events that led to my MG crisis.
If your neurologist isn't paying attention to you and you can get one that will pay attention, that would be another option.
I know it's hard to fight for yourself when you feel bad. If you have someone who could help you advocate for yourself, that would be a big help.
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janemadd
Posted
thanks again jane x
beverly13771 janemadd
Posted
janemadd beverly13771
Posted
Thank you for replying to my post . I live in the uk so would be unable to use the consultant you have written about . Thank you for your input . It is truly appreciated x