hi does anyone know what the result of having your Phrenic nerve removed

I also lost a phrenic nerve because it was attached to a thymoma that had to be removed six years ago. And, like you, I have Myasthenia Gravis. I had a crisis after the surgery that kept me off and on a ventilator for almost two months. I was head of a small nonprofit and returned to work full-time. However, I decided to retire from the position about two and half years later. I am a consultant and work between half and three/quarters time. The primary reason I left that job was the myasthenia gravis - which affected my left eye, speaking and swallowing when I became tired. Infections and stress made these symptoms much worse. The MG is largely under control with the help of immune suppressants and occasional help from prednisone and Mestinon. The loss of the phrenic nerve primarily affects my sleep and secondarily my breathing. I had sleep apnea before the loss of the nerve and this became much worse. When I sleep on my left side, I awake in a panic because I can't breathe. I just went through another sleep study and have been put on a bi-pap at night. The bi-pap more closely mimics the way our lungs work. I am also now on stronger asthma medications that will help me breathe better when the weather, dust, pollen etc. affect my lungs.

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.

hi thank you for the reply

.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

Jane:

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.

P

thank you once again for your reply .like you my consultant thinks i needs to have my lung drained .but there seems to be little or no link between the consultant and my surgeon .i have been waiting 2 weeks for a

phone call to say if or when they will drain my lung .x

Jane:

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.

P

i have been thinking the same . i called the consultant and left a message for him to call me asap .to be honest it seem that the surgeon is the problem .i know my consultant or my gp where not happy with the way things where left .there had been no radiotherapy arranged and i was sent home from hospital when i was being sick all the time and was having problems breathing . so fingers crossed i hear something soon

thanks again jane x

OMGoodness you need Dr. Matthew Kaufman in Shrewbury N.J. He is a phrenic nerve reconstruction specialist. Google it... This guy is the only guy in the world that does this and is having great success. My husband had his phrenic nerve replaced and we are waiting on regeneration they say can take 10 months to a year, June is the 10 month mark we are hoping to hold them to that lol. They also put a diaphragmatic pacemaker on his diaphragm until that nerve regenerates. Please get hold of this place... I believe they can help you... Phone 732-741-0970 dr. Matthew Kaufman 535 sycamore ave. Shrewbury, NJ 07702