Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?

Posted by jgreg1954 @jgreg1954, Nov 28, 2017

Phrenic nerve on the right side was destroyed due to radiation for breast cancer. Diaphragm is now paralyzed & taking away lung capacity. Anyone else experience this?

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Never give up. Be your own advocate. Will be praying for you!!

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Profile picture for busterwee @busterwee

Dr Dan McCarthy at UWMADISON

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Thank you! I was told there was nothing they could do for me. Maybe that's still true, but I can at least try!

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Can you tell me how or what your symptoms were because of the Phrenic nerve problem? I was told my diaphragm on one side doesn’t completely retract or contract.

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Profile picture for busterwee @busterwee

I had a paralyzed diaphragm but no pulmonologist recognized that was why I was continually sliding downhill - coughing, no energy, short of breath with any exertion, weight loss. It wasn't until my Thoracic Surgeon, who I was seeing after being found a candidate for a lung transplant, recognized that my mild fibroids could NOT be causing such extreme symptoms. He offered the chance to either go for the double lung transplant or try the Diaphragm Plication procedure to stitch it back in place. Much less recovery time, and a good chance it could relieve my symptoms enough to buy me as many years as a transplant. I had the surgery 27 June of this year - robotically! - at UW-Madison. My internal organs had been crammed and pushed - my stomach had moved under my rib cage - no wonder I could not eat and lost weight. In the two months since surgery, I can say it has been a true life-changer! I can garden, do laundry, walk, - no more napping the afternoons away and no more eating half cup of food at a time. My husband says "I got my wife back!" -- after over one year of just thinking I had to face a transplant or die. There are several tests they can prescribe which can verify that is the problem - but it's so much less invasive and recovery time is so short. I had about 5 incisions and drain tubes for a few days, but I am very healthy otherwise so my story may be different from others. By the way, I turned 74 in the hospital!

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Can you tell me who your doctor is?

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Profile picture for stellacammarano @stellacammarano

Hello... I am new here. My son was diagnosed with Peripheral nerve sheath cancer two weeks ago. He has since had surgery and it was removed. His CT and Mri scans are clear. There are so many contradictory information. If I could ask for any information that would be awesome.

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Welcome, @stellacammarano. You will find members talking about malignant peripheral nerve sheath tumors in this discussion found here:
- Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

Click the link and join the conversation.

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Hello... I am new here. My son was diagnosed with Peripheral nerve sheath cancer two weeks ago. He has since had surgery and it was removed. His CT and Mri scans are clear. There are so many contradictory information. If I could ask for any information that would be awesome.

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I had a paralyzed diaphragm but no pulmonologist recognized that was why I was continually sliding downhill - coughing, no energy, short of breath with any exertion, weight loss. It wasn't until my Thoracic Surgeon, who I was seeing after being found a candidate for a lung transplant, recognized that my mild fibroids could NOT be causing such extreme symptoms. He offered the chance to either go for the double lung transplant or try the Diaphragm Plication procedure to stitch it back in place. Much less recovery time, and a good chance it could relieve my symptoms enough to buy me as many years as a transplant. I had the surgery 27 June of this year - robotically! - at UW-Madison. My internal organs had been crammed and pushed - my stomach had moved under my rib cage - no wonder I could not eat and lost weight. In the two months since surgery, I can say it has been a true life-changer! I can garden, do laundry, walk, - no more napping the afternoons away and no more eating half cup of food at a time. My husband says "I got my wife back!" -- after over one year of just thinking I had to face a transplant or die. There are several tests they can prescribe which can verify that is the problem - but it's so much less invasive and recovery time is so short. I had about 5 incisions and drain tubes for a few days, but I am very healthy otherwise so my story may be different from others. By the way, I turned 74 in the hospital!

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Profile picture for nla4625 @nla4625

@watermann. I haven't heard about using stem cells to treat a damaged phrenic nerve or paralyzed diaphragm. Would you please post information about it? Thanks. I'm sure the 950+ on the facebook page for people with paralyzed diaphragms will be really interested in it too. I'll post it there or you might join the group and paste it there yourself if you're so inclined. It's a great group, and I've learned so much about this condition, dealing with symptoms, and treatment options. Using stem cells is a new to me intriguing possibility, and I wonder who is doing it and how it works. Thanks. Nancy

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@jwatermann @nla4625
You can stay up to date on Mayo Clinic’s advances in regenerative medicine and nerve regeneration on this website:
- Center for Regenerative Medicine https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/about

Neuroregeneration (stem cell therapy) is a focus area of study at Mayo Clinic. You can read more about it here: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration

There is a great deal of hope and a great deal of hype about stem cell treatment. There are many fraudsters out there. That is why Mayo Clinic offers a free consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of Mayo's experts.

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Profile picture for seniordon09 @seniordon09

I had cervical spine surgery 5 years ago it failed ! About 1 year ago the left side of my diaphragm got paralyzed. I am wanting to know if my breathlessness might be because my phrenic nerve might be damaged ?

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Thanks for the information !

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