Phrenic Nerve damage

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?

Liked by Dee

@shilo14

I also had my right phrenic nerve sacrificed during my surgery for squamous cell thymic carcinoma. My invasive tumor was involved with both phrenic nerves, and as my surgeon tried to free the right nerve it was damaged; he opted to not attempt to disentangle the left phrenic nerve to avoid putting me on a ventilator for life. I was told the damaged nerve can regenerate at one mm per month. My surgery was six years ago and while my nerve never regenerated, I have regained some breathing ability through my body adapting.
I now have very well developed neck muscles and was told I also breathe with y newly developed muscles in my intercostal spaces (between my ribs). I tried some specialized breathing PT, but didn't see any benefits. I have progressed from needing 3 liters of oxygen 24 hours a day, to just using O2 at night for sleeping, as it is difficult to move air in the reclining position, to now just using a CPAP machine at night, which splints my right lung open so that the left lung can function more efficiently.
I haven't researched having a phrenic nerve transplant in several years, but when I did, it sounds like very difficult surgery and had a low success rate. I certainly have limitations due to my breathing issues, but I can live with them! I can't swim laps, or climb any hills, or exercise really hard – but I can hold my new granddaughter, I've attended two of my sons weddings, and life is good. I don't get the hiccups and when I shiver or laugh really hard I struggle to breathe, but I'm happy to be alive after initially being told I wouldn't survive.

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@shilo14 – What a great attitude you have! I particularly enjoyed thinking about you holding your granddaughter and attending your sons' weddings. When I read that if you laugh really hard you struggle to breathe; I can totally relate. The first time it happened to me, it actually occurred to me that I could literally laugh myself to death – which made me laugh just a little more thinking about it. But so far, at least for me, there hasn't been enough laughing to present a serious risk… but I'm keepin' my chin up. 😉

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I developed painful hand-foot syndrome during chemo (Taxotere). A year later, the skin has healed up, but still having residual tingling in hands & feet. Wondering if it will ever go away.

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Look up Dr. Kaufman in New Jersey. My Brother in law had shoulder surgery and his was damaged, and he was only breathing on one lung for 3 years after his phernic nerve was damaged. He was told there wasn’t anything they could do, but just hope it comes back. We found Dr. Kaufman and he takes a nerve out of your ankle and places it in place of the damaged nerve in the neck, now my brother in law is heeling fast and is breathing with both lungs.

Liked by Dee, Jennifer Hunter

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@giller198

I was diagnosed with a paralyzed right diaphragm back in January. I also have shortness of breath especially when I swim. I had open heart surgery back in September of 2016 and my heart doctor has ruled out phrenic nerve damage because of the time between the heart surgery and when this started. The doctors think I injured the diaphragm somehow and if I did I never had any pain or any other symptom. Has anyone read or had a surgical procedure that can be done to pull the diaphragm away from the lung?

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Look up Dr. Kaufman, he is a god sent on fixing the Phoenix nerve. He fixed my Brother in laws, he finds the bad section of the nerve and he takes a nerve from your ankle and places it in place of the damaged nerve in the neck. My brother in law is breathing with both lungs

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@jenniferhunter

@giller198 I hope you feel better soon. Fascial work is amazing. Have them show you how you can do some of it at home so you can progress faster.

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Jennifer, been doing the Bowen technique about two months now and haven't really noticed any change. I don't believe we have anyone in the town I live that is certified on Facial. Still swimming though and doing as much exercise as I can.

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@allisonsnow

@shilo14 You mentioned in your post you had a portable concentrater…do you also have the large machine you use in the house? I use tanks because my oxygen company said I couldn't have both concentraters. WHO said I am not sure…insurance co…medicare
I am not sure they are accurate. Travel would be so much easier with a poc !!! Even just to go to Mayo. My husband is very hesitant to travel anywhere using the tanks and/or hauling the big machine so we go no where.

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There is no reason to not travel by car with the tanks or even the big machine. I keep a spare tank in the car just in case I stay longer. Try not to put too many restrictions on yourself as we have enough already.

Liked by Dee, annhd1420

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@alison2

Hi everyone I am also going through this but my injury was due to an ablation and the doctor hit the phrenic nerve. there is a doctor in New Jersey who is doing a surgery to repair the nerve I’m not sure if you Google the phrenic nerve and New Jersey doctor it will come up. There is also a surgery where they can staple your diaphragm down but it’s very invasive. I have been told I need to wait at least a year to see if it is permanent, that normally it goes away within a year. crossing my fingers!!

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Happened to me feb 4 2019. They keep saying it will heal, first 2 days – to 1 month. Now they are saying 2 months. Fingers crossed as I have a hard time breathing and need oxygen to walk. Hope you have healed and did not need the year?

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Greetings, I am new to this group. I survived a ruptured appendix for three days and then pneumonia and sepsis in October 2014. January 2015, I was still lacking energy and no longer able to go up a set of stairs w/o having to stop. Long story short, 48% lung function. I live at a high elevation. Went on vacation at the shore. Within days, the head aches lessened, my energy level improved, nose bleeds stopped and the fog lifted. I am now determined to relocate to sea level. I am also going to look into Dr. Kauffman. Those familiar with his work, ANY idea what he charges? I know all surgeries are different, but a ballpark…… Thanks for reading. Looking forward to learning and meeting others with phrenic nerve damage.

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Hi there, does anyone know of a surgeon who can repair in the Toronto area? I was diagnosed with a paralyzed diaphragm and Im desperate to aggressively have it repaired if possible Thanks so much and best to each of you who have the same problem as me.

Liked by Dee

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@sumimasn

Hi there, does anyone know of a surgeon who can repair in the Toronto area? I was diagnosed with a paralyzed diaphragm and Im desperate to aggressively have it repaired if possible Thanks so much and best to each of you who have the same problem as me.

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Hi @sumimasn, welcome Connect.
I did a quick search for surgeons in Toronto and found this 2009 paper by 2 doctors at Toronto General Hospital, UHN
Acquired Paralysis of the Diaphragm https://www.thoracic.theclinics.com/article/S1547-4127(09)00070-X/abstract

TGH might be a good place to start. How did your diaphragm become paralyzed?

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@colleenyoung

Hi @sumimasn, welcome Connect.
I did a quick search for surgeons in Toronto and found this 2009 paper by 2 doctors at Toronto General Hospital, UHN
Acquired Paralysis of the Diaphragm https://www.thoracic.theclinics.com/article/S1547-4127(09)00070-X/abstract

TGH might be a good place to start. How did your diaphragm become paralyzed?

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The specialist I saw was t able to determine for certain, but believes it was from a prior motorcycle crash. I’ve had many crashes over years as I used to race and I never had my breathing tested. I tried to contact the doc who diagnosed me and he hasn’t got back to me for months and I just feel I want to move forward aggressively to see if I’m a candidate for the procedure. I’m a bit overweight and have been working hard in a running program, but I have to walk run because my breathing just won’t allow me to run. I used to run long distances when I was younger and I’m registered for some races and the rest of me physically would allow me to improve greatly if I could breath normally. Thanks for your help.

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@userunknown I've read about Dr. Kaufman and the website says he is the only one in the country doing that surgery for a graft of the phrenic nerve.. I know it's not convenient, but you have to consider how much your life could change with the right doctor. I also live in IL and tried to get several surgeons to help me for a spine problem and none would. I was refused 5 times before I came to Mayo which was a 5 hour drive for me, but it was worth it. You definitely need another opinion to determine if your phrenic nerve was damaged because you will not get that from your current doctor. I had a similar situation once when I had carpal tunnel surgery that didn't fix the issues because they missed that I had thoracic outlet syndrome and the surgeon wanted nothing to do with me. He wouldn't even sign for physical therapy and claimed he wouldn't be able to judge if it would help or not. As far as he was concerned, his job was done, and he didn't want a poor outcome. One of the symptoms of TOS is impaired circulation that makes hands turn blue and cold which is what I was telling the doctor was happening. He took my pulse, said it was fine and accused me of malingering in his notes. I had to get another opinion from a doctor who was familiar with TOS and I did get a diagnosis and help. Carpal tunnel and TOS have overlapping symptoms.

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@jenniferhunter

@userunknown I've read about Dr. Kaufman and the website says he is the only one in the country doing that surgery for a graft of the phrenic nerve.. I know it's not convenient, but you have to consider how much your life could change with the right doctor. I also live in IL and tried to get several surgeons to help me for a spine problem and none would. I was refused 5 times before I came to Mayo which was a 5 hour drive for me, but it was worth it. You definitely need another opinion to determine if your phrenic nerve was damaged because you will not get that from your current doctor. I had a similar situation once when I had carpal tunnel surgery that didn't fix the issues because they missed that I had thoracic outlet syndrome and the surgeon wanted nothing to do with me. He wouldn't even sign for physical therapy and claimed he wouldn't be able to judge if it would help or not. As far as he was concerned, his job was done, and he didn't want a poor outcome. One of the symptoms of TOS is impaired circulation that makes hands turn blue and cold which is what I was telling the doctor was happening. He took my pulse, said it was fine and accused me of malingering in his notes. I had to get another opinion from a doctor who was familiar with TOS and I did get a diagnosis and help. Carpal tunnel and TOS have overlapping symptoms.

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@jenniferhunter My daughter's hands and feet turn blue/purple along with big red splotches all over her body. We were told it was Raynaud's Syndrome. Now, I wonder if it isn't something more.

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@windwalker

@jenniferhunter My daughter's hands and feet turn blue/purple along with big red splotches all over her body. We were told it was Raynaud's Syndrome. Now, I wonder if it isn't something more.

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@windwalker My hands and forearms still get blotchy and if my symptoms get kicked up because of overuse of muscles, my hands can still get a bit cold, but they don't turn as blue any more. Right now they have a mottled appearance on my palms, and yesterday in physical therapy, I was doing exercises to strengthen muscles around my shoulder blades and I ache a bit today. In TOS, the front of the chest is too tight, so you try to loosen the front, and strengthen the muscles in back in the shoulders to hold the shoulder where it belongs instead of it going too far forward. My suggestion would be to look into physical therapy with Myofascial release with a therapist who is familiar with TOS. Thoracic outlet syndrome (TOS) is entrapment of the nerves and vessels where they pass through some small spaces in between the collar bone and rib cage. There are similar types of issues that can happen in the pelvis because of alignment. MFR can loosen things and get it back into better alignment. Our habits of computer and screen time and the posture that goes with it is a contributing factor to a problem like this. Here is the discussion on MFR with lots of information. That would be conservative and it might help. MFR helps a lot of things and gets the body moving again as it should. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@userunknown Do you think that physical therapy may help? There are physical therapists who specialize in breathing issues. I haven't had your experience, but my breathing has been physically affected by issues because of thoracic outlet syndrome causing muscle tightness through my chest so it doesn't expand properly on one side, and having asthma and allergies doesn't help. My PT has done some muscle releases and also diaphragm releases that helps my chest move better with breathing. This may be something to ask your doctor if you could benefit from something like that or if it would be risky because of the cancer. Have you been seen by a pulmonologist? They may be able to render an opinion as to why the diaphragm is in a stuck position and if inserting a breathing tube could possibly damage the phrenic nerve. I imagine that might be a hard question to answer. I certainly understand that you are in a difficult position and hope you can find some answers.

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