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jgreg1954
@jgreg1954

Posts: 2
Joined: Nov 29, 2017

Phrenic Nerve damage

Posted by @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 usmccam

REPLY

Hello again. Dr Matthew Kaufman has interesting and helpful insights for people of all ages with phrenic nerve damage. I await your reply if you read more about the successes he and his staff have had. Linda

@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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good afternoon everyone. My right phrenic nerve was damaged (paralyzed) during surgery to remove a Thymic tumor. My lungs were seriously damaged from the intense radiation I had following surgery. I am on oxygen 24/7. The rest is a long story you can check my history. But I definitely know how losing your ability to be as active as you were is difficult to accept. Keep pushing your self I disconnect once in awhile (on good days) just to get a break and I go out to my garden etc. I also take metoprolol and also captopril to TRY to keep my heart in check it still hangs around 100-110 consistently with some variations and I also have just recently been having a lot of problems with my blood pressure after being on the medication for years. You can find ways to be more active and to adjust your breathing. My problem is my mind doesn't always accept my limits and I push myself to hard but most time its worth it. I have a roller coaster of a journey because with all the struggles I have also been blessed. Look hard enough and you can find some good. Just seeing the sun shine and NO RAIN RIGHT NOW is a blessing. We were lucky and only a bit of water in basement considering what some areas around us look like! Sorry to be so short but have to run. will check back in later

@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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@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.

@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 a granddaughter !! how wonderful I have 5 incredible adorable grandsons two of whom were born after my prognosis of 6? months…it has been 9 years!!!! Even with the struggles I wouldn't give up one day! We just have to find quieter activities sometimes.

It has been determined between my heart surgeon and pulmonary doctor to much time elapsed from my heart valve surgery to when I started having breathing issues. It was about a fourteen month time interval. The doctors have ruled out phrenic nerve damage. Somehow I must have been doing something that caused damage with that right diaphragm.

@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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Good morning Allison, I am for now weaned off oxygen. Previously, I had a large tank of liquid oxygen that NORCO would come and refill regularly. I could charge (fill) a portable backpack to take with me in the car. But for plane travel or extended travel to MD Anderson they'd assign me a POC. I would reserve both the portable oxygen concentrator and the batteries and the ac/dc adapter cord ahead of time and return it when I got back in town. For airline travel I had to complete paperwork (specific to each airline) and travel with enough charged batteries to cover my plane time. Much easier and safer than traveling with tanks. Sorry I've been so late to respond, we've attended a family reunion and then had company. Lovely time!

@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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Yes! Nine years! It is wonderful to hear that you are are still here and enjoying life! That is how I feel, just truly grateful to be able to experience what I still can, even if my reality is that I will not ever regain my ability to hije, bike, swim, and even just walk very far at all. I wasn't given any hope, and here I am.

@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 I was happy to read your post that you went on an enjoyable vacation and hade a family reunion! Anytime you can get back a semblance of normal life is great for moral, even hearing about how others with the same health issues are successful at leading a "new" normal life is encouraging ! I plan on planting a few more perennials in the garden by the house. I work in my garden (even those further from the house) in several ways. My hose reaches about 2/3 down my garden or I tank a small tank out with me or on a good less humid day I go with out. Of course how long I stay out depends on how I feel and what method I use.

Sometimes I wonder if I am encouraging anyone or not with my life? It is great I have survived this long but can be difficult for the patients newer to this type of condition?injury? to accept this will be your new normal. I think it helps me to focus on what a gift I have been given just to be alive rather than what a struggle my life is. Most days my life is great ! It has taken me a long time to get to the point of speaking freely about my life at all and I think writing it down helps ME as much as anyone. What do you think?

@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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what great news !!! weaned off oxygen… that is a big step !!!

I just had shoulder surgery and was given a nerve block. I had trouble breathing and waking up. I was in recovery for about 6 hours and received a breathing treatment. I was just reading about Phrenic Nerve Damage and am wondering if that is what caused my problems. I am still having trouble breathing. I also noticed the symptoms for toxicity are what I have been having. Has anyone else had this happen from a nerve block.

@ssbionicknee

I just had shoulder surgery and was given a nerve block. I had trouble breathing and waking up. I was in recovery for about 6 hours and received a breathing treatment. I was just reading about Phrenic Nerve Damage and am wondering if that is what caused my problems. I am still having trouble breathing. I also noticed the symptoms for toxicity are what I have been having. Has anyone else had this happen from a nerve block.

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@ssbionicknee, when was your surgery? Have you talked to your surgeon about your ongoing respiratory issues?

@colleenyoung

@ssbionicknee, when was your surgery? Have you talked to your surgeon about your ongoing respiratory issues?

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Hi @colleenyoung. My surgery was Wednesday. I have some random memories of the surgery and I was in distress. I remember a man came to give me a breathing treatment and he was upset that they called him. I was in and out of it. I remember him telling me I needed to see a specialist and that this was not normal. I also remember being in the OR and being shaken a lot and hearing them try to wake me up. The doctor never said anything to my friend when he talked to her. I have really been out of it and my head is just starting to clear up. I was sedated with Versed and Fentanyl. I have had trouble waking up from Versed in the past so the combo really knocked me out. That is noted in my charts and I told the doctor that before surgery. This is the first time I have had trouble breathing. I have also been feeling sick to my stomach. I have had a metalic taste in my mouth, my ear felt fuzzy, and I have had sweats and chills. They are trying to play it down like I just had some trouble waking up and breathing. I need to know what really happened that day. I need to see a specialist about the hypoxia and then I am trying to figure out where to go from there. I really could use some advice.This was not at the Mayo Clinic. I am a long way from there. I also had a total knee replacement in May and it went well and I was alert afterwards.

@ssbionicknee

Hi @colleenyoung. My surgery was Wednesday. I have some random memories of the surgery and I was in distress. I remember a man came to give me a breathing treatment and he was upset that they called him. I was in and out of it. I remember him telling me I needed to see a specialist and that this was not normal. I also remember being in the OR and being shaken a lot and hearing them try to wake me up. The doctor never said anything to my friend when he talked to her. I have really been out of it and my head is just starting to clear up. I was sedated with Versed and Fentanyl. I have had trouble waking up from Versed in the past so the combo really knocked me out. That is noted in my charts and I told the doctor that before surgery. This is the first time I have had trouble breathing. I have also been feeling sick to my stomach. I have had a metalic taste in my mouth, my ear felt fuzzy, and I have had sweats and chills. They are trying to play it down like I just had some trouble waking up and breathing. I need to know what really happened that day. I need to see a specialist about the hypoxia and then I am trying to figure out where to go from there. I really could use some advice.This was not at the Mayo Clinic. I am a long way from there. I also had a total knee replacement in May and it went well and I was alert afterwards.

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@ssbionicknee I might suggest that you call Patient Relations or the Patient Experience Office at the hospital where you were treated.

@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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@giller198
Hello, I saw your question about mobilizing the diaphragm and my physical therapist has done this with me and I breathe better after treatment. You might just have a physical problem with breathing since they ruled out a nerve problem. A lot of doctors are not aware of how fascia works since it hasn't been in the news until recently. I also swim which helps my lung function.

I've had some breathing problems with not using the lower portion of my left lung and for me it seems to be due to thoracic outlet syndrome which causes tightness through one side of my neck and chest to my hip which interferes with expanding my rib cage properly on that side and I have asthma, and that can make me breathe using neck muscles and the upper parts of my lungs. Sometimes ribs twist a bit because of the tightness. This problem causes phlegm to be hard to expel and that leads to one sided chest infections on the left side. I have a great physical therapist who is also expert level in myofascial release work trained in the John Barnes methods. My PT has manually released the tightness in my diaphragm to get it moving properly again. It's basically stretching the fascia similar to the way a Yoga stretch works. Having surgery creates scar tissue in the fascia, which creates tightness and adhesions. The lung tissue itself is nearly all fascial tissue and blood supply. If you haven't tried this type of therapy, it may be beneficial.

I had spine surgery at Mayo around the same time as your surgery, and the scar tissue increased the issues with thoracic outlet syndrome compressing nerves to my arms, and because I was in a neck brace for 4 months, I had to stop my physical therapy for awhile, but I have made progress again. TOS creates nerves trapped by the pressure of going through small spaces in-between the rib cage and collar bone and is made worse by poor posture like slouching with a forward head position. Forward posture also compresses the chest a bit. TOS causes tight muscles in the side of the neck, and because my spine surgery incision is very close to that area, it increased tightness which pulls everywhere.

I've worked with the MFR therapy for 4 years for TOS (which was interrupted by spine surgery) and it takes time to work through the layers of tight tissue. There are a lot of ways to self treat and I can feel the fascia pull from my neck down through my hips to my feet. It really is a network of webbing that interconnects everything in your body, and researchers now are starting to recognize it as another organ that they are calling the interstitium. The living fascia changes from a semi solid to a liquid state as it stretches and reforms itself. When you see the cob-web stuff when skinning a raw chicken, you're looking at fascia. The muscles are bound by the fascia that weaves through them which interconnects about everything in the body and tight fascia stops things from moving correctly and changes body alignment. I have not seen a physical therapist specializing in lung function. On days when my neck is tight and feel the pull of my surgery scar, I just stretch it out.

You can find information on MFR at https://myofascialrelease.com/. The website has a list of therapists, but you can also call Therapy on the Rocks (John Barnes practice) in Sedona, AZ and ask for names because not everyone pays to be listed on the website.

Here is some research about fascia https://myofascialrelease.com/downloads/articles/Structure_and_Distribution_interstitium_human_tissues.pdf

@jenniferhunter

@giller198
Hello, I saw your question about mobilizing the diaphragm and my physical therapist has done this with me and I breathe better after treatment. You might just have a physical problem with breathing since they ruled out a nerve problem. A lot of doctors are not aware of how fascia works since it hasn't been in the news until recently. I also swim which helps my lung function.

I've had some breathing problems with not using the lower portion of my left lung and for me it seems to be due to thoracic outlet syndrome which causes tightness through one side of my neck and chest to my hip which interferes with expanding my rib cage properly on that side and I have asthma, and that can make me breathe using neck muscles and the upper parts of my lungs. Sometimes ribs twist a bit because of the tightness. This problem causes phlegm to be hard to expel and that leads to one sided chest infections on the left side. I have a great physical therapist who is also expert level in myofascial release work trained in the John Barnes methods. My PT has manually released the tightness in my diaphragm to get it moving properly again. It's basically stretching the fascia similar to the way a Yoga stretch works. Having surgery creates scar tissue in the fascia, which creates tightness and adhesions. The lung tissue itself is nearly all fascial tissue and blood supply. If you haven't tried this type of therapy, it may be beneficial.

I had spine surgery at Mayo around the same time as your surgery, and the scar tissue increased the issues with thoracic outlet syndrome compressing nerves to my arms, and because I was in a neck brace for 4 months, I had to stop my physical therapy for awhile, but I have made progress again. TOS creates nerves trapped by the pressure of going through small spaces in-between the rib cage and collar bone and is made worse by poor posture like slouching with a forward head position. Forward posture also compresses the chest a bit. TOS causes tight muscles in the side of the neck, and because my spine surgery incision is very close to that area, it increased tightness which pulls everywhere.

I've worked with the MFR therapy for 4 years for TOS (which was interrupted by spine surgery) and it takes time to work through the layers of tight tissue. There are a lot of ways to self treat and I can feel the fascia pull from my neck down through my hips to my feet. It really is a network of webbing that interconnects everything in your body, and researchers now are starting to recognize it as another organ that they are calling the interstitium. The living fascia changes from a semi solid to a liquid state as it stretches and reforms itself. When you see the cob-web stuff when skinning a raw chicken, you're looking at fascia. The muscles are bound by the fascia that weaves through them which interconnects about everything in the body and tight fascia stops things from moving correctly and changes body alignment. I have not seen a physical therapist specializing in lung function. On days when my neck is tight and feel the pull of my surgery scar, I just stretch it out.

You can find information on MFR at https://myofascialrelease.com/. The website has a list of therapists, but you can also call Therapy on the Rocks (John Barnes practice) in Sedona, AZ and ask for names because not everyone pays to be listed on the website.

Here is some research about fascia https://myofascialrelease.com/downloads/articles/Structure_and_Distribution_interstitium_human_tissues.pdf

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Great information, @jenniferhunter!

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