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Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?
Lung Health | Last Active: Jul 10 3:56pm | Replies (198)Comment receiving replies
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!!
Replies to "Hi everyone I am also going through this but my injury was due to an ablation..."
It has only been three months but I also have heart issues so now I am considered handicapped. I can barely walk anywhere it has definitely put a damper on any level of activity I wish to have. I cross my fingers and hope within the next nine months that it returns to normal function. The ablation also doesn’t seem to have worked so I have no tolerance for any type of activity ☹️.
Good morning Alison,
At three months I was still extrememely breathless also. I had constant oxygen and even then struggled if I went out on the deck or tried to walk in the yard with my portable POC. Don't lose hope; it does get better.
My heart rate still gets extremely high as my heart struggles to help keep me oxygenated. I'm on extended release Metoprolol to lower my racing heartbeat.
I have very low blood pressure, so it is a balancing act as Metoprolol also lowers your blood pressure.
I am sorry to hear that you are dealing with so many issues. The damper on your activity level has to be difficult. Was the ablation to deal with a rapid heart rate?
How are you dealing with these changes in your lifestyle?
Teresa
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
@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.
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!
what great news !!! weaned off oxygen... that is a big step !!!
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?
They can put in a device like a pacemaker, it’s a nerve stimulator, for some cases. It is very successful in helping treat phrenic nerve damage.
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@alison2
How long has it been now, Alison? I will cross my fingers (and pray) on your behalf as well!
Teresa