diaphragm nerve damage

Has anyone had any nerve damage due to an ablation or other surgery? My nerve was damaged in a sinus node modification and only one side of my diaphragm is working now. The doctor said it could take a while to heal. I can not lay flat because I get so short of breath. I just got a pacemaker last week and still trying to get used to that. This just makes matters worse. Anyone know how long this will be like this?

3 Comments

Paralyzed Diaphragm

by SMITTY - 2009-05-07 08:05:29

Hello Nat36,

I have a paralyzed diaphragm on the right side, but mine is not from an ablation. I had an injection to deaden a nerve to stop me from feeling the shocks that my pacemaker was causing. The injection stopped the pain from the shocks but it apparently deadened the phrenic nerve and caused the paralysis of my diaphragm. I, so far, have no trouble lying on my back but if I bend over to where my head is lower than about a 45 degree angle I find my self extremely short of breath. The SOB is due to the paralyzed diaphragm letting internal organs press on the bottom of my lung. My problem started almost 3 years ago and doesn't seem to be getting any worse, thank goodness.

Of course during that time I have read about anything I could find on paralyzed diaphragms and one thing that stood out was that if improvement in the condition was going to occur it would probably be within 6 months or possibly a little longer. If the problem does not correct itself there is a surgery to not solve the problem but to give relief from the problem.

From what I can tell they in effect take up a fold in the diaphragm and suture it down. This takes out the exess slack in the diaphragm and stops problems like I have. It is a delicate surgery and not usually recommended for people my age (80 next week) that are having no more problems than I have right now. All I have to do is not bend over, stand straight and sit straight.

For you, I say rely on your doctor for advice on your recovery progress and hope you are back to normal in a few weeks.

I wish you good luck.

Smitty

nerve damage

by nat36 - 2009-05-08 01:05:29

Angelie,

I guess I did not complete my profile but I am 36:)
I had a heart infection when I was pregnant with my son twelve years ago and it caused my heart to stay fast. For years it was just fast and I took toprol to help slow it down but then it started going slow sometimes. My EP doctor said that maybe if we do a modification of the sinus node it would help everything. Well I sure wish I had not done that, but I did about three weeks ago. Afterwards I felt awful! I'm like you the shortness of breath sometimes is so overwhelming! I also had horrible headaches and my heart rate was all over the place. I went for a monitor check up and the doctor said that my av node was taking over most of the time and that was why I felt so bad. I was also having long pauses so he said I needed a pacemaker. I went in the next day( which was last Friday) and he put in a pacemaker under the muscle. I was awake because during the ablation I responded very badly to the medicine to knock me out so he didn't want to give that to me again. So I only got a local. It still hurt when he cut through the muscle. During that surgery was when he noticed that one side of my diaphragm was not working and that the nerve had been damaged. He told me that it could take up to a year to heal! He said that my diaphragm nerve was sitting on my heart and it got ablated also! It sounds like it really never fully heals from what I have been able to read. That is so discouraging because like you said it is awful! Since the pacemaker I feel better but still not right. I have a rate responsive pm and it seems like everytime I move it jumps my heart rate up. Like sitting here now typing it is 104. So I don't know if that is my heart or the pacemaker. I can also tell sometimes that the av node is still taking over at a high rate so the pm does not stop it. I just feel like I will never be myself again!!
I am not sure how to look at your profile to send a message directly to you but that would be great. I feel like I am going insane most days lately. Everybody seems to think now that I have the pm all is well but it's not! Thank you for your advice.

So sorry......join the club

by Angelie - 2009-05-08 11:05:45

I tried looking to see how old you are, but since you've listed 1870 as your year of birth....it's hard to tell. LOL. I'm 33.
I've had 5 ablations. Others reading this reply, are probably tired of me typing that, but hey what can I say....it's the truth.
Out of my 5 ablations, only one didn't have such a good ending.(phrenic nerve damage), the other just plain didn't work....or worked for a while until symptoms returned again.
My doctor accidentally brushed up against my phrenic nerve with a negative 82 degree cryo-ablation cath. He said that my anatomy is a little askew and he wasn't expecting my nerve to be in that spot at all.
This occurred on April 25, 2008, and I am still recovering from it. It was GOD AWFUL the first few weeks. I thought I knew what shortness of breath was all about that is until this happened. My goodness it was horrible. For the first time in my life, I felt like I needed a disabled parking permit because I couldn't even walk without stopping along the way to store fronts. It, oddly enough, felt like someone had gone in and rearranged all of my internal organs. Sneezing, coughing, laughing, and hiccups hurt. Believe me, I know everything that you're going through. Trust me.
My doctor has always stated that it will improve. He has been right, but it has taken a lot longer than both of us expected.
I am a singer and for a while the effects of phrenic nerve damage were absolutely devastating. Having been through previous ablations, I didn't even realize that this could happen. My heart rhythm problems continued, but my doctor and I were unwilling to risk further damage to my phrenic nerve so we decided to overload me with betablockers and implant a pacer to counteract the bradycardia that the drug caused. That was in 8/08. I've since had 2 other ablations without any problems. I am very blessed to have a concerned, diligent, doctor, and he paced my diaghragm throughout the last two procedures just to make sure he stayed clear of that area. It's like having hiccups for hours, but it works. The very second my diaghragm doesn't jump- he stops ablating, and moves to another area.

It's going to take a while. I would say a year. I will always have diminished lung capacity in my right lung, because I have difficulty drawing air to the very bottom of my right lung. The good thing is- people can function completely well with one lung.

I used to cry in bed at night as I would lie there and feel the lack of motion from my right side. It's very disheartening, and I kind of got a glimpse of what paralyzed victims must feel. It's very strange to suddenly not have control of your body.

I know that there's not a lot out there about this. I've looked everywhere. Please feel free to ask me anything, or vent...or whatever....anytime. Send me a private email, and I'll do what I can to help ya out. It's tough....I know.

Here's something that might cheer you up:
8 months after my phrenic nerve damage, and 4 months after my pacer implant- I ran my first ever 5k in 39 minutes. Crappy time- but wonderful for me......

Smile, and count your blessings. Stay positive, you have to....if anything to stay sane through all of this.

Angelie

You know you're wired when...

Your favorite poem is “Ode to a Cardiac Node”.

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In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.