Phrenic Nerve damage on top of everything else.

[Sljp0000]

Morning all

Please help me pick the bones out of this one.

Just wondered if anyone on here had their Phrenic nerve damaged during their open heart surgery? I saw my Thoracic surgeon yesterday, and he said it was quite common, but I've never heard anyone talking about it on here. It causes paralysis of the diaphragm, which in turn causes it to push high on the lung, reducing breathing capacity. It's not a great feeling.

I have to make the decision in the next few months what to do.

I can have nerve repair surgery, which is 60-70% successful and my diaphragm would work properly again.

I could have a plication where they pull the diaphragm down and tie it in place creating lung space but the diaphragm would never work properly.

I could pay $30k - $65k to have a pacemaker fitted on my diaphragm. (!!!) (They did the damage, shouldn't they pay for it??!)

You might think this isn't a hard decision but:

I had severe blood clots (saddle PE) after my CABGX3 which nearly ended it all.

I'Ve had numerous tests to find out why I had the clots after surgery but nothing in my blood works is showing so obviously they can't prepare for what happened before other than the normal protocols. They're not sure this would prevent clots in the future but have no idea how to deal with me.

My CABGX3 FAILED as soon as it was done. I had internal bleeding for hours after surgery which they had to stop with blood clotting drugs. My Thoracic surgeon thinks this is why my grafts got blocked straight away but NOT why I had PEs.

I therefore had to have 4 long stents a few months after surgery. It was an intense, hard procedure which took over 3 hours.

If I leave the problem my lung capacity could deteriorate over time making me dependent on Oxygen for life.

I've been told i have a much higher chance of having a HA, stroke or PE's on the operating table than most because of my history amd obviously only i can make the decision to go ahead.

I feel like I'm stuck between a rock and a hard place.

I'm getting really random chest and throat pains. Is it anxiety or are my stents now failing too? I feel in such a mess.

On top of this news I had to have my precious dog put to sleep this week. #heartbroken. 💔 Not coping well, Barney was such a blessing to our family, especially throughout my illness.

Struggling to cope with what the last 8 months has thrown at me. Feeling low. I really don't know what's going on in my body. I've told the medics/GP how I feel but I don't think they've ever come across anyone with so many complications as I've had and they don't really know how to deal with me.

Try to be brave and just get on with things but its hard.😪

On the plus side I'm pushing to walk 3 miles per day and eating well but I feel its not going to be long before I crumble in a big heap. I can't have any drugs to help with my anxieties because of my health problems.

Sorry for the the ramble.

Love Susie x

[Deejay62]

Good morning Susie so sorry you are going through so much problems even after your operation. I would be feeling exactly like you do. I don’t know much about your operations but from what you’re saying you seem to always have a tough time. You shouldn’t have to pay for anything, I know we take a chance with every procedure but deep down we don’t expect things to go wrong, especially after the surgeon speaks to us and recommends these procedures. I’ve heard about CABG procedures on here before, so hopefully someone will come on and be able to help. I think you will need counselling. If you can contact your doctor you should get them to arrange that because you have been through a lot. Sorry to hear about Barney on top of everything else. You are going through a lot. You also need to mention the chest pain to your doctor and if they can’t give you an appointment call 111. I hope it all goes well

[Sljp0000 in reply to Deejay62]

Hi, thank you for replying. Our were the only one! (Why do some people get so many replies??!!)I've been telling my GP and Thoracic Surgeon about my pains and I will be having further tests before they can even contemplate diaphragmatic surgery. And I've referred myself for even more talking therapy. 👍I was hoping someone on here might have experienced my issues but it appears not even though there are thousands of subscribers. Its hard to feel like the odd one out. Why did all these things happen to me.?

Right Susie, get your feeling sorry for yourself head off and start being positive NOW!!

Thanks again for your kind words

Susie

[Deejay62 in reply to Sljp0000]

You’re on here like you said, hoping someone else might of experienced the same problem. There’s still time. Yesterday I think there was a problem with the site, so hopefully as the days go by you will hear from someone, if not then you can call yourself special. You can rant on here as much as you like. Talking therapy is good and talking on here is just as good.

[Adhtz21]

Hi Sljp0000,

to the best of my knowledge my phrenic nerve was not damaged . My operation (2 in 1) was around 7hours These surgeons do the ops daily. I checked the hospital page and looked at the surgeons stats. Some were published and some not As the locum I initially had left the hospital, I requested the one with the best stats and high number of operations performed .

Should you need any more information just come back to me

All the best, Andy

Andy

[bridgeit]

Hi Susie, what a rotten position to find yourself in. Never apologize for a ramble; I do it all the time, like right now!

It must seem as though everything's going wrong at the moment and that very little is positive for you. It's not surprising that you're anxious and stressed. That won't help to ease breathing and indeed might be responsible for random pains - which does not mean that they shouldn't be checked out.

I've replied to your post because I think replies might be a bit thin owing to your situation being highly unusual. I cannot offer anything from direct experience or expertise, being neither affected personally by a phrenic nerve injury nor medically trained.

What I thought I'd do is throw in a couple of thoughts for you to ponder over. You can decide whether or not my offerings might be of some value to you or utterly useless. Here goes:

First, I did find a study online suggesting that exercise and weight loss (if that's applicable) helped someone with a phrenic nerve injury (car accident) resulting in loss of diaphragm function. It's fairly technical as an article. I think the exercise to which they refer is treadmill/aerobic and the patient did this under supervision for 6 months. It seemed to help restore good lung function despite the nerve injury, if I'm reading the outcome correctly. Here's the reference:

sciencedirect.com/science/a...

I wondered if an aerobic exercise regime (treadmill) might be something you can try as you are already trying to walk 3 miles per day? It sounds as though you're on the right track with what you're attempting to do. Unfortunately, the article does not say how long the actual treadmill routine lasted for, though the warm-up/cool-down was 5 minutes apiece. A physiotherapist is best placed to advise about that I think, preferably one that deals with diaphragm disorders.

Second, I think it might help you to know precisely how damaged your phrenic nerve is if you do not already know, i.e. is it traumatized/gone into palsy or has it been completely severed? If it's partially damaged or shocked (bruised), is there a chance of at least some recovery with the aid of the exercise regime, a vitamin B complex supplement, possibly supervised use of a TENS machine, targeted breathing exercises such as those for patients with bronchiectasis, and patience/time? Again, these are questions to ask specialists. I have learned that damaged/bruised nerve tissue can take years to heal.

Third, to reduce stress, I can think of nothing better than meditation, but you're in such a hard place this would I think need to be guided on a one-to-one basis to get you started. I wonder if your GP might direct you to a good therapist who practises mindfulness?

I do know what it's like to be in a situation where there is unlikely to be a "fix" to get back to nominal health. I think perhaps what's needed instead is a coping strategy that enables us to manage an (adversely) changing situation in the best frame of mind possible so that we can make sensible and informed decisions that give us the best quality of life that we can achieve when dealing with many health issues.

I do hope that last sentence makes sense! I know what I mean to convey, but it's difficult to articulate.

Finally, I wish you well and hope that you are able to get some solid answers that help you find a way through the muddle so that you can de-stress, develop your own coping strategy and thus make the best decision for you at the right time.

[Sljp0000 in reply to bridgeit]

Hi Bridge it!

Thank you for taking the time to send me such a long and considerate reply. You're right of course, not many other replies. Some people seem to get loads on here even when responders don't have much to say. I guess I'm not one of the 'in' crowd!

But you replied, thank you again!

I've read the article you sent with interest. I have no way of knowing if my Phrenic nerve is completely severed or damaged until I'm opened up unfortunately. All I know is my diaphragm is only moving by 1cm at the moment but that could be the effect of my right sided diaphragm moving up amd down harder trying to compensate for the left side.

I am actually doing aerobic excercise for my Cardio Rehab. I can't push too far and have been told to keep my heart rate below 114. That's ridiculous, it regularly goes to 135 to get any form of pushing myself. I've told my rehab team.

I'm getting random pains so they want to know whether it's the lung or heart causing the issues. I'm having a bike test and unfortunately another Angiogram soon to make sure my stents aren't starting with Restenosis.

It's interesting to read in tje article that excercise can improve Phrenic nerve function. My surgeon told me it's unlikely it will improve now 7 months since surgery. But then I haven't been exercising for all that time due to other problems. Maybe I will email him.

I have arranged more talking therapy for my mental health. I try and do mindfulness (hubby is a great advocate of that!) but I'm very good and letting my mind wandering to negatives.

I really appreciate all you said in your reply. Thank you again.

Susie x