Hi,
I presently have a nonfunctioning Left Diaphram due to a lack of transmission thru the Phrenic Nerve. This happened at the same time I had a window cut in my Pericardiam that surrounds the heart. I believe that my Phrenic Nerve was cut in half or cut enough to stop its functioning. I have had multiple EMG's done on my left Phrenic Nerve that shows no transmission or continuity in that nerve. It has been 14 months since this procedure was done and if it was an inflamation of the nerve it would have subsided with all the Steriods and anti inflamatories I have been on... Has your diaphram started functioning again? I need to find out if there is any way that the medical community can find out for sure whether the Phrenic Nerve was cut or just tramautized beyond belief? I have been told that if functioning hasn't returned with in a year you can pretty much forget about that Diaphram ever functioning again? And before I go under the knife again to have a Placation done I want to make sure that I have exhausted any chance of that nerve functioning again. In case you don't know a Placation is not reversible they sew the diaphram in its lowest position so your Lung can expand the most because over a period of time the Diaphram naturally starts rising.
David G

Hi,
I believe what you meant was that you had a "sniff test". I also am presently suffering from Phrenic Nerve Damage. It has been over a year since surgery in that area and I believe the surgeon cut it in half or enough to stop its functioning. Has your Phrenic nerve function returned yet?
David G

Yes, it was a "sniff test".

My loss of left diaphrahm function is still as random as stated above. With everything else I have it is a relatively minor annoyance. But it will be keeping me from getting right side surgery until it stabilizes.

I'm 6 months post-op and generally healing very slowly. But there is progress every month and the healing appears to be speeding up now. I cannot objectively say if it is better, I do appear to be able to handle talking for longer periods of time than I could 3 months ago.

Just a quickie --- I wondered how everyone with phrenic nerve issues are doing. I am still short of breath, on the old oxygen still.:grouphug:

I'm still having random episodes daily. Thankfully not to the point of needing oxygen. I'm wondering how much of it is just being out of shape from not even being able to walk more than 100yds at the most for the past 7 months without triggering C5 irritation in my left shoulder.

I've been doing my diaphragmatic breathing exercises and trying to correct my long-learned shallow breathing habit.

I live on a hillside so we've got lots of stairs in and around the house. Having a newborn to carry around and a 23mo to pick up doesn't seem to increase episodes too much. Sometimes the shortness of breath attacks are latent to activity by 5-10 minutes or more.

It doesn't help that its been smoky from the wildfires here and the air has been unhealthy for probably 20 of the last 24 days. So we've all been cooped up in the house with the central air circulating fan 24/7 and the portable HEPA air cleaner running on high. We've always had electrostatic filters in the HVAC as well as UV-C germicidal lights I installed near the A/C coil a few years ago.

BTW, the combination of electrostatic air filters(to replace the disposable ones), the UVC lights, running the fan as much as you can afford, and a Central Vacuum system(because it exhausts outside) is the perfect prescription to minimize having to dust your house more than 3-4 times a year. I'm not kidding. We may be down to 2-3x if I ever get around to justifying buying the barrier mattress/box spring covers.

The filters were about $50-60 each. (we needed 2 as we have 2 returns)
The UVC system was about $140 for a system that could handle a 3-5 ton system. It genetically alters the makeup of molds, viruses, etc so they can't reproduce. They recommend replacing the bulbs every year and that runs $50-60.

I installed the Central Vac myself with a mix/match system bought online from a few different sources for ~$600-700. We could have gotten by for about half of that but we got a top notch system. I spent about another $30 getting pipe lengths from a local supplier.

All the mattress/pillow stuff is going to run about $300-400 and I just can't justify that right now. My sinus/allergy issues haven't been too bad, but it looks like both kids will have chronic issues so would really like to head that off as much as possible.

We haven't been vacuuming as much as we should and the resultant dust mite buildup is quite noticable.

Hi, I realise that some of the posts are quite old, but all are relevant to my situation
Following a sternotomy to remove a tumour in my chest cavity in Feb 09, I suffered Phrenic nerve damage and a paralysed raised left diaphragm.
I suffer from breathing difficulties, have the feeling of a brick in chest, have the sensation of something blocking my throat, cant lie flat, constant pain and still taking pain relief etc all things that have been discussed by you guys.
One year on and Im told my diaphragm is 98% back in its position. But I am still suffering from all the same post op symptoms, my consultant and his team can offer me no explanation and say they dont know why I am continuing to have problems. Needless to say I was upset by their attitude and then I found your comments, Thankyou, Im not mad other people have or are experiencing similar things. I feel better for knowing I am not alone.
I dont know where to turn next as the medical team say there is no more they can do, except control the pain.
Any one had there situation resolved.
Thanks

Sorry to hear about you plight. I have been reading these stories on and off for the past 5 years. I had my diaphragm paralyzed after having surgery to correct a blood flow problem to my right arm (subclavian bypass) I tried everything exercise, medication etc. I went to the Mayo Clinic and we talked about diaphragm plication surgery last year. A family crisis caused me to leave during testing and return home. During that year I found a group of surgeons that do nerve reconstruction. They removed 35 cm of nerve from my right leg and transplanted it attaching one end to my phrenic nerve and the other to my diaphragm. The jury is still out as the nerve regenerates at approximately 1 mm per day. This means if I have a full recovery I will not no for 8 -14 months. What i can tell you is that I can now lay on my back again. I can bend over and tie my shoes w/o gasping for breath. I no longer have the feeling like I was forced to eat until the point of feeling sick even though I may have not eaten for more than 24 hrs at times. My case was extreme. My diaphragm was elevated into my chest cavity (same place that occupies your heart) If nothing else happens the changes that did have already made a difference in the way I feel. I know of no one else that performs this surgery as it took me 5 years of searching to find them. Can they help everyone! NO! They are selective on who they take after a battery of tests. If you are interested in this please feel free to email me or post a note to this sight.

David,
My diaphragm ended up in my chect cavity and I was msierable to say the least. I had a nerve transplant to reconect the phrenic nerve to the diaphragm. Is this going to be a success? To early to tell. The surgery has changed my life that I can now lay flat on my back and breath. I can tie my shoes w/o gasping for breath and I no longer feel like I was force fed to the point of being sick. So yes I feel like there was a victory even if nothing else happens. The time frame is 8-14 months to know if the nerve does its job becase it has to regrow. This happens at the rete of a mm / day. I was not a candidate for plication due to the severity of my condition. the Drs sent me to the Kessler institute for rehab in NJ for testing before they woould even talk to me. They want success so if they don't feel your a candidate they wont do a needless operation. The world is watching and they have plans to teach this technique in the future. If this is of interest I can give you more information. Ross

looking at where the phrenic nerve attaches, i think that one hurts me too. not to the same extent tho.

Please help....I had TOS surgery last year and am now 10 months post surgery. I suffered damage to my phrenic nerve, long thoracic nerve and intercostal nerves during the surgery. I had a "sniff test" and EMG that confirmed the nerve damage (incomplete long thoracic nerve pattern and no response from the phrenic nerve).

My scapula completely collapsed following the surgery and was winging (worse case my doctors and PT had ever seen). I felt like my chest was being crushed from the intercostal nerve damage. I also spent several months post surgery on oxygen (my O2 was only 78% at one point) but am now off it, as my chest muscles have kicked in to help me breathe. I still have extreme shortness of breathe with any kind of exertion (walking up stairs makes me wheeze so bad and my heart rate goes through the roof). I can no longer lead an active, normal life.

I have consulted with a leading clinic in the US and they said that I have to wait 2 yrs to see if the phrenic nerve will come back. I am devastated, I feel like an old woman and am only young!. 10 months post surgery and no signs of recovery with the phrenic nerve, although the long thoracic nerve has shown signs of repair and my scapula is winging less than initially.

I have several questions I would like help with, if anyone can answer them.

My doctors tell me that as the long thoracic nerve has shown signs of repair (less winging), but that it doesn't look good for the phrenic nerve as there is no evidence to suggest that it is coming back. However, they still agree I have to wait up to 2 yrs until I will know if the phrenic nerve was cut during surgery. They have referred me for cardio-pulmonary therapy for 6 months while I wait. I read that after one year post surgery if there is no response from the phrenic nerve, then the chances of it coming back are slim.

1) Does anyone know what the chances of the phrenic nerve coming back are after one year? I don't want to wait another year from now if I can maybe go to the Mayo Clinic and see if they could help me, if the chances are slim that it will come back after a year. Are there any papers or statistics on the length of recovery time for the phrenic nerve post TOS surgery?

2) Does anyone have any experience with the Mayo Clinic and nerve grafting surgery? Or experience with diaphragm plication?

3) My ob/gyn has told me that it would be too risky to become pregnant (again devastated about that - I am that age!). Has anyone become pregnant while having a phrenic nerve that is damaged?. Are there any high risk doctors (ob/gyn's) that I may turn too. Obviously getting well is my main priority but I do want a family at some point as well. The clock is ticking for me, this surgery could not have gone wrong at a worse time.

I dread waking up every morning to face another day of pain, inability to lead my life as I should be able to and constant doctors and PT appointments.

Any help would be greatly appreciated.

Thank you.