Pherenic nerve damage is immediate and very concerning. The symptoms seem to be another or coexisiting symptom too. THe pherneic nerve traveks to either side of the diaphgram and allows to expane and deflate the lungs. I am not sure about irratation, but damaged nerve is when you need Ox to breath from shortness of breath of the innability to inflate the lung. When I had a friend in NJ had surgery her side effect was a deep raspy voice, almost too hard to speak. She had scar matter post op wrap around the area, a clean up redo was done and did aleviate that symptom.

I would wonder about if you had a breathing tube and damage done from the anestisia? This I heard from other surgeries not a TOS surgery developing and it did take months to have the inflamation calm down.
Post op is not weeks, it is months and years. Not like having tonsils out, an arm break repaired, etc. The nerves for some are fine and others hyper signals, even in some spots permanant feel of novacain numbness.

Do a general search on post op anesethsia side effects and see if anything fits.
Sounds like resting does help you. Becareful chewing, chew everything theorughly, what if you did not feel a too large piece, or too large got stuck .
TOS is always a detective work, not a cookie cutter in the world for us,

I knew of one gal from old forum that had a TOS surgery, first time on this side she had a pherenic nerve paralyzed. Then after a redo on the opposite side the second pherenic nerve was paralyzed. She is on oxygen total for life support, has an aid dog, needs a motor chair to get around and every breath is a challange. w/c was trying to cut O2 for her and we had a campaign to pray and send letters to her representatives to help in the life needed treatment. She was a professional singer too. The surgeon, a top of the top considered surgeon.

Keep us updated,
dianne

Some of your symptoms remind me of when I had the pleural effusion (fluid building up in the space between the lung sack and the chest wall). Pain on lying down, unable to take a breath... have you been checked for this? I think an x-ray is all it takes to rule this out.

Perhaps the pherenic nerve is what is being irritated when I have breathing difficulties? Like someone sitting on my chest, dizzy, weak... it very scary!

I hope things will resolve for you soon Linda - but do have the lungs double-checked, OK hun?

Thanks a lot guys for the info!!! I may be off to see a respirologist in the future but will give it some time first.I am so sick of doctors!!! as I am sure all of you are too!!!;-))
One doc thought might be due to the intubation tube due to surgery.Anyway....wow...thanks for the help and advice.
Have a great Easter guys!!!!
Linda

Hi All
Noxy, I had bil ribs done along time ago, but then 2 and half years ago had to have redo/exploratory surgery to left side. To cut long story short I developed shortness of breath and chest pain a few days post surgery (x ray immed post op shows equal diaphragms) it looked at first if having embolism etc ( I had artery stenosis).. Anyway I was found to have elevated l diaphragm and had spell ITU. Had nerve conduction studies and I have Phrenic nerve palsy (complete) on L side and some issues with right side. I get short of breath on minimal exertion and on continuous oxygen which helps as resp rate is quite high. I cannot lie flat as have that someone sitting on chest wall and choking fullness around throat. It is not pleasant at all. I was told that if just down to irritation it can take years to improve or may never. I have problems on r side but no way can I have any surgery attempted now as exceptionally risky. Had pulmonary function tests which are not fab. This is problematic from pain relief as have to be careful that do not cause any respiratory depression.

Sorry if this sounds scary but knowing that you are not alone etc may help.


Dimarie mentiones about chewing food well...I have ocassions when something goes the wrong way, not pleasant at all. Seems to occur if have chest infection (more prone to and cough not great)etc at time.

Take it slow and steady and be careful if have resp infection - I have to have antibiotics on standby.

Take care and rest up from surgery.

Love
Hx


BTW
To everyone best wishes at Easter time - thinking of you all. I am not in good state at moment , pain has has shot up high and wish I could leave both arms and neck somewhere and have a rest from it all. I am doing best to keep laughing (hard work) and try do some things despite the pain. Have pain at rest and pain worse when do anything but try to battle though then pay for it. Need to remember my limitations - not good to start off with. HAd Right SI joint injected recently so at least one thing a bit easier!!

Hey HX...nice to hear from you! It is nice to know it isnt all in my head or I have finally gone crazy!!haha...sorry to hear about your situation though.I too have that crushing feeling...not all the time ...but my diaphragms are equal at this point...rt side lags a bit on the breath but seems to be getting better.I was told any irritation takes months and months to repair as that old phrenic nerve does NOT like to be manipulated at all.
Anyway...I am giving it some more time to see if will get better before going for further tests.
You Take Care of You there chickee baby!
Linda....Ontaio Canada

Hi
You mentioned a friend of yours had a "redo" of a surgery and it took care of the issue. Can you please provide some information on it as I suffer from dyspnea, inablity to yawn, and fatigue. Had neck surgery a few years ago and have asked if it could be from the scar tissue. To wit, I have been told No and am still suffering.
I am grateful for any help as it has gotten unbearable.

Kim

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

Thanks so much for your reply. I have been watching for it every day. Glad to hear that you have had some immediate results and hope that you continue to improve.

Dr. Kaufman is going to do my surgery on the 3rd of September. I got started on overnight oxygen and it has really helped as my oxygen was 77. What was your level of pain during the first week and how long was it until you were reasonably free of pain.....or have you gotten that far yet? What month was your surgery?

Hope you see this post. Please let me know. BJ

Hi Casey. I' m glad I checked in last night. Dr. Kaufman and Cacavelli seem to be quite busy. Are you going to have a Nerve transplant, phrenic ot diaphragm , pacing or plication? Did you meet with Dr Cole for nerve mapping or did they set you up with testing in your home town. I get excited every time I hear someone has found the Dr. I have been writing to a lot of people but some of the posts are so old I'm sure that many people have given up!

To answer your question's about pain. the 1st day my wife said I kept saying the surgery was nothing and if I wasn’t hooked to a chest tube I could get up and do what ever I wanted. Well then they took me off the morphine drip the next day and reality set in. It was not the worst pain I've ever experienced but there was a good deal of pain that hey did a very good job of controlling. They would give me a shot and in 1-2 minutes I would be out for 6-8 hours but sleep does help you heal. Will your surgery be at St Peters University Hospital? Great surgical team and operating room but I’ve been to the Mayo clinic and that’s like a 5 star hotel competing with a 2 star. Don't get me wrong it was a good hospital but if you ever go to a place like Mayo and hopefully if you do it is to visit, there is know comparison.

My surgery ended up being more complicated than expected so i spent and extra day & 1/2 at the hospital. The rest was at the Sheraton Inn. If you have not got a hotel yet price line was great. Do the bid on an arear that is in the area. I pick 3& 4 star and bid low. I always end up under there suggested price. $50 / night at Sheraton you just don't know which hotel your going to get but by doing it by the star rating they have been great.

If you need to rent a car while there Enterprise was the best. They picked me up at the airport ,gave me a free upgrade and took me back to the air port.

I guess I've gotten off the subject. Pain was managed by the hospital and Dr. Kaufman gave me a prescription for vicadin which I do not like but it survey the purpose of pain control and allowed me to sleep. I did have a problem with swelling of my right leg after the nerve was removed. This was controlled by a compression stocking but it took about 3 week after the surgery to go back to normal. I still do have some pain as they removed a partial rib due to the placement of my diaphragm. it is more sensitive at times , but I expect that is dependant on how hard i am pushing myself. I have been working at bulding up some stamina again and periodically run a sled hill in the area with my dog. 5 months ago it would have been a challenge to walk up it. My surgery was march 5th.

Tell Dr. Kaufman that I said Hello. He is going to be wondering how people coming to see him know me (case #13) Good luck I hope to keep contact and follow your recovery.

**
Good luck Ross

Casey,

how did the surgery go??? I am looking into the possibility of having this same surgery done. any help or info from anyone would be most welcome...

Thanks!