I don't know if I fully understand your post, the dates, etc.

But I do encourage you either to do into the same doctor if you still trust his expertise, or, find a new pain mgt. doctor to find out what exactly is going on.

God bless.

I am going to NJ for the same surgery that you had. I would be interested in anything you could tell me about your experience. I particularly would like to know if I will be up to flying back home one week after the surgery. How do I find your email address? I didn't see it anywhere on this website. Thanks. BJ

Casey,
I'll send fredebassett a PM for you with a link back to this thread.

You always have the best pictures Di.

Linda,
I have been there and you are getting the standard answer from DR's that do not have any idea how to help you. There is a new proceedure! I was case #13 (lucky me) The dr's took the nerve from right right leg and transplanted it fron the phrenic nerve in my neck to my diaphragm. In a nustshell I can lie flat on my back. I no longer breath with the aid of a c-pap, I can bend over tie myshoes w/o thinking I might pass out from a lack of air. The recovery peroid is quite lengthy in term of a recovery (12-14 months) but I was able to go back to work in 30 days, but would recomend wating 8-10 weeks if possible. Let me know if you are still in need of more info -Ross

Sorry I missed this I was giving up hope that anyone was reading my replys. Good luck hope to hear from you soon. I was not allowed to give an email address becasue they say I have not have enough posts. I did fly back after 1 week and went back to work after 30 days but I don't recomed that short of peroid if you can get longer. I am doing pretty good but the next 7 months will tell the story. I did get immediate relief from a lot of symptoms. I no longer sleep with a c-pap. I can lie flat on my back, bend over to tie my shoes etc. Please post how this works out for you. I am curious who is doing you surgery as I believe there are only 2 teams that possibley do this and they are from the same practice. I will check back on this sight. Thanks Ross
(its late so excuse any spelling or gramar)

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!

____________________________________________



Hello Ross,

The info you provided is really appreciated. I am also interested in the surgery you had done - for phrenic nerve damage during heart surgery. I am hoping that I can get your email address so I can contact you further. Here’s hoping Jo*mar will read this post and send you a PM as she did with Casey14. In the meantime, thank you for all the info you have already provided and I hope you are recovering quickly and completely.

Best,
rcnyc