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Hello Casey,

I just found this website today and I am also interested in the surgery that you are having performed - for phrenic nerve damage during heart surgery. And, as I read that your surgery was scheduled to take place on September 3rd, I imagine you are just beginning your recovery. I do hope your surgery went just as you hoped it would and I’d like to wish you a healthy and even comfortable recovery right from the start. When you are feeling somewhat better, I’d surely like to know how your surgery went and how you are doing.

I am interested as Ross is in knowing if you had a Nerve Transplant or other type of surgery - and who did your surgery. I am hoping that I can get your email address so I can contact you further - but, of course, I won’t contact you ‘til you’re stronger – for now it’s, all and only, about your healthy recovery. I will look for your posts here and then I would like to contact you by email when you are feeling well enough for communication. Here’s hoping Jo*mar will read this post and send you a PM.

My thoughts are with you for a healthy, quick and complete recovery.

Best,
rcnyc

Hi,
I am looking for some resources or some advice. My sister in law who is 34 and has 5 children raging in ages from 16 all the way down to 2 had a shoulder injury about 4 years ago. And 2 years ago she underwent surgery to repair some of the damage. while in surgery, the surgeon severed her phrenic nerve. since then she has to be on oxygen 24/7, not only that she also went and had a fairly new procedure done to her called the hemidiaphremic pacser it is a machine that has wires sticking out of your body and it is supposed to help the diaphragm move. well it isn't working. so i have been doing some research on nerve transplant..Has anyone here had the procedure done and if so how are you now? My sister in law is always sick and this is no way to live life especially as young as she is any advice would be wonderful
Thanks have a great day and God Bless

Oh how terrible!

I'll make a copy of you post katielynn88 and place it on our New members forum - maybe someone there will have some info also.

http://neurotalk.psychcentral.com/forum88.html

Hello.
Sorry I have been away from the site lately. I strongly suggest that your sister talk with Dr Kaufmans office and see if they can offer some help. I had a nerve transplant and you may have seen some of my posts on here in the past. Several others I see have been to Dr Kaufman too and I hope you are doing well. I'm coming up on my 6 month anniversary since my surgery. The jury is still out but since my last post I did run 1/4 of a mile. Considering that I could only run about 50 ft prior to my surgery i only look for good things to come. You can find him on the web at the advanced reconstruction surgery website. Good luck and If you have any questions please post. There are many of us out there with some form of this problem and there is help for many if we can only find the right person to help.

I'm continuing to find more and more of us out there. I'm glad you found us. The Dr. that did my surgery is Kaufman and he is located in NJ. You can find him under advanced reconstuction surgery. His assistant, Heather is very helpful and would probably be the 1st one you talk to. The Dr. actually took the time to call me and see if he felt I was a candidate. He wants success on these surgeries and is careful to select those he can help and not hurt. If I keep talking him up he might never be able to take a vacation. If you need a way to contact or can't find him let me know. It has changed my life and I look forward to it getting even better.


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[/QUOTE]

Katielynn,
I don't know if you have seen any of my posts but I do feel for your sister in law. I started 5 years ago looking for help and have crossed paths with many people that have problems with the phrenic nerve nad diaphragm. I had the nerve transplant surgery in March or this year and although I've made some great strides I am still waiting for the nerve to make its connection. This is a 10 -14 month process as the regrowth is very slow and as I've said to many of my friends it sucks to be 6'2'' tall when your waiting on a process like this.

The surgery has changed my life for the good. Although I may never have a complete recovery I can once again do the simple things that many take for granite like lay flat on my back w/o grasping fro air, bend over and tie my own shoes, sleep w/o the aid of a c pap machine walk up multiple flights of stairs w/o stopping for a rest because I'm winded. I played tag with my grand children and surprised the family when I was able to run around the way the remembered.

So don't give up hope! My surgen was Dr Mathew Kaufman and he is located in NJ. He is the only Dr. in my 5 years of searching that was able to help me. Hopefully he can helpher too! You can contact him on the web. They advertise on this site I beleive. They are called advanced reconstructive surgery. He called me and interviewed me over the phone before proceeding to the next step. If he does not believe he can help he will not waste you time.
Good luck - Ross

Hello, just joined the group. I have a paralyzed diaphragm and am on O2. We do not know why it is paralyzed as it came on gradually over a year with fatigue and shortness of breath. I got pneumonia and have been on O2 ever since. My GP couldnt figure it out so went to special pulmonay doc. Did Sniff test and heard everyone in the room go....Ahh-Haa. So I figured the found out what was wrong.....the diaphragm wasnt working.

Seems the Phrenic Nerve is somehow not working One lung looks to have never worked they thought and the other is only about 35% working. May have been born with the issue.

Have some minor scoliosis with front to back bending of spine. Likely the Phrenic Nerve coming through C3-5 is messed up due to that spine bending.

Going to see Dr. Kaufmann and Dr. Cole in NJ in January. Will do complete nerve conduction and velocity study to see if they are viable.

Have been told likely candidate for phrenic nerve pacing.

For those of you that have already been to Dr. Kaufman, could you post some info on the Hotels in the area...which one etc. Ive been talking with the Dr.'s charge nurse and she has given me a couple of hotel names.

Also, I may have some folks fly up (Ill have to drive due to oxygen) - Are there any car services or vans to Hospital from the Newark airport...

Thanks, Ill be watching the thread.

Greetings. So glad you found Dr Kaufamn. He did my surgery in March and I am continuing to improve. Now as for the transportation and hotels. There are some nice hotels around the airport with transportation to and from the airport. If you want the best way to get around it's rent a car. Enterpise will take you to an off sight rental faciltiy that is about 1/2 the price of renting at the airport. I used price line for hotels and I stayed at the Seridan for $50/ night by bidding. If you do this you go to themap on priceline and choose the highest rated hotels.Bid low and they will guide you through the process. They have predetermined prices too. Use these as a guideline and then start bidding about 70% less than the posted online prices. I also stayed at a ery nice hotel right accross the street from the airport for $50 night. If you decide to rent a car a gps is a must in that town. Not sure if this has been helpful but it worked for me. I also did this for my flight and it worked out great too. However you must be prepaired to travel on there terms if you bid on a flight. you can pick you day, airport to depart and arrive at but not the flight.

Hey All,
Just found this site from talking to Ross. My story is have left side phrenic nerve damage for over year. Found out about month ago after many tests an to the point that my doctor said it maybe in my head. " Really" cant breath lying down, why cant I breath when I go tie shoe, my endurance very bad, not good when you are a fireman. They sent me home said live with it. I am 59 am ready to retire but not like this. In my research which only started in last few weeks as any one knows with this condition there is not many alternatives. Live with it or try very new procedures out there. Like what Ross did, or Bricko or Casey who fell off the end of world. Funny didnt hear from him after surgery if he even had it done. Bricko tell us more many people are waiting to hear. i am waiting for call from Dr Kaufaum to see if I qualify. He has only done this surgery 20 times I would say that is cutting edge. My GP thinks I should move a little slower, he dont have this problem. He says there is no documentation out there by this Doctor. Which I agree there should be some thing out by now about this procedure written by him. So confused here, If any other person had this done let talk. Thanks Nick

Hi Nick,
I just wondered if part of the phernic damage is a result of your job. The hoses are so heavy as is most equipment you used. Scar matter could have become an issues as is a stretch injury to the nerves.
The phernic nerve comes through the scalenes in the neck, I know fire guys like to keep fit by lifting weights along with all the work lifting.

This sounds like something work related. I would find someone able to recreate the symptoms to narrow down the cause.
TOS is a group of symptoms not one injury or diagx to cover all, but many individualized complex issues.

The chest wall against the ribs,, especially if you have a narrow opening between the first rib and collar bone, if there is muscle build up of the neck, a fall or injury to stretch the arm, much like zingers from football when the arm is caught and pulled back.

The inability to get a good breath also may be from the years of smoke and fumes. They damage the lungs and then when a contributing factor as the phernic nerve not getting the diaphragm going good can contribute.

Just throwing some other thoughts out there, But I would not accept one label on a complex issue/injury.

Welcome to the site there are many knowledgeable friends here with many different ways they have TOS or phernic nerve damage.
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