paralyzed diaphragm

Hey Ross,

Great to hear from you hope your breathing better from that procedure. It will be a year March 15 sounds like it is taking get news. Its has been terrible here couldnt sleep completely sleeped deprived. Had many test ran couldnt figure it out, finally about 6weeks ago my GP Doctor notice my lower left lung partially collapsed an diaphram up. Sent me to Pulminary Doctor did sniff test an confirmed what my Gp thought paralyzed Phrenic Nerve. Doctor sent me home an said live with it. I am 59 years old ready to retire an want to enjoy a few good years, if I am a candidate for this surgery I am in. Would like to talk further with you on this. Thanks Nick

Hey Ross,
Been busy today, called Dr Kaufmans office spoke to Barbara. She said forward all my test to there office for a review, an said I do sound like a candidate for this procedure. I am very excited if this could happen. Would like to know more about procedure an possible problems from it. In my reading this Dr is at the cutting edge of this problem. Will keep you up dated. Thanks Nick TO GOOD BREATHING BOY WE ALL TAKE THAT FOR GRANTED

Hi Nick! I'm so glad to hear that you have started to at least find out if you can obtain a better quality of life. Let me tell you a little more about where I was and where I am now! 1 year ago I could not run 50 ft. I could not even bend over to tie my shoes with out gasping for breath. I used a cpap to breath at night and could not lay flat on my back. It was also tough to eat because over time my diaphragm ended up in my chest cavity with my heart. Needless to say all my other organs were compromised too! I never slept more than 2 hrs at a time.

On jan 27, of this year, My diaphragm began to spasm. I was not sure what was going on. I was have a lot of mid level pain. I called Dr. Kaufman and he was ecstatic. That meant for the 1st time is 6 years my diaphragm was attempting to move. I have been impatient over this waiting period and was beginning to think nothing would ever happen.

I joined a gym the next day and began what I was putting off out of fear that nothing might happen. I was afraid of trying to get on a tread mill in front of people who did not know me or have any idea of what I had been through. My 1st day on the tread mill I was able to do 30 minutes in 10 minute intervals with some light weight lifting in between. To make this short and stop you from falling asleep I have already worked my way up to 40 minutes per workout, all at once. I average 4 miles per hour during the work out and have burst of up to 10 mph and keep it for 1 minute. Tonight I ran at 5.5 mph for 2 minutes. Keep in mind this is a constant changing of speed and elevation. And on top of it I burn off 350 calories. I have lost 9 lbs in the 1st 12 workouts.

You asked about the surgery so let me tell you a little more about that. I had a nerve removed from that back of my right leg and transplanted from the phrenic nerve to my diaphragm. That is the preferred method. The intercostal nerve is also a 2 nd and viable choice to fire a charge to the diaphragm. My surgery was performed at St Peters University Hospital on the campus of Rutgers University I had to stay for 3 days because my procedure was a little more complex than what was expected. Before you get to that though he will want you to see Dr Cole for nerve testing. Very nice man. he is the one who will send the report to Dr Kaufman based on the electrical activity as he maps out all your nerves. Lots of little jolts but he is very gentle.

I'm not sure what part of the country you are from but priceline and hot wire saved me a bundle on my 2 trips to New Jersey. That was on everything flight, hotels etc. Enterprise of site if you have to rent a car. They get $85 per day & up at the airport I believe I paid $40 for a full sized impala.

Well Nick do not be afraid to ask anything else. I'm happy some good has come out of my 6 years of suffering and i know of others that have had the procedure sine reading some of my posts. Let me know how things progress - Ross

Hey Ross,
Thanks for responding,I have few more questions. How much did insurance pick up, and what kind of procedure was it did they have to open your chest or small incision dont no process , please explain. I have already done the sniff test an the one with the electrical current to see the response of nerve. This procedure you did is not know by most doctors in the field the way i see it. My doctor sent me home and said live with it.Sent a note to my work and said he has slight breathing problems, are you kidding me think about fighting fire with this problem. i was putting my gear on rig hoping I didnt get a bad fire. Lucky I am in a higher position were I would only have to go in fire building if thing really got bad and that happened a few times. I am on lay up now an probally wont go back to work, I was planning on retiring in Nov this year any way. 33 years fighting fires in a big city is enough. I thought maybe it was fighting fires on job, my first 7 years on job we did not wear a air mask, i no that sound crazy but just how it was done. I had 3 fires my first day on job, thought maybe that was my problem. I am very excited about this new procedure will jump on plane tomorrow if I qualify. Thanks Again will keep you posted. Nick

Nick. This is one to talk to your insurance company about. Dr Kaufman had to call mine and talk with them. They sent a letter telling me that I was approved for the surgery after talking with him. After 3 months they basically abandoned me. I am currently in litigation and cant talk about it. However the same company paid another persons total bill and we are fighting them based on that and the fact they sent me a letter of approval. The approval arrived the day before the surgery so I had no time to think about it. I just flew to Jersey and had the surgery the next morning. They had to do a partial rib removal to perform the surgery. There is an incision on the side of the paralyzed diaphragm and one on the neck if they are able to connect to the phrenic nerve. The nerve so then passed down to the diaphragm with a wand similar to that used for lypo suction. Then the nerve is attached and the original is clipped. Then the waiting game begins. it takes up to 14 months for the nerve to grow back so it is a waiting game that seems to last forever. - Hope I answerd everything.

Hey Ross,
Few more questions what was your final total bill. How old are you. Do you no how many of these procedures have been done to date. How about the success rate any fatalities or paralsis from surgery. These are question I will ask doctor. If I read it right a week after surgery you were able to sleep laying down an tie your shoe in only a week? Do you have any pain where they took out the nerve from leg? What did you feel like after surgery an for how long did any thing bother you if any. Sorry for all these question just want to make right decision here. Do you happen to know any one else that did this surgery would love to have there comments. Thanks Nick

Hi Nick.

The total bill was about $180,000. I just turned 58 years old. Some numbness in the right calf and heal. not sure on the number of procedures done. I was case #13. I know that he must be doing a study as I have received a couple of follow up questioners from his office. You are correct I was able to do those things you mentioned after one week. That alone was worth the price of admission. The time off after surgery I pushed to go back after 30 days. I was wrong there but work accommodated me the best they could. Yes I do know someone that had the surgery in Sept or Oct. It is to early to tell how things will turn out for him. Different circumstances led to his problems. There are some others that I have not had any luck. I will see if I can get anyone to post.

I don't know if I mentioned it earlier but I am currently working out 7 days a week with no problems. Have gone as long as one hour on the treadmill but usually 40 minutes 4 x week and 15 minutes 3x week with weight lifting. Considering I have not been able to exercise for the past 6 years I'm pretty happy. Average speed in 4 mph distance 2.3 -2.5 miles, 7mph for 2min. My next goal is 2.5 minutes.

Well that's it for tonight. Hope this was helpful.

This is my first update in awhile so I hope it offers enough for those sitting on the fence post some encouragement and those new to this site a ray of hope! I’ll do a quick review so it is not necessary or go back and read all the different replies and questions.

Back in 2005 I had a subclavian bypass to correct a blood flow issue to my right arm. During this procedure my phrenic nerve was severed leaving me with a paralyzed diaphragm. After reading sights like this and seeing how many people had written looking for help I stumbled across Dr Matthew Kaufman. I called with some skepticism, but felt, due to the complications I had developed over the 5 years since that fateful day, that maybe it was time to take a leap of faith.

February of 2010 I flew from Michigan to New Jersey to meet with Dr Kaufman. This came about after Dr Kaufman himself called me to discuss a meeting. This of course was after reviewing my medical records. After a meeting in his office he sent me for nerve testing to see if the procedure was indeed viable. I met with Dr Cole of the Kessler Institute for Rehabilitation.
Dr Cole felt that my nerve had not died off completely and was going to send a favorable report to Dr Kaufman. 30 Days later on March 5th 2010 I had the nerve transplant performed at St Peters University Hospital. Now the rest of the story begins.

I’m not going to go into all the details again but come up to speed. 5 weeks ago I had some spasms in my diaphragm. This was the 1st real sign of my diaphragm responding to the transplant. I knew when I had the surgery that it was a waiting game. 10-14 months were the estimate for the nerve to grow back. I was getting shocks at both ends of the surgery. Small electrical shocks. I had had some early in the recovery because that is what happens when the nerve starts to “wake up again” At this point I joined a gym and started to push myself. I wanted to find out if this was everything I have waited patiently for. To jump back in time I had digressed to the point of 50 ft and I was all done! Out of breath! Winded!

Its been 5 weeks now and I have lost 20 lbs. and have completed four 5k’s to date on the tread mill and will be running in my 1st real 5k April 2nd in Sacramento CA. My goal is to be 35-38 minutes. Now this will not get me an invite to the Olympics but I would hope it would offer encouragement to
those who have felt that there is no hope! I encourage anyone that reads this to take that 1st step and find out if you can be helped. My quality of life, though not what it was before my misfortune, is so much better that it was!

Now for the last and most exciting news! I went to the hospital today and had a sniff test. I was able to see my Diaphragm move! Yes move! The 1st thing out of the Dr’s mouth after convincing him I need to have this procedure was “Damn! It moved” The Dr that did the sniff test had pronounced my diaphragm dead in July of 2007. The 1st words out of his mouth were. Why are we doing this test again? A paralyzed diaphragm doesn’t get better! It was the 1st time in his career or for that fact the radiology staff had seen this happen. Now I must clarify my diaphragm did not have the movement of my left one so I’m not out of the woods yet but considering it lay dormant for 6 years I’m excited about movement of any type. Will it continue to improve? I don’t know but I want to believe it will! Since this is new territory for me and the severity of my condition when I found Dr Kaufman I can’t say he’ll know either. I also had a Pulmonary Function test today. Mixed results but some improvement in all areas. My blood oxygen is also 100%. That was big! Also the reason I’ve tossed my c-pap

If this has intrigued anyone, PLEASE do not hesitate to write me. I hope I can update this again in the near future with more good news! Ross


:-D

To Ross or anyone else who had phrenic nerve decompression surgery with Dr. Kaufman:

Please advise me of your outcomes.  I was diagnosed in 7/09 via sniff test (and cat scan) with right side diaphragmatic paralysis.  It was post viral, post cervical epidural and post chiropractic manipulation, so cause could be any of these.  After about a year and a half, it seemed to be getting better, to where I was able to jog moderately.  In the past few months, however, it has gotten worse again, so that I am short of breath when lying on my back or bending down to tie shoes, etc.   Have you had ups and downs like this?  Also, I have spoken to two highly-credentialed surgeons at Northwestern (one a thoracic surgeon the other a neourosurgeon), both of whom discouraged me when I showed them the material about Kaufman.  The latter said "it's very hard even to find the phrenic nerve -- where does he do this de-compression?"  With my frustration level high and depression beginning to set in due to my regression (no waterskiing with my kids, since the water pressure makes me feel panic-level sob in water), I am reconsidering asking Kaufman to take me on, despite the warnings of these very knowledgable doctors.  Would love some reports on post Kaufman results.

Steve

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Hey Steve,           I truly cannot beleive you just posted this. Today is a great day for you there is hope. I am sitting at home recuperating from my surgery May 20 from Dr Kaufman. I to was sent home an said live with it. Let see where do I start, been having trouble breathing for well over 2 years now. It took my Doctor that long to figure out what was wrong, couldnt do any simple exertion couldnt figure out. Finally diagnosed with left phrenic nerve palsy go home and live with it. Looked every where, only solution was brought up was a plication didnt even know if I needed that. Then every thing change the day I stumble on this site, go back an read my post. Started talking to Ross about his procedure sounded interesting but had many doughts and questions. Talk to my Doctor an told him what I was planning on doing, he look up Dr Kaufman and said he said there was not much written on the subject an the Doctor an told me he felt i should not proceed. I respect my GP opinion, but was following Ross's progress I still felt some hope. I called Dr Kaufman office and had many questions, one was why hasnt there been any documentation on his work, she says it was just posted in the CHEST JOURNAL of medicine on Feb 24 2011. "Really" So I looked it up and it was his first 12 patients an all the results. Wow couldnt wait to copy an send to my Doctor which I did. He calls me back and said these guys are top shelf Doctors and he gave me his blessing. Ok been 11 days since surgery when I woke up out of surgery felt like someone took a weight off chest, had much scar tissue on nerve that was putting pressure on it, cut that away an did a nerve transfer from my serial nerve which hopefully will kick in in about year. Before surgery could not finish a sentence without a breath. Have long way to go but there is hope. Nick

Steve, I see Nick found you already. Well let me tell you there are many people out there that suffer needlessly because of the lack of knowledge about what can be done. I was not a runner but have been trying to become one the last 6 weeks. started running 5k's and I m making progress. 14 months ago I could run 50 feet at best! Last week I did  6.5 miles on a Woodway trainer. ( a modified treadmill for running-softer surface). Now I'm not setting any speed records but I'm getting better times each time. started at 49:58 minutes down to 36:23 Now remember 14months ago 50 feet now 3.1 miles.

To Nick and Ross:  Thank you both for taking the time to respond.  What's making it a tough call for me is that, as depressing as it is, it's still a quality of life issue.  My actual pullmonary function is still relatively high -- on paper, in terms of the chemistry.  The thoracic surgeon said my numbers are even better than where he would hope to GET a patient undergoing plication.  Again ... he's not the one who's short of breath when tying shoes or feeling like he's going to die when he jumps into deep water.  Anyway, not to keep going over the same ground, I think my next step is to approach Dr. Kaufman with some of the more troubling questions.  Like, where does he start cutting to find scar tissue to remove when he's trying to decompress the phrenic nerve?  Does he just cut all along the path of the nerve?  Is there a risk I will be worse than before the surgery?  Things like that.  Thank you both again for your sincerity and helpfulness.

Steve

Im happy i found this site i have had a paralized diaphragm for awhile now. It has become very frustrating my pulmonologist keeps telling me to wait maybe it will come back on its own. My neurologist tells me i need to have the pacemaker that if the phrenic nerve hasnt repaired itself by now its not gonna come back. Im 40 yrs old and a very active person this has been very hard for me to handle i can only breathe laying on the affected side. If you have ever been to southern Alabama you know it gets very hot and humid and makes it even harder to breathe. I also get severe pain in the side of my neck that goes from my ear to my shoulder. These pains in my neck can be so severe i have to keep my head turned to the side to ease the pain a little. I just get tired of being told to keep waiting when i know there are procedures that can help any advice would be greatly appriciated.    

Quote: diagnosed with a paralized diaphragm and phrenic nerve. Do any of you have pleuric type pain in the right side of your neck from your ear to shoulder that hurts like pleurisy? When this pain starts on me, it is hard for me to take a deep breath without severe pain. I have had severe back and neck injuries in the past from car accidents where my car was high from behind at a high rate of speed. Any help or advise would be helpful. 

Thanks.I have pain in the right side of my neck also the pain can be very severe at times to where i have to keep my head turned to help with the pain.

Diana & Bamaboy,