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breathing problems

Feb 29, 2008 - 8 comments
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breathing problems

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breathing

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paralysis



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I have been diagnosed with Unilateral Diaphragmatic Paralysis / a paralyzed diaphragm.

How can I get my Phrenic nerve tested to see if it even works?

I have seen a pulmanary specialist and he is the person that has made my diagnosis,

Tests done to date are as of 2-28-08 ( Just a guess on the spelling )

1. Breathing tests

2. CT scans

3. Floroscophy

4. Broncostophy

5. X rays

I am not ready to call it a day yet!, I would like to get some advice on my next step to become normal again.

This appears to me that they can not pin point what caused this.

MY STORY,

Snow shoveling 12-22-07, heavy, wet, snow, 2.5 hours of snow shoveling, after all the shoveling, back spasams, pain right side of back, upper and mid, 2 weeks on IBU proffien to survive the days and nights with all the pain and spasams that I was having. I am a runner, 4 days prior to this between my daughters hockey game I ran 1.5 hours of a light jog. That day of the 22 of December, I took a quick run after the snow shoveling for a quick workout, I got to the end of the block and I could not breathe for the first time, I had no idea what was instore after that run, It is not good, I need help!

What is my next step to figure out what my options are?

Feel free to call or email with any suggestions.

me cell 262-470-2400

Any suggestions are welcome.

Terry Lesperance





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by Chelle911, Mar 26, 2008
Terry,
I suffered my paralysis from a surgical mishap. I am very symtomatic with this. I would say your level of symtoms and life changes would determine how far you should go with repair. I am trying for a nerve graft.
I have researched, asked questions, looked at various sites pertaining to the phrenic nerve. The way yours started makes me feel Bracial Plexis type injury. Here is a website that may help you. There is a place you can fill out a question card for Dr Nath. I am not in the medical field at all. I am just another person trying to get my life back.
Best of luck!
Michelle

Avatar_n_tn
by Chelle911, Mar 26, 2008
http://www.drnathbrachialplexus.com
Sorry heres the address.

Avatar_m_tn
by rwford, Mar 04, 2011
Terry,
Its late so I'll make this quick! Have you resolved your breathing problems. If not let me know. I had a nerve transplant 1 year ago today! Lots of good things have happened since. Its a long slow process but my quality of life has steadily improved and I am exercising for the 1st time in 6 years. By that I mean lifting weights and completing some simulated 5k's on a treadmill and will be running in an actual 5k when I go to visit my daughter in California next month.  This story is long and drawn out so I will spare you the details at this time. But me say this When i go to bed tonight I will sleep on my back and breath without the aid of any machines. If you'd like to talk let me know . rwford.



Avatar_m_tn
by duane13, Apr 03, 2011
I suffer from paralysis of the right side of my diaphragm, which is elevated and causing the complete collapse of the bottom lobe of my right lung.  I had thoracic outlet surgery on December 21, 2010, to decompress the subclavian vein in my shoulder, which had clotted because it was being pinched between the first rib and clavicle.  This is called Paget-Von Schroetter's syndrome.  Anyway, the doctors removed my first rib, going in from the top - right at the point where my neck meets my shoulder.

Immediately after the surgery they took a chest X-ray and discovered atelectasis, or the collapse, but they didn't tell me.  The next day (still in hospital - serious surgery, three-day stay) I complained of shortness of breath when the nurse took me off oxygen, so the doc took another X-ray and put me back on O2 - but still did not explain why I was short of breath.  I continued to be short of breath after discharge but I was breathing on my own without oxygen and I thought it was just from the narcotic pain meds and from being suddenly sedentary.  I was so naive.  I got my records of the surgery a few weeks later and discovered the atelectasis, which the surgeon had never told me about, not even during the follow-up 16 days after the surgery!  No wonder that after one follow-up he dumped me back on my primary-care physician, even though he had been managing my Coumadin levels.  The surgeon damaged the phrenic nerve during the procedure (I have yet to see a neurologist for a conduction study to know whether it was just damaged or if it was severed.)  

I had been doing okay, as I said, but because of the persistence of the condition, I was referred to a pulmonologist.  A sniff test confirmed the paralysis, and function tests on 3/1/11 showed a 35% loss in lung function (I have annual PFTs at work so we had a baseline to compare to.) I cannot lay flat on my back, tie my shoes without gasping for air, nor do anything strenuous.  I am normally very active, enjoying bike riding, camping, hiking and backpacking with my sons, but those days are gone for now.  I've already canceled our planned July backpacking trip.  At first I thought I could overcome this with exercise, and I even returned to work on 3/15/11, but that lasted just three days and I haven't gone back.  I started having difficulty breathing, and eventually ended up in the ER with a pulse-ox in the mid 80s, and I ended up on oxygen.  No embolism, no infection, just no lung efficiency.  Paradoxically, efficiency has decreased as time-since-surgery has increased. My pulmonologist was perplexed, so he tried to put me on steroids, which I refused.  I have since improved and I'm off oxygen again.  This is bothersome, and it indicates that I cannot simply overcome this with conditioning, an effort to improve remaining lung function.  There has to be something I can do.

I am searching for a cure.

Avatar_m_tn
by rwford, Apr 19, 2011
Duane. I had a subclavian bypass 6 years ago which led to a lying Dr and pretty much what you have described.I wont boar you with this story as I have posed it on many sites ( Google groups, steady health health boards etc) My diaphragm made it to my chest cavity compromising all my organs and leaving with all your symptoms and more. I searched the internet hoping to get answers for 5 years. One day I stumbled upon a Dr. that has given me back a great deal of my life. I have gone from running 50 ft and being out of breath to running a 5k with my daughter this past week. Tonight I ran 4.25 miles after a 12 hr day at work. Now by running I go anywhere from 4 mph to 6.5mph so the 4.0 is more of a very brisk walk bit the point is I could not do this prior to my surgery. I also repelled 17 stories into a mineshaft. My c-pap is collecting dust as I have not used it in 13 months, The surgery has a 8-14 month recovery period and not everyone will qualify. If you want more info I will be happy to provide it.You are in a good time frame if the nerve can be saved. If not a transplant can still restore the function. (that is what I had.) Let me know if this is of interest. I search every night for people like yourself because I do not want others to go through the needless suffering I did. There are a lot of us out there. Some jsut don;t know yet because they have Dr's that refuse to tell them the truth about there screw ups. Ross

Avatar_m_tn
by duane13, Apr 22, 2011
Thanks, Ross.  I also found Dr. Kaufman by searching around the net.  It seems he and his team are the only ones doing this type of surgery.  I'm assuming that my medical insurance won't cover the procedure, but I'm going to contact Dr. Kaufman's office Monday to get necessary info, then I'll contact my insurance company.  Last week I also (finally) contacted a malpractice lawyer and had a 15-minute phone consultation.  I meet with him Tuesday.  If all else fails, I'll either mortgage or sell my house to get this procedure if that's what it takes, but it's still not certain that my condition is permanent (though it appears to be, as four months have now passed, but spontaneous recovery can happen up to a year after phrenic nerve damage.)

I'll continue to post with updates and hopefully good news.

Duane

Avatar_m_tn
by duane13, May 11, 2011
Hey Ross,

I spoke with Dr. Kaufman yesterday and he thinks he can help me.  Yesterday afternoon, Heather called me with some dates: I fly to Jersey on July 17th, then meet Dr. Cole for nerve testing July 18 & 19. Then I'll see a pulmonologist, meet the thoracic surgeon and Dr. Kaufman, and if all is well I'll have phrenic nerve surgery on July 23rd.  I am very excited!

Duane

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by rwford, May 25, 2011
Duane, Sorry I've been away for awhile getting another person through the process of meeting with Dr Kaufman. Here is a post from the patient "Hey All, There is help out there for phrenic nerve damage. Thanks to Ross an Jerry 2 people that talked to me about Dr Kaufman. I was told by my pulminary Doctor to go home an live with it. I am sitting in hotel room in New Jersey just had surgery May 20 when I woke up after surgery it was like someone took a brick off my chest. Had some decompression from old injury done to nerve and a graft done from my serial nerve in leg. Just from decompression feel great relief. Hope to fly home tomorrow an looking forward to a better quality of life. Any one out there with phrenic nerve injuries there is hope. Nick"

I hope this gives you some much deserved encouragement - Ross

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