Friday, January 1, 2010

Frustrations with my paralyzed diaphragm

After not being able to sleep too well for the past 4 months because of an elevated / paralyzed diaphragm, and lying awake again this morning since 4:30 am, I have finally decided to put some information out there to see if I get some answers. Let me first say that I am not out to damage the practice of anesthesiology. Lord knows, we couldn't / wouldn't want to have certain procedures without being put to sleep, or at least in La-La land. Therefore, I appreciate the profession greatly! I also want to put information out there so people can make an informed decision once they hear what happened to me. So, here is my story.
I started having shoulder problems approx. 11 years ago. When I couldn't get a gallon of milk out of the fridge without holding my arm close to my side I knew something was wrong. I had my first shoulder surgery approx. 10 years ago. It was a Labrym tear. After surgery, therapy and a few months, I was able to throw a football again, shoot basketball, etc. without much pain.
Fast forward to 2009. After more issues with my shoulder for the past year, I was diagnosed with a tear in my Rotator Cuff and bone spurs. I decided to have the surgery again on August 27th of 2009. No biggie...I thought! The one thing that stands out with this surgery is that I was told I would be receiving a "block." This was for the pain for basically the first 24 hours after surgery, then it would wear off. Once again, no big deal...and I must say, it was nice not being able to feel my shoulder those first 24 hours. (Let me add that I didn't have a "block" my first surgery). Between 4-6 days after the surgery I started realizing I was having some breathing issues, especially when I would lay back in the recliner. My chest would get really tight. I went to my local Dr. and they did a chest x-ray and said I had some fluid in my lungs from the surgery (something about when they pulled the tube out some fluid got in my lungs...they had a term for it but I can't remember it.) My Dr. gave me a strong antibiotic and when I got home I took one of the pills. About an hour or two later I took my dog for a walk. Well, my chest got so tight from the time I got back from the 10 minute walk that when I came back in the house I lost it. I started crying, and told my wife Kelly that I thought I was having a heart attack. She called my Dr and I went to see him immediately. They did the tests they could do there and everything came back ok. To be safe, because of my family history and my past cholesterol levels, I was sent to Saint Vincent's here in Birmingham for a battery of heart tests. Once again, everything came back fine. But, I'm still feeling weird in my chest so I have these questions in my head as to what is going on.
Fast forward a week. Still having these breathing issues and constantly keeping my hand on my chest / upper abdomen wanting to push, massage, just anything to try to relieve the pressure. Well, I had been out with some friends and ate dinner, one of the first bigger meals I had had since the surgery. That night as I was trying to sleep on the recliner, I was absolutely miserable. Chest was so tight! Couldn't breathe! I was scared, crying, confessing, getting things right! God and I had one of our many conversations. Now, I am not one to run to the Emergency Room. You have to be somewhat on your deathbed to even want to go there, especially at midnight, knowing the "waiting" that lies ahead, but even though I had been put through the mill the last time I was there, I was so uncomfortable, and my chest was so tight, and I was so scared...that I told Kelly I am going to the Emergency Room. After 2 chest x-rays and another test or two, once again, they determined it was fluid and I needed a spirometer to help me breathe and get that fluid out of my lungs. (I did wonder why I hadn't been given this gadget before all this, but I'm not a Dr, and a pet peeve of mine is when people want to question Dr.'s as if they've been to Medical school themselves. I know at times questions need to be asked, and gut feelings need to be listened to, and Dr.'s aren't perfect, but I guess I get this from my "Pharmacist" dad and his experiences dealing with "certain" people). This is one reason why I want to be so careful as to how I come across writing this blog.
A few days later, after taking all the prescribed medicine, I went for a follow-up appt. with my local Dr and he took another x-ray to see how my lungs looked. Well, after taking the x-rays, blood tests, etc. I thought I was finished so I headed out the door. I almost got to my car when the nurse opened the door and yelled at me and said I needed to get back in the office. I have to admit I was alarmed. When I went back into the office my Dr said "come look at this x-ray." He then said, "I don't know how you are breathing, look at all this fluid, it is even worse than before." (It made me think of the joke my Pastor tells of what was written on a man's tombstone, "I told you I was sick.") I was so frustrated because I seemed to be getting nowhere...did anybody understand how I was feeling? Speaking of feelings...I didn't feel any better when the bills began to roll in... Emergency Room "deductibles", X-rays, tests, etc. and all this because of shoulder surgery? Hmm?
After being told that the fluid had gotten worse, my Dr. recommended that I see a lung specialist at Brookwood Hospital...another deductible. :-( He informed me they would probably stick a needle in my back and into my lung and drain the fluid out of my lungs...JOY! But, I was ready when he told me I would feel almost immediate relief. I just wanted to be able to breathe, to walk up a flight of steps without having to stop and get my breath, to wrestle with my boys without having to stop and catch my breath, to enjoy a meal without dreading how I'd feel afterward. Most of all, to SING, LEAD WORSHIP! You know...what I do for a living... without struggling. To be able to hold a note for more than 4 beats! I was ready for that needle...bring it on! (Ok, I did lie awake wondering what in the world this was going to feel like...especially after hearing everybody's personal experiences.) Isn't it funny how people feel like they are encouraging you when they tell you their "horror story."
After waiting a few days to get in to see the lung specialist and thinking this was the day I would know if this procedure is "no big deal" or the " worst thing I've ever had done" , the Dr. looks at me after looking at the x-ray and say's, "before we go sticking needles in you, I want to make sure it is fluid." Of course my first thought is what else could it be? My mind went everywhere until he said, "it could be an elevated or paralyzed diaphragm." What is that? I had never heard of that. How did this happen?
Of course, he wanted to do his own tests (more $$) and I understand since I was his patient now, but we go again. To shorten this part, after more tests, he diagnosed me with an Elevated / Paralyzed diaphragm. For me, the reality was when I was standing in front of this x-ray machine and the Dr. said turn around here and breathe in and look at this screen. Wow, when I did it was like I actually saw what I had been feeling. I saw my left diaphragm drop and my lung expand, but on the right side the diaphragm was way high, seemed like more than half way up my lung...and it just kind of fluttered. Interesting! Especially when the Dr. said, "so it's been 9 weeks uh, usually after that long, it probably won't go down." I remember saying, you've got to be kidding me! (As if someone would joke about that) Seriously, I just couldn't fathom this...and after SHOULDER SURGERY! All I wanted was my shoulder fixed.
The next question was how did this happen? Allow me to back-track a little. When the term elevated diaphragm was first used by the lung specialist I asked my local Dr. and a couple of other Dr.'s that I knew and the general thought was, "what does shoulder surgery have to do with a paralyzed diaphragm?" One Dr. called me back after researching this and said, "did you have a block?" I said yes! He explained to me that there are occasions when a "block" for pain is linked to a paralyzed diaphragm. He said that the nerves go from the brain down your neck, then some in front of the heart and some behind the heart on down, and there is a nerve that affects your diaphragm. Forgive me if some of the terms I'm using aren't correct...I'm a music guy. :)
Of course, my first thought was I wish I would've known this was a possibility! I didn't have a block with my first shoulder surgery and did fine! Oh the thoughts and questions that were going through my mind. That "pet-peeve" of mine was rearing it's ugly head! Ok, let's be honest, I was mad! This affects what I do for a living. Singing! Will it get worse as I get older? Will the notes still come out? Plus, I've built up my lawn mowing business to several yards in the summer. (getting out of debt $$...thanks to Dave Ramsey :) Can I mow, weed-eat, edge, on my day off...all day in the hot sun like I have been? I've been looking forward to playing basketball again with my kids, maybe on a church league, and not having to shoot left-handed...I'm also tired of having to throw a football left-handed...and imagine throwing a baseball left-handed, then putting the glove back on to catch it...taking the glove back off to throw it...little things...but frustrating!! Well, I will try to stop that ranting, but when you bend over to tie your shoes and have to come up for air...once again...frustrating. Let me be the first to say I need to lose about 30 lbs...but as you can tell, I am active. Always have been. Ask my neighbors who have seen me walk / jog in the mornings for the past 3 1/2 years since I moved into the neighborhood. Enough of that!
For those who know me, you may be asking where is my faith in all this? Well, I think you can have faith, believe in God's Word, and also look for answers / help with physical issues such as what I've been describing. So many times I have used the Bible verses, "All things work together for the good, to those who love the Lord and are called according to His purpose," and "I know where my help comes from, my help comes from the Lord..." I still believe that with all my heart, but it is difficult to ignore your "gut feelings", especially when there have been times they've been correct. Not always, but a few. Because of that, I share this with reservation, because I can't see people's hearts. I do realize that, but when you share passionately what you are feeling and how it is affecting what you do for a living, the concerns you have...and the surgeon kind of pats you on the back and quickly says as he's walking out the room "everything happens for a reason" and then by phone the anesthesiologist says "Man, I am so sorry, I've done hundreds of these and this has never happened...there's nothing you can do, but I will pray for you...good luck, bye". Please hear me, I believe in prayer, I am praying and I have friends and family praying, and that means more than anything, it just kind of leaves you feeling strange when there are exam room conversations like what I've experienced. I will give them the "benefit of the doubt" as far as their sincerity till the day I die, unless God reveals something different, it's just that sometimes these scenarios leave you with more questions, like this one. I had a conversation with a friend of mine that recently had a similar shoulder surgery. He was telling me about the block, and how he asked the anesthesiologist if he could be "knocked out" when the Dr. told him about it. The Dr. told him that he had to be awake so he knew when he hit the right place, that his arm would automatically go up. Immediately I thought, I was never told that and I definitely don't remember them getting ready to go into my neck with a needle. Now, I was given an explanation of a "amnesia" type drug that causes you to not remember...but my friend certainly remembered. Remember my pet-peeve? I'm feeling guilty again for questioning, but I needed to get all that off my chest, especially in case there is a Dr. out there that understands my thoughts and questions.
As far as singing, I will sing as long as I have breath...even if it's half a breath! "Let everything that has half-a breath praise the Lord." :) I will continue doing what I'm doing, Satan will not keep me quiet! As the Ron Kenoly song say's, "ain't gonna let no rock, out praise me. Ain't gonna let no rock cry in my place." After saying all that, if there is some help out there to get my breath back, whether it is therapy, surgery, some new procedure, I am open to that. So far, I have been told by the Dr. that there is nothing I can do.
So, why did I type all this? I tried to look up and read about causes, symptoms, etc. about elevated / paralyzed diaphragms and although I learned some stuff, I wanted to read real life, detailed experiences. I really didn't find that much. I also wanted to let people know that if they want to be the least bit active, especially if you sing for a living or an athlete, seriously think twice about a "block" if you are considering shoulder surgery. The first 24 pain-free hours are not worth what I have been through and what I'm going through. Whether by prayer or the diaphragm just simply took a few months to go down, either way I will shout it from the mountaintops and give God the praise, and if there is a reader to this will be the first to know if the diaphragm goes down, but if it went down today or tomorrow and I went back to normal, I would still say NO to the block! Believe me, you don't want to be the "1" out of hundreds or thousands to hear these words from the Dr, "you are the first one this has happened to, I am so sorry, nothing you can do." Forgive me for allowing my pet-peeve to get the last word, but here it goes. If I'm one in hundreds or thousands, could it be a mistake and not just an exception? Maybe I will never know, and although I will not let it consume me nor allow me to hold a grudge, or let it keep me from what I'm called to do, periodically, the question will remain.


  1. Roy, you will be in our prayers. We had no idea that you were dealing with all of this mess.

    Brian Thornton

  2. This article talks about your problem:

    This tells about a possible surgery to correct:

    This is someone who had similar problem:

  3. This is photos from a repair to a paralyzed diaphragm surgical procedure:

  4. Roy, so sorry to hear all this. Our thoughts and prayers are with you!

    Jeff and Danese Christmas

  5. I have recently been diag. with an elevated diaphragm. According to my drs. nothing can be done but oxygen. I also have b one cancer, but no sign of it in any organs nor diaphragm. I am on oxygen but desperately want to get off. If u have learned of new procedures since this blog, plz let me know. thx

  6. I have had a paralyzed left hemidiaphragm since 96. Just this month I underwent a thoracotomy to plicate the diaphragm. This surgery allows the relaxed diaphragm muscle to be pulled tight to the give the lung the room to expand. I was at 57% expected exhalation. I hope to gain approx 20% after recovery.

    The main reason I chose to go with the surgery is the issues with the diaphragm moving up allowing the stomach and intestines to push against the lower lung. In addition, the reflux and other digestive issues I Had been having for years were finally tied to this.

    So far, recovery has been painful at best. Fist follow up is tomorrow.

  7. I too had paralysed diaphragm after a shoulder surgery but I had not gotten the block - just general anesthesia. Getting nowhere - just more questions and more expenses. A bit nervous as it seems to slowly be getting worse...

  8. I feel your pain and frustration Roy. I'm 65 and 2 and a half years ago, I underwent a back fusion. Back was screwing up my golf game. Keep in mind, aside from the sore back, I was really healthy. Not overweight or anything. Went in at 8 am, came out some 5 hours later and first thing I told my Dr. was I'm having trouble getting a deep breath. He sent me in for a chest X-ray and everything was find. Still saying the same thing a few days later, a CT was performed. All is ok. Forward 3 months, Dr. sent me to a Pulmatory specialist who determined I had a elevated diaphragm. He pretty much said same thing. May not go away. Well after 2 years and a whole week at the Mayo clinic, I'm still suffering with this pressure in my lower back and under my rib cage and still gasping for air. I look healthy, just have one hell of a time breathing. Pretty sure you need that to live a full life. BTW, been to muscular neurosurgeons and some said " maybe it will go away in time ". Still here. Guess what I'm looking for is anyone who has had plication and how it's helped. I do things and every 5-10 tries, I get a deep breath. It's a miracle when that happens. Remember, not one breathing problem before surgery. Makes no difference now how I got it, what's the fix? Or is the fix worse? Opinions appreciated, but would rather have those who have tried some fixes more. Thanks for listening.


    1. Hello barry,
      Iam very interested in your story because I also had back surgery and as well developed phragmatic paralysis however doctors do not want to admit any wrong doing and instead they tell me it must be of viral origen. I never been sick and my life has changed for ever. Maybe is related to anesthesia or a allergic reaction to medication.
      I understand that the condition is related to shoulder and heart surgery however there is a group of people like us that developed the condition after back surgery. Please let me know

  9. Hey guys, I also have the same condition. I am now fifty and it "happened" 2 years ago. Am in great shape, just my left diaphragm not functioning:( also wondering about plication? Seems weird they want to fix it, but don't know what caused it

  10. Been reading this site for awhile now, always has really good posts and topics please keep it up! loads of blogs are going under lately from lack of new posts etc!
    Disc Herniation Frankfort