Damage during VATS surgery
 

I have had a severe lung restriction ever since my VATS surgery by DR. Regan in 2009. I was put on a respirator in the post anesthesia area. I have been short of breath on any activity , such as climbing up one flight of stairs and show only a 45% lung capacity. Today i finally had someone do a nerve conduction study on my phrenic nerve which controls the diaphragm muscle, thus breathing. The conclusion of that study and my diaphram muscle study show the phrenic nerve is definately damaged.
DrRegan never addressed why i was put on a respirator , or helped with any investigating after the surgery, in fact he never came to see me.
I finally have a diagnosis and once again i made the diagnosis!!!
I also found one neurosurgeon in the country who has been studying the nerve for 20 years and thinks he can surgically fix it. I am very excited. Still not happy with Regan
judy

re damaged nerve
 

Judy,
That is exciting to find someone that thinks he can repair the nerve. Is that here in CA? Hope it can be done and give you back your respiratory capacity.
Please keep us informed!

It's great that you are making some progress. Who is the surgeon that says he can fix it?

Keep us posted. All the best,

mark

The neurosurgeon is Dr.Abbott Krieger who luckily is here in Beverly Hills. His son with a thoracic surgeon will do the surgery under the guidance of his dad. Dr.Abbott Krieger is an older gentleman and has stopped doing the actual surgery.
I called my spine surgeon in Pasadena , Dr.William Costigan, as he wanted to know what the results of the test were. I told him i am also sending the results when i receive them to Dr.Regan. He is then going to call him. He has called, sent a letter and spoke to him in person about my lung damage and lack of care. Can't wait to here what Dr.Regan has to say.
judy

Judy,

We all hope this surgery works for you and your breathing can get back to normal. My fingers are crossed.

Dale

I emailed my endocrinologist to let him know how the test went at Cedars Sinai hospital. I told him it was available on line. He is on staff there and emailed it to me sat morning. I am so glad as i have not received it from the hospital yet. I sent it to all doctors involved or asking to be involved. DrKrieger's office is setting up an apt. with a thoracic surgeon for me . I should here early next week. My pulmonologist said it is nothing we didn't already know. Of course he totally disapproved of me even having the nerve tested! The report came out with a slight weakness on both sides of the nerve, but also a 35% decrease on the injured side. so at 45% lung capacity now, i would go up to 80% lung capacity if the surgery worked. Big difference for me.
My pulmonologist thought it was a little improvement and maybe not worth the risk. A friend of mine said, i bet if you tell him he is getting a 35% decrease in pay it would no longer be a little !!!
So i hope it all happens soon. But once again i am just recovering from a big surgery and headed into another one. Story of my last 3 years.
judy

Judy,

Here's hoping you can look back at this time in your life as your 'surgical era' and never have to deal with anything like this again. Twenty or so years ago I recall only being hospitalized for giving birth. Now I don't even want to count the surgeries I've had (really not all that many). Even if the surgery fixes whatever as intended, getting over the surgery takes a lot out of us.

So if this works, your era is done, finished, over, caput and you can finally get on with your life. My fingers are crossed. When is your surgery?

Dale

more surgery
 

Go girl while you've got that steam! It's exciting to read that you have that much possibility of improvement! Am looking forward to reading more and am cheering for you in my little corner of So.Cal! Go Judy, go Judy, go Judy!!!!;):D

Dale, i am not sure about this being the end of surgery , i still have a few more problems to deal with .
Maria thanks for the cheering on, from my little corner of so,. cal. Sierra Madre is a really little town.
judy

My pulmonologist derailed any hope of having the nerve surgery. I had a message on my phone on monday saying that the neurosurgeon had spoken to my pulmonologist and they had decided surgery was not a good option. My pulm. has never been for even finding out if the nerve was damaged. He keeps going back and forth blaming other things which have been corrected. Like my severe kyphosis. He just keeps saying my problem is ventilation. No kidding, i can't get enough oxygen in and everything works fine. Except my diaphragm muscle and my phrenic nerve. He just won't accept that and told me the surgeon would do more harm than good.,
He is used to handling nerves so i don't know why he would say that. I cried all day monday and little bits yesterday and today. I spoke with both doctors on monday and was sill kind of in shock and did not ask the right questions .
Oh i was so looking forward to breathing normally again. And having energy. I am told i am so tired all the time because i use all my energy to breathe.
life goes on and i am lucky for that.
judy

re no surgery
 

Judy,
Sorry to hear your pulmonologist didn't want to support the decision for surgery and at this time has dashed your hopes. Do you think perhaps you'd consider getting several more top calibur pulmonology consults to see what another pulmonary person might say? Not that you'd want to switch specialists though just wondering it as it seems worth checking out if you're able.

I realize this specialist knows your case and must have your best interest in mind (being able to breath on your own however limited) though I wonder if he is also staying in a comfort zone and the other surgeon most likely wouldn't proceed if your Primary specialist isn't going agree. Not that another pulmonologist would agree either although maybe have a more open mind or have some experience w/this (somewhere in this country or another)?

This suggestion might not even be viable considering it takes so much energy for you to breathe let alone do other things that take energy re travel and such.
I know I'd be bitterly disappointed as well altho hopefully be glad to be breathing as well. I'm hoping something will work out for you on with this.

I'm so sorry to hear it Judy.

I don't pretend to understand any of the issues involved with the phrenic nerve, but if you've been misrepresented by your specialist, I hope you can get that sorted at least.

Hope u are ok.

Thanks for your kind words. i was already to seek another opinion from someone i saw last year. Then i received a long email from my pulmonologist. He told me that the neurosurgeon called him and told him he did not think he could help me . I have had the VATS and lung surgery in through my chest and there is more than llikely lots of scar tissue in there. Everything would be healed and the nerve most likely really embedded in it all, so to try to decompress it at this late time would probably do more damage than good. It helped me put the fixing it to rest although i am still very upset. no one would listen to me last year when i said it had to be the nerve. DrRegan kept saying nothing happened (immediately after he removed the disc at T7-8 he had problems with me breathing!) If he had been man enough to help me figure it out after it happened, maybe then it could have been repaired. Now it just makes me madder at him.
Thanks for letting me vent, i'll stop now!!
thanks again
judy

Well you've got every right to be angry about how you were treated... Just bloody outrageous really the way some surgeons treat a patient with complications as a problem to be swept away.

oh
 

Hey Judy,
That makes more sense then w/Neuro gving reasons why doesn't think it would work. I had scar tissue on my S1 nerve that for years seemed to have given me horrendous lower body burning pain (buttocks, both legs-5 years post surgery). It did get better. Don't know exactly what happened tho am glad of it and I hope somehow if your phrenic nerve is embedded in scar tissue somehow that will get loosened up over time. I wonder if something like trying to sing would help (lung expansion). Probably sounds crazy since you have difficulty breathing tho just wondering (stretching out area as best you're able).

Recently I had an experience that ticks me off w/a specialist post surgery and I had been very careful surgery and started to have some symptoms that I explained in depth and was seen for right away and wasn't blown off though was not taken seriously enough. So based on complaints was seen again by specialist and again full details given tho still left feeling symptoms went unaddressed. Next day I went to Urgent Care to be seen. Based on that visit reported back to surgeon and was properly diagnosed "I think" although I'm going to see my PCP today to make sure and whatever other doctor I need to see but I'm ticked off that it took an extra week to get started on meds that should help ... I reminded the surgeon I had given her all the symptoms last week and there was actually something she could culture but didn't. Arggh.

I'd be really ticked off as well if suffering the permanent damage. Bad enough it happened, really rotten that the surgeon didn't listen to you and at least try to find out what was going on. It seems more common here in the US than not. I think it's fear of litigation if admitting to anything (with most surgeons/doctors).

Judy,

I don't want to rehash what happened but also, while supposedly in the care of Dr. R - he delayed information that could have changed the outcome of my nerve damage/healing process.

Having said that, I do believe the man has gifted hands. His ego is also so gifted it gets in the way and has caused its own degree of suffering, of which you have first hand knowledge.

I'm sorry for your current diagnosis. The explanation doesn't make it any easier to swallow. I wish there was more I could say....

Please keep us updated, Dale

I'm sorry this happened to you too Dale. I am thinking i really want to face the man and tell him the details. When i had the nerve tested at the same hospital as the surgery, the doctor assured me he had experience in testing this nerve as he said they test the ICU patients who have breathing problems. well i was in their ICU on a respirator and was not tested. I wonder if that was because i had no surgeon ever appear?
Not sure what i am going to do about Regan. i will ask my wonderful spine surgeon on Tuesday when i see him.
judy