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scarface

Scheduled for ETS Redo on 06/16/17

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I am scheduled for a redo ETS with Dr. Port of Weill Cornell Medical Center in New York City next friday (06/16/17)

Although I have been through ETS before, and have been bracing myself for a redo operation for several years, I am still deathly afraid of getting it done again.  I am having last minute cold feet, second thoughts, serious doubts, etc.  

My consultation with Dr. Port was very quick as I assume he is busy.  He made no promises of a good outcome and explained to me the increased risks associated with redo ETS procedures.  Although I am well aware that he was only being honest, it still would of been nice to hear some encouragement.  Hope for the best but plan for the worst, as he so put it to me.

I have already scheduled a day off from work for next friday and I am making my travel plans right now.  I will keep you all updated.  

Edited by scarface

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Good luck scarface, I haven't read why you're going for a redo (or if you've even mentioned this in other posts) as I haven't been on for a while, popping on every now and then. 

Just wanted to say hope all goes well x

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Goodluck Scarface,

I have been reading this and other articles about FB articles for the past months. I am on the fence about all of this. I hate FB and will trade it off for CS (Just don't know how severe it will be for me, etc.)  reason I'm on the fence... 

I'm not sure, but I re-call you wanting to do surgery with Dr. Nielson? What changed your mind? Thank you in advance! 

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Goodluck Scarface,

I have been reading this and other articles about FB articles for the past months. I am on the fence about all of this. I hate FB and will trade it off for CS (Just don't know how severe it will be for me, etc.)  reason I'm on the fence... 

I'm not sure, but I re-call you wanting to do surgery with Dr. Nielson? What changed your mind? Thank you in advance! 

I would still prefer to do it with him.  I believe he has taken the most personal interest in the procedure and has improved it and developed the most advanced technique.  His Micro ETS is less invasive and more precise than regular ETS.  Just look on YouTube of how some of these other butcher surgeons perform it...they collapse both lungs, make multiple incision sites in your chest, are very rough with their handling of the sympathetic chain, and all of the cauterization I see is used very broadly with lots of surrounding tissue getting damaged and there's lots of bleeding in some of the videos.  It actually angers me to see how little pride some of them seem to take in their work.

The reason I'm not going with Nielsen is that:

1.  His office absolutely refused that my insurance would pay for it.  I had my insurance company repeatedly confirm it would be covered but his office was worried that they would deny coverage after surgery and they wanted me to fork over all the money to them up front.

2.  I had a phone consultation with Dr Nielsen and when I asked if he would remove my clamps while he was doing the redo he immediately jacked the price up an additional 6k.  He said he has to spend additional time resecting the tissue because the clamps get stuck to it.  I don't know exactly how much longer it takes to dissect the clamps out, but I do know that it doesn't take 6k worth of his time.  When I asked my current surgeon he just said "Yeah sure" and that was the end of it.

If you're going to get ETS then you might as well get the best version of it, but I'm not going with Nielsen as a personal decision due to the unnecessarily higher costs and also because I just didn't like my communications with him and his office.  To be fair, I also don't like the fact that the surgeon tomorrow will be using the traditional technique, but I'm hoping that his 20 years of medical experience will guide him to being gentle with the tissue and not using more electrocautery than needed.  Since I've already had ETS with the traditional technique, I figured I might as well not worry about having the same approach done again and will take the risk that he will be cautious.

The first idiot surgeon gave me a brachial plexus injury somehow.  From what I read that is rare and hard to do.  It isn't a side effect of the sympathectomy, but rather from being rough with the endoscope and/or twisting people's arms in ways they shouldn't be twisted.  So he must of been doing something really stupid and being careless with me while I was unconscious.  So, I'm hoping the surgeon tomorrow doesn't do anything like that either.

You just can't win with this condition.  Not living with it, not with the surgery for it, nothing.  Just gotta pick what you believe to be the least of all evils.

Edited by scarface

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Thanks for the reply Scarface,

 Yes, I am interested in having my ETS surgery with Dr. Nielson. It seems to me that he has a substantial amount of ETS surgeries under his name, = more experience? Hence, maybe why he found a new "technique" for the surgery? Or maybe that is just a sale's pitch? I can't be for sure. What I could say, is that I have stumbled across many good reviews, and some of which were a little demoralizing. Just with a simple "Dr. David H Nielson reviews", I was able to find many shady things about his practices...

 I feel awful that your first experience wasn't the best, we sufferers know how much it means to find a "cure" is, we all want this nuisance to be solved and possibly, even cured! All I know is that in my current situation I would trade-off CS, for the ability to be blush-free! I hate the feeling of being anxious because of my genetics to reddened quicker than most (The average.) 

Sounds to me he is very experienced and is taking a safer route in the procedure (Knowing what has had good success in the past.) hope everything goes well for you, I really do. We all do. Keep us updated!!!

Edited by Charizard

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I'm here in pre-op.  Just waiting to get called back to get ready to go into surgery.  There are a million thoughts running through my head about if I'm doing the right thing and making the right decision.  Every fiber of my being is telling me not to do this and yet I drove all the way here and am waiting to get it done.  I am praying that I don't wake up and immediately regret my decision.  I will update you all later.

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Hey all.  I woke up a few hours ago.  So far, so good except for soreness.  

Dr. Port and some other members of the surgery team told me that everything went well.  My right side was easy, but my left had more adhesions so it took him longer to dissect that side and he had to make a new incision site to help him so I will have an extra scar on the left now.  Right now I am in the step down unit and have a drainage tubes in both sides due to bleeding.

My biggest dread was waking up and feeling instantly that something is wrong like corposcindosis, severe CS, or anything really.  But honestly I feel pretty normal.  I have numbness all over my upper chest but it doesn't bother me that much.  My feet, lower back, and hands are all warm and dry.  No CS at all at this point but it is still way early.

I asked Dr. Port if he removed the clamps and he said he couldn't see them so they weren't removed.  I read a lot about how foreign objects in the body like the clamps can really irritate the tissue and cause inflammation of the nerve (neuroma).  I was really disappointed when he told me that they aren't out since it would of given me a lot of piece of mind.  But he said that sometimes that clamps can fall off and who knows where they go?  So i'm hoping he couldn't see them because they fell off and aren't on my sympathetic chain but I will never know for sure anymore so I might as well just never think about it again.

No blushing yet, but I haven't been in any blushing inducing moments.  As I said, so far so good.  I will take a look into a mirror when I get a chance to see if there is any horoner's sydrome.  

Any questions just ask.  I am extremely thankful that I am one of the lucky patients...so far at least.

Edited by scarface

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Gosh what are those clips made of? I assume that's why the blushing came back because they fell off? Should you get an X-ray sometime to see where the hell they are?

Titanium I believe.  Dr. Port said that the lungs can rub against them each time you breath and over time they can work themselves off.  I'm not sure what he meant when he told me that he "couldn't see them".  I mean they must of been right in the vicinity of where he was working.  Odd way to phrase it I think.

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Day 2.

This morning another Doctor who was finishing her fellowship in Thoracic Surgery and assisted Dr. Port for my case came to see me and see how i'm doing.  I talked to her about the operation and she assured me that everything went good.  I asked her about the clamps and she confirmed that they looked for them but they were nowhere to be found.  The sympathetic chain at T2 was exposed where the clamp was applied but the clips just weren't on.  Just like Dr. Port said I suppose they fell off on their own so that is much more reassuring to me to know they in fact aren't on.

CS is non-existent right now.  In fact, another unintended effect was dry, warm hands and feet.  My hands and feet were always cool and mildly sweaty.  It never bothered me and I only went for ETS to address facial blushing.  But if it resolved hand and feet sweat then I'll happily take it.

Mentally, I am still in a fog presumably because I am on pain medication, haven't eaten anything since Thursday, and am very sleep deprived.  We'll see how this mental fog clears up once I am back home and off all meds.

My upper chest is still completely numb.  I forgot to ask the Fellow about this but it may be due to numbing medication they injected in my armpits since they had to put the drainage tubing in.  Hopefully this wears off but it's really not that big of a deal if it doesn't. 

Best of all, I've had plenty of nurses and people coming into my room and no blushing.  Not even anxiety about it.  Those aren't real tests but when I get a real one I will report back.    

Edited by scarface

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Day 3

So far so good.  There is still some soreness in my chest and there is also a feeling of chest "tightness" which I suppose will go away with time.  The skin on my upper chest is still completely numb.  I am still in the hospital and will be getting discharged in a few hours.

Last night after a cup of coffee I started to experience moderate CS on my feet.  The episode lasted about 1 hour then stopped.  This morning I had another cup of coffee and no sweating on my feet at all.  Weird.  Hands have remained warm and dry the whole time.

Last night and this morning I was walking around the ward where I and all the other post surgery patients are held.  I ran into a few groups of nurses and experienced what would of 100% been blushing episodes since I was put on the spot in front of a few females.  NO BLUSHING.  Not even a creeping feeling of a blush coming on.  The anxiety associated with it has instantly lifted as well.  I was able to walk around freely and had no problems being around groups of people.  

Regarding my mental status, I have been getting doses of pain medication every 6 hours or so.  I believe the medication is causing some nausea or something along those lines because I still feel that mentally I am in a slight fog.  It is hard to think clearly the way I used to...perhaps I am just distracted by the slight pain/tightness in my chest, the medication I'm taking, and am still overwhelmed by this whole experience.  I believe i'll have to just go back home see how I feel once I'm back to my "baseline" lifestyle.  

Edited by scarface

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Day 4

I got discharged from the hospital last night.  On the drive home my feet felt pretty hot but I didn't feel sweating.  It was about 80 degrees and humid outside too.  It felt good to sleep in my own bed again when I finally got home.  

On my way to work this morning my feet again felt hot and this time I noticed mild CS on my feet.  There seemed to be a very thin film of sweat on them most of the day.  Might have something to do with the fact that I wear leather shoes which are not breathable.  When I took my shoes off my socks were hardly wet...just very slightly damp if anything.  Overall not an issue at all but hopefully this doesn't get worse.

No CS anywhere else on my body at all.

My hands were very dry today.  I had to put moisturizer on 2 times.  I'm hoping they don't stay this dry all the time as it can be uncomfortable.

Most of the skin on my chest is still completely numb.  A few spots seems to be getting some feeling back.  I will see what happens over time.  

NO BLUSHING.  I had what would of been another blushing inducing moment at work today and I was able to stand there calmly in front of my co workers and just be myself like a normal person.  Walking into work this morning I felt no anxiety about blushing, and after this moment I spent the rest of the day again with literally zero blushing related anxiety.  It didn't matter where I was, who was there, or how many people. etc.  I was no longer wasting energy trying "read" every social situation I was in to judge if the conversation would ever turn to me.  No question about it, it feels life changing.   I was actually able to do a better job at work too.  My thoughts were calmer, clearer, and hence I was able to focus on the tasks at hand instead of wallowing in ridiculous blushing purgatory.  I always knew the blushing was a distraction, but I did not realize just how much of a distraction until today...life instantly feels simpler.

Once I got home from work I took the last bandages off from under my armpits.  I was not all that pleased with what I saw.  Before surgery, I asked Dr. Port if he could go in through my previous incision sites to minimize scarring.  He said he will if he can, but that sometimes he is not able to on redo cases because of how lung adhesions form and how he has to dissect them free from the chest wall.  Anyway, there are 2 new puncture sites on my left side and 1 new puncture site on my right.  One of the new puncture sites on my left side is covered by my arm when I put it down, but both sides have 1 puncture site forward of my arm as well, so if I'm standing with my arms down you can see them both clearly.  I'm hoping that these heal up well, but judging by my last ETS the scars will be somewhat visible for the rest of my life.  If I lift my arms now, there are going to be 3-4 visible scars underneath and it it looks pretty ugly.  I wish he would of made the punctures higher up where my armpit hair grows because the hair would of covered them better.  With Dr. Nielson and his Micro ETS approach the skin is much more preserved.  I'm not sure if he can use this same Micro approach for redo procedures due to the lung adhesions, but it's worth a shot to ask him.  I feel that the multiple puncture sites are likely related to the numbness of the skin on my chest due to damaging nerves every time you stab a new hole.  With Dr. Nielson I would think the less invasiveness of just a single, smaller puncture site would minimize the risk of the nerve damage/numbness as well. 

Right Side:

210itd3.jpg

Left Side:

2zsqxhf.jpg

Regarding the mental fog, it seems to have improved after getting a good nights sleep last night.  I can't say definitively if there were any psychological changes since there is no way to objectively measure this.  One thing to keep in mind though is that ETS has been used to treat PTSD in people, so it would not surprise me if there were some changes in me mentally.  If there were, then they must not be significant because nobody said anything to me about it today.  I'm not worried about it anyway for three reasons:  1.  I feel fine.  2.  I knew there was a risk of this happening and told myself that I accept the risk.  3.  My nerves were cauterized and there is NO going back for me anyway, so why bother worry about it in the first place.  Regardless I overall feel much happier now just that I am not blushing anymore.

4 days out and things are pretty good.  

Edited by scarface

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congrats on your success

I have two questions if it's okay

 

How much was the surgery?

 

And

 

Are you absolutely one million percent without a shadow of a doubt sure that you are truly not blushing anymore and how can you tell with certainty?

 

thank you so much in advance

Edited by OU1990

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I'm not sure how much it costs yet.  I haven't received my bills.  Prior to the surgery I spoke with my insurance provider and they told me it is covered and that Dr. Port has contracted rate.  They also told me my maximum out of pocket was around $1100.  So, i'm assuming my personal responsibility will be around that much.  But again I haven't received my bills yet so I don't know.  I will update when I get them.  But how much you pay will not be the same as me since it depends what surgeon you go to and how much of it your insurance will cover. 

I am about as sure as I can be.  I know what a blush is, believe me.  If I am blushing, then I'm doing so without feeling any burning sensation in my face and without my mind going into a panic attack.

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Day 5

My chest tightness is pretty much gone.  

Soreness in my armpits is almost gone.

Feeling is slowly starting to return to my chest skin.

Mild CS on my feet again today at work but my socks didn't get wet.  Honestly I had mildly sweaty feet before my ETS.  Right after my operation I had dry feet for the first two days so I thought that was the new normal, but unfortunately it has returned to about baseline level.  So I'm not even sure if it's fair to call it CS.

No CS anywhere else.

Dry hands again and had to use lotion.  

Mentally I feel totally normal.  

 

From here on out I'll probably update once a week, once a month, or if I experience new or increased symptoms.  If anyone has questions just ask and I'll reply.  But basically I was a pretty lucky patient and have very little side effects from ETS thus far.  

Edited by scarface

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