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Author: Subject: Bouncy23's Journal - Nussed by Dr. J on December 22
bouncy23
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[*] posted on 12-9-2015 at 08:27 AM
Bouncy23's Journal - Nussed by Dr. J on December 22


Hi everyone,

I'll be getting Nussed by Dr. J on December 22. My HI is > 4.0. I am 26 years old, 6' 2", about 180 pounds, and am unaware of anybody in my family with PE. My PE is not terribly deep but it's pretty broad and spans upper and lower.

My journey to surgery is long, but I'll summarize some of the key milestones.

0-18: Poor athletic ability as a child. As a result, never got into sports. I remember never being able to finish the 1 mile run in gym class. Did track in high school, and was a slightly above average sprinter, but never did more than 400m. At age 16, doctors first noticed I had high blood pressure (about 145/80 sitting down). I have been on a variety of BP meds since age 19. Some work better than others. My BP is generally controlled although it does swing quite high when I move / stand.

18: Learned that I had PE, just by googling.

19-24: Got really into lifting weights and nutrition. Put on a lot of weight and got pretty strong - went from about 160 to 210. I definitely plateaued on the full body exercises very quickly, and my aerobic ability was still non-existent. If I worked really hard, I could work up to running 3 miles without stopping, but that took several months, and if I took a couple weeks off, I lost it all.

24: During this period, I began talking to doctors about my PE. My doctors did not know what it was, and since my appearance was not as bad as some, nobody wanted me to pursue it. Finally, I got a referral to a chest disease specialist who put me through every test in the book. The last test was an invasive stress test, which involved cardiac catheterization. It was TERRIBLE. (Imagine biking for half hour while having tubes in your neck and wrist and getting blood drawn every 60 seconds). The docs concluded that my v02 was severely limited and my anaerobic threshold was very low. They said it COULD be the PE, but it was more likely that it was "preload failure." They also said I had POTS. The funny thing is, my BP gets higher when I stand, unlike a typical POTS patient.
They put me on a drug which, subjectively, gave me a little more "oompf," but I didn't notice anything significant.

25: BAM. Shortly after turning 25, I began feeling strange. While walking, I felt like a gust of wind would knock me over. I felt dizzy, but not like the world was spinning, just like I had no connection to the ground. I felt weak. I kept going to the gym, but halfway through what should have been an easy exercise, I was breathless, and my appendages started feeling heavy and numb. I pressed on, but things got no better. I felt like a fish out of water. So I went to the ER. My HR was high-ish (about 130) and my BP was high (about 170), but that was it. They said it was anxiety, gave me some Ativan, which knocked me out, and that was that.

Since that day, I haven't been the same. I get out of breath walking up a single flight of stairs, I can no longer go to the gym because I can't breathe and feel like I'm going to pass out, my heart will randomly skip beats and begin racing out of the blue. My ankles are swollen at the end of the day. I have very significant day-time fatigue. I do deal with anxiety, but it always begins with the physical symptoms (typically feeling like I'm breathing through a straw). My doctors have tested me after all of this, and nothing really looks different. My echo and chest MRI look normal aside from the PE. MY EKG does say partial RBB and pulmonary disease pattern, but my doc says "it's just from the pectus" and not to worry.

Last June, I finally went to Dr. J. I wasn't getting anywhere with my docs and was desperate for an answer. She said I was a candidate for surgery so here I am! Honestly, I would not have gone to see her had it not been for everything that happened last year. Yes, my chest doesn't look great, but I was making good progress everywhere else in the gym, and was loving life. Since 25, though, life has been pretty rough. Even walking to work is a challenge. I feel like a geriatric. Hopefully this is the answer. If it's not, I'm not sure what I'll do!


Bottom line, excited for surgery, but a little nervous that there IS something wrong with me other than the PE that might compromise my ability to make it through the surgery. Feeling overall optimistic though.


Plus, super excited to get to play some Fallout 4 during my down time :)


EDIT: One additional symptom that started around age 25 when everything went downhill: I developed "pulsus paradoxus." Basically, whenever I take a deep breath, the radial pulse in my wrists disappears." My doc didn't believe me when I told him this, but he confirmed it! Usually this symptom means something really bad is happening (e.g., cardiac tamponade), but unclear whether it's related to the PE.
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ecurbliam
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[*] posted on 12-9-2015 at 06:35 PM


Welcome Bouncy , that was a very good (1st?) post .
You are very knowledgeable about your personal medical history and seem to draw your logical conclusion that surgery is the answer.
What if thoughts are so typical of pre op PDSG ers at this stage .
It is completely normal to be scared , anxious and apprehensive.
You are in the most qualified hands and Dr J will get you through this and at 26 you have a very high chance of a great outcome which will hopefully improve your physical symptoms and also give the added bonus of cosmetic improvement.
Please take some before photos and post at some point.
Good luck on the 22nd and enjoy your gaming in your "down time"
All the best




Cheers Bruce
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[*] posted on 12-20-2015 at 10:03 AM


Thanks, ecurbliam! Here are some pics. I didn't get very good angles, but hopefully it's somewhat visible.

http://m.imgur.com/a/doBPN

It's not terribly deep, but it is wide and long. Also here's a video of me breathing. I know chest breathing isn't the best, but diaphragm breathing makes me lightheaded and nauseous. In the video, you can see the center of my chest go in during inhalation. Anybody else have the same thing?

http://youtu.be/rRZ6DksniGI
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[*] posted on 12-20-2015 at 07:34 PM


Bouncy, you have a very similar PE to what I had before my nuss surgery from Dr. J just over a year ago. I got three bars i can still feel them but they don't cause pain anymore... I also had most of the symptoms you have now most notable the exercise intolerance and breathing/dizziness issues, which for me have improved tremendously. I can't wait to see your results.
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[*] posted on 12-21-2015 at 05:15 AM


Your story sounds just like me, symptoms really getting bad around 25 years. I do not miss those days at all!! You will love the energy you will find after you are all recovered! All the best to you tomorrow. We are all here for you to answer any questions and for support. Can't wait to see pictures and hear about your experiences :) every story on here is gold for those following behind!



"Man never made any material as resilient as the human spirit."--Bernard Williams

My journal: http://www.pectusinfo.com/board/viewthread.php?tid=11088
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[*] posted on 12-23-2015 at 09:44 AM


I'm alive! Went well - 2 bars. Extremely tired, lightheaded, and weak. Moderate swelling in arms and legs. Worst thing is the dry mouth. Think it took me 5 minutes to eat a saltine and I basically had to mix it in a water soup 😞. A bit of nausea too.

Chest looks very good. Pain is not bad - 5 at most.
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[*] posted on 12-24-2015 at 08:23 AM


Good good good! Will be following your recovery. I'm flying down to Phoenix on January 3rd for surgery with Dr. J on the 5th. Hope you're well & home by then! I'm a redo, and much lighter (~150 LB) but I am 24/M. Will be interesting to compare / contrast experiences.
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[*] posted on 12-24-2015 at 08:23 AM


Update - I'm a lot more coherent than yesterday. Yesterday was day 2 - a bit rough but nothing unbearable. I began eating solid food and also walked around the floor (2 times, probably not more than 3 minutes per time). Was very weak, a little dizzy. Last night around 8 I began having very sharp pains in my left chest and back - like a stabbing burning. They upped my oxys a lot and gave me some valium. Eventually (about 11 or so) it stabilized. Pain has ben better today. Chest tube was out yessterday - all I have i the on q ball which will come out in a few days.

I'm scheduled to leave today, although I STILL haven't pooped. Have peed like a race horse though and I'm farting a lot so I think that's a good sign.

Feeling optimistic :)
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[*] posted on 12-24-2015 at 08:27 AM


Wow, looks like I posted seconds before your last update. Scheduled to leave... today? Less than 3 full days in the hospital? Really? Either way, sounds like a smooth-ish recovery so far. :)
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[*] posted on 12-24-2015 at 09:22 AM


good luck on the 3rd my friend! They are very responsive and really on top of the pain management.
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[*] posted on 12-25-2015 at 12:51 PM


Day 4: Today is Christmas. I came home yesterday, but was pretty out of it due to the valium and oxies. From past experience, I know that I'm very sensitive to pretty much all medications and these have been no different - they knock me out!. So last night as I got situated back in my (temporary) home, I was basically a sloth.

The first night, I slept on the bed propped up with a lot of pillows. I don't think that was a great idea, because I eventually slipped down and was almost flat by the time I wanted to get out which, as you can imagine, was difficult.

Today, I'm set up in a recliner, which is nice for mobility, but a little hard on the back. I've also stayed off the valium today, which helps with the coherence. Additionally, I'm skipping one dose of the quick oxy per day, mainly because I STILL haven't pooped :puzz:I know it's only been 4 days but I'd like to close that loop soon.

Pain has not been unbearable. Comes and goes but the schedule tracks my pain pretty well.

Went on one walk today that lasted about 3 minutes. On the coach, am consistently getting up to 1750 / 2000 and kept it mostly in the better/best slot. Not amazing, but I think it's bascially where I should be.

I have a bit of cough, which isn't great. That's probably the worst thing right now.

That's about it! Happy to answer any questions!



ALSO, for the first time in my life, the center of my chest and my abdomen moves UP rather than down when I breathe. Crazy right?
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[*] posted on 12-26-2015 at 01:52 AM


Merry Christmas Bouncy!

Congratulations on having the surgery done. It's all going to get better from here, but you do need to put the effort in if you want to get up & running quickly.

Lots of breath work - walk, walk, walk. Then stairs. Then swimming / stationary bike work.

The more you work those lungs in a low impact way, the better. No time for lying around waiting for recovery to come to you. :)




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[*] posted on 12-27-2015 at 01:04 PM


Thanks Tim! I'm pushing harder each day but agree I need to keep working!

Day 5

Yesterday, successfully pooped several times. All good with that.

Took out the On-Q pump today, which was, interesting...

Took a shower for the first time. Felt pretty lightheaded and a little sick after standing for 10ish minutes and beingin the heat, but made it through. My chest tube hole began oozing quite a lot after the shower. Called the doc and he said that was pretty common. Still oozing a bit but is getting better. ??

Yesterday, took 3 walks. Longest one was almost half a mile. Today, I want to get up to 1 mile if possible.


I'm taking pretty much all the oxy's recommended, but have only taken like 1 valium the whole time. So I'm pretty heavily medicated, but not maxed out. Pain is not terrible, but I have been very cautious.


On the coach, I'm pretty steadily passing 2,000 but am having trouble getting a lot higher than that. Occassionally I'll get close to 2,500 but that's about it. I think it's a combo of physical limitiation and pain. Any advice?


I've had a low-grade fever since leaving the hospital (between 99 and 100ish). The doc doesn't seem to be worried but I wish it was lower.

Overall feeling pretty good. Very swollen though!
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[*] posted on 12-28-2015 at 08:33 AM


Haven't been very good at after pics (more to come), but here's a hospital bathroom selfie snapped on the second day (I think). If you look at the before pics in my second post you'll see some pretty obvious upper PE. It's all gone now.

http://imgur.com/4Da37Ah
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[*] posted on 12-29-2015 at 08:50 AM


Well done Bouncy your upper PE is gone !
As others have said keep up the activity but don't overdo it !
Use the drugs to help you and then gradually reduce , don't be a hero ;)
Good luck




Cheers Bruce
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[*] posted on 12-30-2015 at 12:15 PM


DAY 8: My ankles and feet have begun moderately swelling, which worries me a little. I called the on-call doctor, who reassured me that it should be fine, but prescribed me a 5-day water pill just to help. Did other people experience this?

My breathing is improving, although I occasionally am experience "shortness of breath" while seated, like I feel like I need more air. Like air hungry. After I take a few very deep breaths, I feel better. It's kind of like I forget to breathe deeply or something. Thoughts?

Appetite is great, bathroom is pretty regular. Still moderate swelling in both pecs extending a bit to the back.

Yesterday, took 2 .75 mile walks. On the second one, I started to get a little panicky near the end and experienced a TON of chest tightness for about an hour after.

My pain this whole time has really not been an issue. I feel like I've been tricked or something. Like, sure it's uncomfortable but it feels more like I've been sitting on the floor too long than actual serious PAIN. Maybe the real pain is yet to hit...
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[*] posted on 12-30-2015 at 12:45 PM


nice to see you having minimal complications. congrats and keep the posts coming. I am 3 weeks away from my Nuss with Dr. J.
how is FO4 treating you? I was also thinking of getting that for post surgery too. :)
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[*] posted on 1-2-2016 at 02:16 PM


Hey PEctusaurunuss nice to hear from you! Good luck on your surgery! 3 weeks will fly by. Just started FO4 - so far so good! It's my favorite game series, and #4 is different than the other games, but not so different as to make it unenjoyable.


Update: It's been about 1.5 weeks since surgery.

Swelling:I've kept my compression socks that they give you at the hospital, which has minimized swelling in my ankles/feet. However, I now have a pretty hugely swollen lower back / upper butt. I look like a fat person, but just there. Very strange. It's pitting edema, so I can push my finger in it and the impression will stay. Nurse didn't seem to worried when I called Mayo. Told me I shouldn't be drinking very much water (seems like a strange command but they're the boss).

Pain: I'm still taking my regimented gabapentin, ibuprofen, and oxies. However, I'm only taking one 12-hour oxy and have spaced out my quick release oxies to every 5 hours instead of every 4. Pain is almost always minimal. Just feels like the kind of pain you would get from pulling weeds all day or something.

Sleeping: I've been home since NYE. We tried to order a recliner for me but it didn't work out, so I've been sleeping in bed with pillows propping me up. It's OK - I'll go to sleep at a 80 degree angle and wake up at like 25 degrees. Getting up is tricky, but it's more mental than anything.

Energy: Pretty good. Some shortness of breath after activity, but I've had quite a bit of energy so I'm happy.

Appearance: As the swelling in my chest has started to go down, I've noticed there is still a bit of a dent between my pecs. It's definitely within normal limits and not really visible, but I can feel it. It scared me at first because my chest was initially totally flat - like a Ken doll or something. My wife keeps assuring me that I'm crazy and my chest is now just starting to look normal. Crisis averted (I hope)!


Overall, I feel amazing. Before this surgery, as I sort of described in my OP, my life really sucked. All of my energy was spent just trying to survive. I couldn't catch my breath even just sitting down. As a result, so much of my personal life has fallen by the wayside. Now, I feel like I'm finally able to pick up the pieces. Today, I spent 6 or so hours organizing the house - getting rid of clothes, remodeling rooms, hanging pictures, organizing closets, etc. - all things that I had no mental energy for before. It's truly a miracle. I am finally living.
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[*] posted on 1-3-2016 at 02:42 AM


You're doing great. Now keep going.

If the pain is minimal, see if you can't reduce your pain relief tablets. Just a thought. I was glad to be off them ASAP, but everyone is different.

Keep up the walking. It is great, low impact exercise. Stairs are brilliant too.

Don't worry about thinking you have a dent. I kept seeing a dent every now & again when I looked in the mirror. It's just your mind playing tricks.

Keep strong & keep going!




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[*] posted on 1-3-2016 at 10:36 AM


Right On! Sounds good..

Organizing the house? At 1.5 weeks? Maybe that's the age difference between me and you (I'm 42). I think I vacuumed a small area week 3 LOL.

Good for you!

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[*] posted on 1-4-2016 at 09:23 AM


Today I half-sneezed for the first time since surgery. By far, the worst pain I have experienced so far! It was like I was electrocuted and I could instantly feel where both of my bars were across my entire chest. My stitches felt like they exploded! (they didn't).


Pro Tip: NEVER sneeze
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[*] posted on 1-4-2016 at 10:19 AM


Ha....If I didn't read the journals here I would never known...

When I sneeze its like a hurricane, I let it really rip.

So far I have plugged my nose at every feeling I'm gonna sneeze. It's worked so far thank god!
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[*] posted on 1-17-2016 at 08:59 AM


~4 weeks

Feeling better and better. I think it's right to think in terms of weeks, rather than days. I still have some days where I feel great (little pain, strong, etc.), and some days not so much. Overall, though, compared to week 1, thing are great. I'm walking long distances, pretty limber, and getting stronger. Will start going back to the gym working on light cardio stuff like the bike (running hurts too much with high impact). Will begin to work in weight training in 2 weeks.


Still dealing with dizziness (I think it's unrelated to the PE and docs are now looking at my head/sinuses), but the SOB is largely corrected. I feel very much like a new man. Recovery rates are good too. BP is a bit more controlled. Exercising HR moderately lower. (Working hard, it typically sits at 160ish now rather than 180ish before).

Cosmetically, still a little swelling in both pecs around the nipple. Also moderate numbness around the nipples and the center of chest. It looks good cosmetically. Somehow my rib flare totally disappeared. It seems like when she lifted my chest, she lifted my abs too. Before, the surgery it was like there was nothing between my lower ribs. No matter how thin I got, how hard I worked, I could never see my ab muscles. Now it's solid. (As a result, though, I have a noticeable belly now cuz it popped out!)

Will go back to work the week after next. Still not totally off the oxy, so need to wait until then.


Question: WHEN can I sneeze. I have a bit of a cold, and it is ROUGH not sneezing, but I'm so terrified to do it! At what point did it start hurting less for you guys?
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[*] posted on 1-17-2016 at 09:58 AM


In regards to the rib flare Dr J shows what she does in one of her video's. They essentially push down really hard on the protruding ribs after the bars are installed.

Apparently, sometimes it works sometimes it doesn't.
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[*] posted on 1-30-2016 at 10:52 PM


Great story! It sounds almost identical to mine. Serious lifter for years, experienced a complete crash and could no longer train. Now I'm almost a year post-op and feeling incredible!
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