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PEctusaurunuss
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[*] posted on 8-18-2015 at 11:32 AM
PEctusaurunuss - Journal


Subject: PEctusaurunuss
Location: San Jose, CA
Age: late 30s
Sex: male
Condition: PE
Development: born with it, but progressed in teens. Haller ~3.7
Intervention: soon to be PEctusaurunussed



CT2a.png - 169kB

PE1 Crop.jpg - 63kBPE3 Crop.jpg - 64kBextra images.jpg - 52kB
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PEctusaurunuss
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[*] posted on 8-18-2015 at 11:32 AM
Day of Consult


So I'm back in CA after my consult with Dr J at Mayo yesterday Mon Aug 17, 2015.

Timeline for those interested was:
initial request for consult - 6/8/2015
reply back from pectus team - 6/23/15
first available consult - 8/17/15
first available surgery date as of 8/17 ~first half of Feb 2016

Consult:
Flew into PHX on relatively warm 114F Sunday day before my appointment. Hotels are much cheaper in the summer here and rates are >2x price in winter high season. I stayed at Westin Kierland Villas, Scottsdale, which has very large, nice rooms.
Checkin 630am Monday at Mayo and finished EKG and exercise VO2 max test before 10am. Spent the next 2 hrs in the cafe killing time.
Consult appointment scheduled for 1pm ran pretty close to on time. I met PA first, who went over my history, symptoms, etc. About 130pm, one of Dr J's surgical team nurses came in and showed me the bars and discussed some of the surgery. Dr J arrived 5-10min later and Kelly then soon after that.
I felt a little overwhelmed with all the people in the room for the consult and it made it a little more difficult to get into a comfort zone and ask all the questions in my head. I wish I could have had 15min 1:1, but I just tried to remember a lot of the questions I had written down b/c I left my notebook at the hotel. They checked how flexible I was by pushing on front/back of each side of my ribcage, which luckily I am extremely flexible in the ribcage with plenty of cartilage. Dr J says I have a mostly symmetrical defect and she thinks I will get a near perfect correction with a min 2 and likely 3 bars. The following is all just her first impressions from visual check and CT scans so it is likely to vary depending on what she finds during surgery. I have some upper indentation on one side that may correct some but might not fully. My rather pronounced rib flare will be pushed/fractured down and she recommends a brace for several months to hold this down to achieve optimal outcome. They also stressed getting the core in tip-top shape will help hold down these flaring areas post surgery. My xyphoid points back out currently and will be fractured to push it back down flat and the lowest bar will likely run directly under it and be fiberwired to it to keep both the xyphoid down and the bar from flipping on such a low insertion. I lift and crossfit quite a bit so I have developed a significantly wide chest and muscle mass so she thinks 3 bars will be safest to handle the extra downward forces I will end up putting on the correction. The bars are surprisingly easy to bend by hand!
We discussed all the drugs currently being prescribed and the Pros/Cons for epidural vs. OnQ. My echo was normal and the VO2 max wasn't showing major issues but they only had preliminary results that a cardiologist hadn't reviewed yet. After Kelly gave me some research and pamphlets, my consult was basically over and it flew by. I was then sent upstairs for photography after signing releases and from there I went to a research consultant and gave my consent to use my medical history for a Mayo funded research on PE repair. I was told I am about 475ish out of 500 patients for the research.

As far as insurance, they do not think approval will be a problem but won't know for sure until Oct/Nov timeframe when they request it.
Now I am in hurry up and wait until Feb mode. I won't find out an exact date in Feb for another 2 months. Until then my job is to focus on core fitness and mobility/flexibility.

Please excuse any grammatical and spelling errors as I didn't have time to review this fully.
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Halcyon22
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[*] posted on 8-18-2015 at 12:27 PM


What a busy, but exciting day!! I bet it felt good :) what an honor too to be part of medical history by being a part of the PE repair research!

I remember how tough it was to wait, but the months will fly by for sure. Being in good shape will ease your recovery so it's a good thing to focus on that while you wait for surgery. :cool: so excited for you!!




"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 8-19-2015 at 06:01 AM


Hi, I was in the same situation months ago. Right now I'm in Arizona and today is my preop testing, surgery tomorrow. It's actually cooler this week so I guess I'm lucky - around 104 208. I remember when I was in your situation also waiting to get The surgery date. It was back in January of this year - had to have all my testing and waited a month to get the surgery date which was in early August. The wait was worth it! Back then was six months out.

I'm also one of the research participants. So glad to be part of it so we can help others and provide more information for them about this condition.

After blood draw I will have a one-on-one consult with Dr. J and I also had some questions that I forgot to ask during the initial consult. So this is now or never to ask and clear my mind before the surgery.

PEctusaurunuss - time flies really fast so the wait actually is not that long. February will be here very soon.
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PEctusaurunuss
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[*] posted on 11-24-2015 at 03:43 PM


A little over 3mo waiting for a date and now I finally know it. I will be second case on Thurs Jan 21st after which I will officially be changing my name to PEctusaurunuss'd. Relieved to just have a solid date to look forward to now.

Anyone else schedule around that week or the following please get in touch.
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[*] posted on 12-17-2015 at 11:32 AM


Surgery was pre-approved this week so I am a go for 1/21. Flights booked and scored a rental house for the week a few miles from Mayo that has a big recliner (airbnb house was cheaper than hotel). MLOA is also now booked with my employer so I am ready to go.

I am now trying to find all the pre-op recommended checklist items people have in their journals to get it all in one file. For those who have had Nuss, please give me any recommendations you have. I also started looking at a recliner or zero-g chair to rent/buy for coming home.

Anxious and nervous starting to set in a bit.

If anyone is looking at insurance options and can get Cigna HDHP through their employer then I will tell you the approval was pretty easy through them.
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[*] posted on 12-17-2015 at 05:47 PM


Good luck with it all, keep us posted!



22 | Male | Australian living abroad | Nussed one bar Mar-12 | Bar Removed Jan-15 | Waiting for a Re-Do
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PEctusaurunuss
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[*] posted on 1-7-2016 at 12:37 PM


2 weeks exactly and the nervousness is starting to set in. I have cut back on the weights tremendously and down to 3 sets of lighter weights for 10x reps per each body part. I plan to transition this to zero weights over the weekend days but ramping up muscle release. A lacrosse ball against the wall and foam roller will take the place of weights. I am also doing romwod daily.
what am I forgetting?
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[*] posted on 1-9-2016 at 01:33 PM


Keep up the exercise til about 1-2 days before surgery and then allow yourself to rest. Looks like you are set and now it's just a waiting game! Were you able to find preop tips and combine them together? If so it would be a great thing to share with others who are just starting their preop journey!



"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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PEctusaurunuss
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[*] posted on 1-20-2016 at 08:00 PM


Here we go. Tomorrow bright and early. Not excited to hear 3 bars is very possible due to detect shape but gotta trust Dr. J. Thanks to everyone who posts on the boards. I never would have gotten to this point without your contributions.
And whoever else is getting repaired at Mayo over the next few days drop me a note... I know there are a couple out there.

See you all on the other side.
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[*] posted on 1-21-2016 at 02:00 PM


Good luck and you are going to do great tomorrow! Private message me your first and last name and I'll see Kelly and Dr. J tomorrow and come visit you!! Praying for a great surgery and speedy recovery for you. :nw::)
Jackie




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[*] posted on 1-21-2016 at 07:21 PM


Hope all went well for you!!!!



"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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PEctusaurunuss
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[*] posted on 1-22-2016 at 07:48 AM



Thanks Halcyon22:)


Day 1
Doing pretty well. This will be short due to all the drugs. 3 bars and sitting up now which feels good.
Thanks everyone!

PEctusauranussed!!! :D:D:D
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[*] posted on 1-22-2016 at 12:07 PM


I'm glad you did so well and keep up the good work. Walking will be a challenge but I know you will push through it. You are now in the 3 bar club and congratulations on a great surgery.:):nw:



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PEctusaurunuss
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[*] posted on 1-22-2016 at 07:11 PM


Catheter is out but no Shi Shi yet. I got 4hours still to make it. Pain control has been very good except one instance while on a walk . Pain shot up to about 7.5 very quickly . Took some extra fast relief Oxy and got it under control quickly . Got in 11laps today. Staff has been great especially Elaine on the day shift. My repair was very symmetrical as you can see from the X-Ray.
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[*] posted on 1-23-2016 at 09:47 AM


All that walking will be a huge benefit to you :) Have you taken a good look at your chest? I remember that first look at my new chest--how unforgettable!



"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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PEctusaurunuss
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[*] posted on 1-23-2016 at 04:02 PM


Day 2 Has been a lot more difficult . Had the catheter out yesterday but then had to have it redone three times because I couldn't go and was filling up my bladder. Fast acting oxycodone really affects me badly I don't like it at all and tried to switch to a different narcotic but so far no luck finding a good one . Day two also as me expelling a lot more fluid from my chest drain and the chest train hurts quite a bit . All in all not very happy with the progress today wish me luck for tomorrow .
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[*] posted on 1-24-2016 at 09:59 AM


Good Luck Today!

Just remember your in good hands with Mayo, they have seen it all and will do whats best for you. Expect rough days for a couple weeks. Just got to go day by day and hope they pass quickly.
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[*] posted on 1-27-2016 at 09:41 PM


Hope you're doing alright PEctusaurunuss! Or should I say PEctusaurnuss'd! If I may ask, were you having physical symptoms prior to surgery? My CT looks very similar to yours (and yet your pre-nuss chest looks much better/flatter than mine), and I do have symptoms but my Haller is hovering somewhere around a 3. I know the Haller index has its flaws though, and it's possible to be symptomatic while under 3.2 and asymptomatic while over. If you were symptomatic, do you recall what age you began to notice it?
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[*] posted on 1-29-2016 at 02:36 PM


Apologies for the gap in my journal for the last few days. I have been a little better at filling in the days at pectus.com where it is easier to post pictures . Now that I am at home I will try to get everything on my regular PC and complete the journal for all the missing days and get everything current . Just need a day or two to adjust back to recovering at home since I just got back last night . Promise I will answer your questions in particular , Mikey .

Attached is my wife's little drug tracker spreadsheet she created to track all the fun meds you get. so far for me ibuprofen is the worst one to forget once you are past a couple of weeks.
http://1drv.ms/1SMtxe9
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[*] posted on 2-11-2016 at 08:25 PM


Re: MikeyB,
I would say I was asymptomatic in that I did well in power/weight lifting and other more non-aerobic sports. I shied away from team sports which were aerobic when I was young (football, soccer, etc).
I tried rugby and crossfit in my 30s and it hit me how subpar my aerobic capacity was vs. people w/out PE.
I was in my late thirties when I did start to get more pain in the chest/collar bones and lower sternum (deepest pt), aerobic capacity went down more (even though I was working pretty hard), and I began to notice heart more heart related phenomena. I had a couple of incidences where I fainted, odd heart arrhythmias, heart skipped a beat, etc.
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[*] posted on 2-12-2016 at 07:52 AM


I wanted to have one location in my journal for all the little tips/tricks/items that helped me along the way. This will condense a lot of the "good to know items" I have learned/gathered into an easy to find format for others. I think people have requested some sticky or other gathering of info into a single place before so I wanted to start that. Whether it is advice from others or from my own personal experience, I will include it here. This post/file will continually be updated separately and I welcome other tips from anyone via private message to add in (with credit given as due to sender) I really hope to get some good stuff here from all the post Nuss patients. A second volume for workout recovery tips during the bars in place phase (although you can't beat Godswill's Journal for a very detailed tracker of all that) and finally tips/tricks volume 3 for bar removal.

General Questions with My Recommendations, Good to Know Items, and Trick & Tips is the basic format I used to break up the info into relevant topics.

I had to attach it as a file because copy/paste of txt is broken.



Last updated 2/13/16



Attachment: Nuss Recommendations for The Surgery and early recovery - Volume1.docx (20kB)
This file has been downloaded 119 times

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[*] posted on 2-12-2016 at 02:53 PM


All great info, thanks man!
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[*] posted on 4-6-2016 at 02:52 PM


Update at week 10/11.
I am stuck trying to convince myself that I am not sinking/regressing. I hope I am not sinking and it is only swelling going down. I was really afraid to be undercorrected going in but I think that I am undercorrected. I had hoped to err on the side of over correcting. I have some dip the size of a small bread plate in the center about 1cm in depth so probably 85-90% corrected with bars in at week 11. The whole area is somewhat flat - no rounded shape to it like a normal chest. It still looks much better than before just not quite all it could have been.

I will be really bummed if I regress any from here on as I think 85-90% correction is my best scenario going forward, which would still be pretty good. Not perfect, but I'll take it. I think that rib flare reduction will help the appearance when the bars come out. I gave up on bracing as the soft brace didn't appear to be forcing the flares back down once they had popped back up post surgery.

You can see it best with arms raised so here is an album showing pre surgery (2 pics), week 2 (middle one pic it appears flatter - due to swelling?), today (last 2 pics).
https://onedrive.live.com/redir?resid=60A4B75865955281!290&a...


Feeling very out of shape and have lost 20lbs. Stretching and doing stationary bike daily with very very light weights still as my post surgical xray hasn't been cleared. I can see the larger flat area and slight dip of bottom part of sternum in the xray at 8 weeks.
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[*] posted on 4-6-2016 at 10:25 PM


Hi Pect.

Well done for getting this far. You're doing great.

The mind plays vicious tricks on us PE people. The number of times I looked in the mirror and 'saw' my dent (or at least part of it) I lose count. Of course it wasn't really there.

Your pictures look fine to me. Are they before & after or all after?




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