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Author: Subject: Male/37/PE/Nuss with Dr. J 7/27/17
stan s
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[*] posted on 7-26-2017 at 06:56 PM
Male/37/PE/Nuss with Dr. J 7/27/17


Subject: Stan's Nuss Journal
Location: USA
Age: 37
Sex: male
Condition: pectus excavatum, Haller ~5
Development: born with it, started appearing around age 9
Intervention: Nuss
Images: Posting before now and after the surgery
Story: It's been a long journey for me. Psychologically debilitating medical condition ever since it started appearing when I was a young kid. All it took was for one person to point a finger and laugh at my chest and that was the last time I took my shirt off in public. I swam in high school with my shirt on. I have always avoided pools and beaches. Everywhere I walk and a little wind blows into my shirt and I think everyone is staring. A single day doesn't go by that I don't think about my deformed chest. The effect was not just psychological. I've always been a very active person. Always involved in sports since I was young. And always behind my peers when it came to endurance. I managed to live through my teens and twenties with limited physical exertion playing various high endurance sports like hockey and basketball. As I entered my 30s things started to get worse. I was getting winded going up a couple of flights of stairs and when I was out on the ice playing hockey within 15-20seconds I would hit a wall where I just couldn't catch a breath and almost have a panic attack every shift. My friends and family started to get worried about me because they would notice that I was getting worse. This is when I decided to start researching about the Nuss procedure and found out about Dr J through this forum about a year ago.
A little side story about me, in my mid twenties I was researching non invasive methods of fixing my pectus. I found out about the vacuum bell and spent a whole summer making one from scratch using silicone molds. So after a few prototypes I made one that actually worked (kind of). I would use it every day for a few hours at a time. The chest would noticeably lift but after a few hours it would go back down to its original position. I have to be honest, though. The temporary lift of my chest gave me a brief moment of elation. I actually thought I looked good for a moment. Unfortunately, it became really tiring to have to use it every day and not really have any permanent results after 6 months of using it. That's when I just kinda gave up hope with that experiment and decided to continue living life with my deformity. At that time I was too scared to have a surgery because I didn't think there was enough long term evidence that it worked. Fast forward roughly 10 years later and here I am about to have surgery with, in my opinion, one of the best doctors I have ever met. As soon as you meet Dr J, you know you are in good hands.
After tomorrow will be a new beginning of life for me. I know recovery will not be easy but I am determined to fight through it. I have an amazing family that will help me through the hard days ahead. I will do my best to keep this thread updated after surgery and through my recovery.

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stan s
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[*] posted on 7-26-2017 at 07:24 PM


A couple of before pics

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[*] posted on 7-28-2017 at 10:42 AM
Before and after pics 1 day post surgery


1 day post surgery

After picture is taken about 18 hours post surgery.
The first day has been quite easy for me. Pain level never exceeded 1-2. The only discomfort was just when taking deep breaths. I've been practicing on the spirometer and getting between 1500-2000. I can't seem to get past 2000 yet but determined to push through it.
I am guessing that once the anesthesia wears off soon the pain will come. I was just taken off of IV and given a bunch of pill pain meds, one of which is oxy.
I am feeling super tired right now and barely keeping my eyes open. I will write more when I have the energy.

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[*] posted on 7-30-2017 at 08:53 PM


Day 1 evening+night

Day one was a breeze. My pain level never went above 2, in fact I couldn't really tell what was difference between 1 and 2. I went to sleep feeling really well and very sleepy. At that point I don't remmember what I kind of drugs I was on. My IV had a shot of some combo drugs that allowed to be administered every 8 minutes with a push of a button. Any more frequently it and it blocks you from overdosing. Reading multiple times in the forum to always stay ahead of the pain I told myself that I would wake myself up every 30 min during the night to push the button. I was even contemplating telling the nurses that I was was at pain level of 6 rather than 3 just to keep me covered. At about 2am I woke up with slight pain, basically some tightness in my chest, probably due to the elastic girdle that keeps my repaired rib flare pushed in at all times. I could notice that the valium I was taking had worn off and I was feeling a bit too self aware. This started causing me an anxiety attack and I called the nurse in immediately. Thankfully I had my mom laying next to me to try to calm me down until the valium kicked in. The rest of the night I slept ok because I had an alarm to wake myself up every 30min to hit the IV drugs.
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[*] posted on 7-30-2017 at 08:57 PM


Day 2

The next day was back to the great feeling of the first day after surgery. Pain was minimal, between 1-2 for most of the day. I got up quite a few times to walk around. I was just slightly dizzy the first time I got up but quickly got used to keeping my balance and went around the hallways pretty fast. I also met a gentleman that day that had the surgery a couple of days before me and he wasn't faring very well. He attributed the pain to someone not letting him take the good stuff (eg oxy) more often. The rest of day 2 was wonderful again, pain level no more than 3. The doctors and nurses were really impressed with my progress. I was able to hit 3500 once on the spirometer but was averaging between 2500 and 3000 for the day.
By the time the second day was over, all the IV had come off, the catheter was off and now I was just given medicine mostly in pill form.
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[*] posted on 7-30-2017 at 08:59 PM


Day 2 night

This was the second time I had a bad experience with the night time. I was feeling fairly fine but I decided to get up for a walk around 3 am. As soon as I got up I started shivering. Teeth was rattling, body shaking, hands shaking. It was really weird because I wasn't even feeling cold. I asked the nurses and they didn't seem to panic. The pain level started creeping up to about a 4 and I attributed the shivering to the pain. Within a few minutes I was given a valium and things calmed down. The rest of the night went well.
The next day I was meeting with a doctor and getting ready to be discharged.
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[*] posted on 8-4-2017 at 09:41 PM


Day 3 through 8

I apologize for not keeping a more consistent journal through my recovery but things have been quite uneventful and I was expecting to get questions from people that I would've been thrilled to answer. I will try to summarize my last few days and maybe update again in a few months.

I slept extremely well in the hospital and it could have very well been due to the combination of medicines that were given to me. Oxy,Morphine,Gaba,Ibuprofen,On-Q have been amazing.

I got released on the third day. Walked myself down to the car without any problems. Pain never went above a 4-5 at any point in my stay, and if it was a 5, it was very brief.

When I arrived to the hotel/airbnb house my family rented I had to get used to sitting down and sleeping on very uncomfortable couch. I had to wake up every 3 hours or so to take medicine so I couldn't really get any rest. There was no way I was sleeping on a bed. I could feel the incision pulling apart as I was trying to lay down. If you can avoid pain, you just do it.

I ate well and walked often. I was out of breath fairly quickly so I didn't try to push too hard. If I moved around too much I started to get lightheaded and dizzy. It was just important for me to move around frequently and in short intervals. I found myself pacing around the house a lot.

I didn't poop until the 6th day or so. I never had any stomach pains. I was having gas from time to time which I thought was normal. I was having feelings like I had to go but there was no way I was going to be pushing crap out. I was getting worried that I'd have to go back to the hospital to get it physically removed but my dad recommended I take something from over the counter. I don't know if that is what did the trick but within a couple of hours i had a normal movement, no constipation, no diarrhea, just as normal as can be. It was a great relief.

Going to back to pain levels, for the next 3 days in the hotel my pain was between 2-4, mostly just feeling uncomfortable tightness in my chest. I asked my family specifically not to say anything funny to make me laugh but I don't think my gf got the point across. All it took was one word from her mouth and it was like knives stabbing me in my chest repeatedly. I'd say that was probably an 8. The hardest part was calming down to catch my breath. Once it passed pain disappeared.

I got discharged from the hospital after my post-op appointment and given permission to go home on the 6th day. I met DR J on that day and I got teary eyed talking to her. There's really no other way to put it than she basically saved my life. I will forever be grateful for what she did for me.

We drove home on the 7th day and the drive was pretty comfortable for me. Again, I attribute this to the combination of drugs. The 7 hour drive was more uncomfortable for my family than me. When I got home I had a very comfortable recliner waiting for me that I just simply don't want to get out of. Sleeping in this thing is incredible. I don't even miss sleeping on my favorite side position.

On a side note, I've improved my inspiration to about 3000-3500 and have gotten it one time to 4000. I am feeling ready to start reducing the hardcore drugs. Stay tuned.
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[*] posted on 8-5-2017 at 01:42 AM


Stan,

I'm glad we are going through this together with our surgeries just a few days apart. I do have to say, I am surprised at you being discharged so early. I know I was told to stay until I can one, manage pain, and two, have a bowel movement haha. I am surprised you didn't have to #2 until six days later! My nurses were concerned at first when I couldn't pass one, but I eventually did on the fourth-day post surgery. It seems you are doing well at home!

Ps. I noticed great changes from your before and after pictures! I hope you are experiencing changes in everyday life as well.

I look forward to your coming updates!

- Tony
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[*] posted on 8-6-2017 at 07:11 AM


Hi Tony,
thanks for the kind words! I agree it's nice to be going through the procedure at the same time. In the past I've read that DR J patients wouldn't be let go until bowel movements but I think they were really surprised at how well I was recovering immediately post surgery so they probably weren't too concerned about it. I am ready to slow down the meds now, especially that hard ones. I will cut off the slow release morphine which I was taking twice a day and reduce the oxy to 5mg every 4 hours instead of the 10mg. Hope you're managing the pain well and getting better by the day. Look forward to hearing more about your progress as the days and weeks go by.

Take care,
Stan
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[*] posted on 8-9-2017 at 08:01 AM


Stan,

Such a beautiful repair!! Reading of your struggles pre-surgery felt all too familiar as it reminded me so much of my own issues. I wasn't able to run anymore. I was out of breath after one flight of stairs and needed to stop, bend over, and catch my breath. It really was dismal. This surgery was the biggest and best gift I ever gave myself. It truly opened a new world for me where I could be physically active and instead of my body holding me back, it is now only my mind. :) You will get there, too! I am so excited for you!! It's also great having someone else who has had surgery around the same time as you...someone to bounce questions off of and be a supportive presence.

Keep up with the updates!




"Man never made any material as resilient as the human spirit."--Bernard Williams
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[*] posted on 8-9-2017 at 12:48 PM


Day 13 post surgery

Hi Halcyon22,
thanks for the kind and encouraging words. Dr. J did really an amazing job with my repair. When I spoke to her at my post-op visit I got teary eyed because she gave me a new chance at life. I felt reborn. I just wish I was 17 and not 37. But I will not complain. I am happy to give myself a chance to live the rest of my life in good health and not feel ashamed of my appearance.

I dropped the morphine a few days ago. I haven't really felt any withdrawal symptoms. I am slowly decreasing the oxy and hope to drop it completely by the end of the week. I don't really feel pain from the surgery at all so I am not sure how much the oxy is really helping. I just don't want to go through withdrawals like others here have mentioned. I am usually a positive person so I don't and can't imagine myself being depressed or feel down when I stop taking it.

I can honestly say the only pain above 4 that I've felt since the surgery has been my girlfriend making me laugh. I don't think she understands how painful it is to laugh/cough/sneeze. It literally feels like being stabbed repeatedly. It hurts so bad my eyes get watery. I think I've said every curse word to her when she does it and she thinks it's funny. I don't want to say it's a pain level of 10 because I don't have a reference point to compare it to but I don't wish it on anybody.

I went back to sleeping on my bed. I am done with the recliner. It is just uncomfortable (not painful) getting in and out of bed. I sleep only on my back and I wake up with lower back pain which sucks but after a few morning stretches it goes away.

I have started walking in the mornings. I bought the brace to keep the rib flare down and that is really the only thing giving me discomfort at the time. I have to wear it for 6 months. It's not only pressing down on my lower ribs but also preventing me from taking a full deep breath. I get winded easily walking. I don't know the cause of it. Is it the medicine, the bars, the brace, the recovery from surgery? I will be looking for signs of improvement in the coming days and weeks.

Overall I am feeling good. I am not mentally and physically ready to return to my desk job. Priority one is to go get off the hard meds first. Then start stretching/yoga and walking daily without feeling lack of energy.
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[*] posted on 8-12-2017 at 01:51 PM


Wow, seems like your whole ordeal has been a walk in the park. Pretty amazing. Was a it a Nuss or hybrid procedure? How many bars?

Leaving on the third day, wow :nw:
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[*] posted on 8-13-2017 at 01:24 AM


16 days post surgery

Hi Fresh, thanks for the comment. It was a straight nuss with 3 bars, picture attached. By the way, side note, I am 6'6" tall so the 3 bars were probably necessary because, one I am tall, and two my pectus started very high on my chest.

As far as oxy I am down to 5mg twice a day and will cut them off completely by the end of the weekend. Gaba,Valium,and Ibuprofen will be on the menu for the next two weeks at least. I have been moving around more often and I feel like I am moving quicker but also it causes me to be tired midway through the day and need to take naps. Again, I don't have pain it's just feels like I am recovering from some sort of energy draining flu more than a major surgery.
I make sure to walk every morning and use an exercise band with varying tension to stretch my arms all the way around. It really helps a lot. I also try to do very light yoga to get my body agile again and get used to breathing better.
What I think I have found very helpful is the custom brace that I bought through Dr J's recommendation (pictures attached). The intention of the brace is to push down on the flared ribs so they get fixed at the same time as my sternum. I believe I have to wear it for 6 months straight, without ever removing it but it's really restricting my breathing so it's a discomfort to live with. I was also told it's not a guarantee that it will fix the flared ribs. BUT one thing I want to point out that is positive about wearing it is that it really helps me getting in and out of bed. The pressure it puts on my chest acts like extra support and almost like a layer of abs if you will. If I had to compare it to something, if you ever weightlift and you wear a belt for squats and deadlifts it gives that same core support. This of course is an indirect benefit of this brace. It's main purpose is to press down on the bottom ribs and hopefully fix the flare.

First I want to give major kudos to the Dr J and her team for the exceptional pain management program. I think they have perfected that aspect of the recovery. I really hope I am not saying that because I am recovering so well or at least better than some of the other people that I have come across here.
I do want to point out that I feel very confident in my preparation before the surgery. I got some tips from here and some patients that I had met with before the surgery who told me that I need to concentrate on cardio and stretching as much as possible before the surgey.
I was doing yoga once a week for 3 months before surgery and I was doing major stretches 3 times a week with tension bands, foam rollers, dead hangs on a pull up bar, etc. I would say I spent at least 15-30 minutes per session stretching and light squatting. I tried to keep my heart rate up at least twice a week playing a sport, tennis in my case.
I truly believe you need to be prepared for something as drastic like this. You can't just be a couch potato or an inactive person and expect to come out of the surgery feeling like you can get up and walk around the next day.

I just want to let people know that I am here to provide as much help for anyone who is considering going through this. If you need encouragement I will provide my phone number just please send me a private message.

I will continue with the updates as I make progress. I won't lie. Some days feel better than others but overall I feel better more often than not and it's noticeably improving.

EDIT: Ugh, I forgot to mention something very important. I was not prepared at all to deal with constipation and that right now is my biggest pain trigger. I was given some meds to help with loosening stools but I haven't been consistent in taking them not thinking this would be an issue. But believe me, this is a real issue. I have taken a couple over the counter meds that have helped me tremendously but the few times that I've forgotten to deal with this I've paid the price in the restroom. :skull:

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[*] posted on 8-15-2017 at 06:15 PM


Yes flared ribs are a pain. I'm also somewhat tall at 6'3" with two failed procedures under my belt (one ravitch, one nuss) and I'm still left with PE and flared ribs :puzz:

I've been trying to get a hybrid with Dr. J. I've consulted with her, had all the pre-op work done and have been denied twice due to insurance not covering me out of network (I'm in MA).
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[*] posted on 8-15-2017 at 10:33 PM


Wow, Fresh, I can't imagine this not working out for someone twice especially how difficult a recovery is following the surgery. Really sorry to hear that. I am curious why the Nuss didn't work out for you? Did the deformity reoccur after bar removal or were the bars not placed right? Sorry I don't know about your story much and I am too lazy to search through the forums in case you've told your story. So, your Nuss wasn't done with Dr. J, right?
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[*] posted on 8-20-2017 at 05:13 AM


Quote: Originally posted by stan s  
Wow, Fresh, I can't imagine this not working out for someone twice especially how difficult a recovery is following the surgery. Really sorry to hear that. I am curious why the Nuss didn't work out for you? Did the deformity reoccur after bar removal or were the bars not placed right? Sorry I don't know about your story much and I am too lazy to search through the forums in case you've told your story. So, your Nuss wasn't done with Dr. J, right?


I had a ravitch when I was 13 years old that was only mildly successful. Then I had a growth spurt. Five years later when I was 18, they attempted a single bar Nuss, which did no good. Realistically, I would have needed some type of hybrid procedure with several bars like yourself. After the ravitch my chest had tons of scar tissue and was/is extremely rigid, so cutting was/is necessary + 2-3 bars since I'm 6'3". My second surgeon failed to recognize this. When I consulted with Dr. J, she commented that the Nuss bar I had placed when I was 18 was probably just pushing against "a concrete wall" of scar tissue and calcification.

Both procedures were in MA. My goal is to have Dr. J perform the hybrid. Insurance has not cooperated twice.
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