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Author: Subject: Male/35/PE/Nuss with Dr. Losasso
thehesiod
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[*] posted on 4-18-2014 at 01:22 AM
Male/35/PE/Nuss with Dr. Losasso


Subject: Alex's Nuss Journal
Location: USA, San Jose
Age: 35
Sex: male
Condition: pectus excavatum, Haller 8.3
Development: born with it
Intervention: Nuss (single bar, one stabilizer left side secured with metal wire, right side secured with PDS cord to rib)
Images: Will post soon
Story: I researched the various ways to fix PE for several years but it wasn't until I read the stories from this site in sufficient numbers that I decided to go forward with the Nuss procedure. Since I was located in California my research led me to Dr. Losasso. I had my initial visit in January 2014 I was Nuss'd on 4/4 of this year.

After my initial visit, Dr. Losasso's office was able to set me up with a multitude of exams on the same day of my second visit (since I lived quite a distance away, pulmonary, cardio, and MRI). Interestingly pulminary came back normal, cardio came back with typical issues due to pectus, and MRI with a Haller of 8.3. As described by other members, Dr. Losasso was very calm and described the cause and corrective procedure in detail. My main worries were infection and nerve damage to which he addressed. I did not feel rushed or put down in any way which was really nice compared to a lot of other doctors I've met in my life. His staff is also very courteous and nice working with.

Based on my encounters with Dr. Losasso, his staff, his experience, pain team, support from wife, parents (for crashing at location closer to Dr. Losasso during recovery) and my Haller I decided to go forward with the surgery.

Dr. Losasso initially wanted me to be the first patient performed at the Sharp adult facilities but at the end decided to go ahead at Hospital in San Diego. IIRC the decision was based on the fact that my Haller was greater than initially thought and since he wasn't sure I'd need one or two bars he felt safer doing the surgery at the hospital (fine with me! :)

I checked in on the morning of 4/4, you're asked to fill out some forms, including one of which asks if you wouldn't mind being visited by a support dog (which was really nice!).

I was then ushered into a waiting area where you're asked a multitude of pre-surgery questions. You're then introduced to the anesthesiologist and the fun starts! :) You're taken directly into the surgery room and given an iv to get you into a semi twilight zone before inserting the epidural. After a slight issue with my fight/flight response to the first IV (nearly fainting) I remember positioning myself for the epi, and then just being pretty cold and being wheeled to the recovery room where my wife was waiting. My wife said while being wheeled into the room I kept asking if I needed one or two bars (consciously I think I was trying to avoid thinking about that, but it appears subconsciously I was worried!). Unfortunately I don't remember that conversation at all, which in of itself became a conversation item :)

Luckily I only needed one bar, to which Dr. Losasso said it snapped right into place.

The first day and night of recovery wasn't too bad, sleeping was difficult though since every two hours they rotate you to not get sores, and the machines are constantly beeping. One tip: when you sleep your breath rate goes down and with the bars in place your oxygen level can go below recommended levels so opt for a oxygen tube to avoid that machine constantly beeping when you start sleeping (almost training you to not sleep, lol). Over the whole day/night I would say I had level 2-4 pain. I only had pain on my right side, which did NOT have the stabilizer. The Dr. found this rather interesting however based on my pain levels he said the epi was working wonderfully (yay). The worst part of the first day, and a constant across the process was pain caused by the catheter. I think I may have had a bad experience because going in I was dealing with prostatitis. The worst part for me was when emptying the tube I would get this deep pain like a constant 2-3, luckily changing position of the bag seemed to help. The pain seems to have been worth it since my prostatitis seems to have been cured after my hospital stay! :)

The second night I had a big issue, at one moment at night my chest pain went to a 9. On my scale this meant my body was stiff, I was taking shallow breaths, and was repeating OMG several times, even crying a bit at the end for the first time due to pain. Within a few minutes the nurses came and IIRC they gave me morphine (which actually burned a bit going down my vein and a little on one eye) and rotated me (which I think actually resolved the issue). I think what happened is that for whatever reason my body position was causing the epidural to not distribute correctly yielding this pain radiating across my chest. (interesting fact, they stated that the epi did not stop because if there is an increase in pressure the machine will beep). IIRC it felt like I was being operated on at that moment. Within ~20 minutes I was back to my old 2-3 level of pain, yay!

The rest of the days I was mostly 0-3 and this was always on the right side and/or catheter discomfort. I remember also that my right arm tended to be colder than my left arm along when I had pain. I only had one other moment of getting to an 8-9 and this was caused my me not knowing that according to Dr. Losasso, you should not wait when you feel pain coming. If you feel a wave of pain coming you should immediately notify the nurse because apparently pain can jump very quickly from a 5 to a 9. After it got pretty bad I started insisting for pain meds and after I believe either Valium/IV motrin my pain level went back to 0-3.

Now for the good parts of being in the hospital :) I have to say the staff there are really awesome. They're very caring and and wonderful to talk to. They're willing to answer your questions about what's going on and some small talk about what's going on in the world, etc, making you feel human. They also do realize how hard it is for you there and really try to disturb you as little as possible. My mom said one night one of the nurses was waiting behind the curtain for the machine to beep so she could replace the IV bag in as little time as possible so you could get some sleep. I would definitely call them all good friends. They really did seem to go above and beyond. Also I have to say I was happy with the food from the hospital! However the chicken sandwich was much better than the salmon.

I think on the second day I was already walking around. Overall they seemed impressed with how quickly I was recovering, they said people usually didn't walk so much so quickly. I didn't feel any nausea which was great, however I tried not to eat too much because I know all the meds cause constipation. In fact, even with this and the anti constipation meds I still needed to down half a bottle of magnesium citrate to clean the system on the 6th day (which Dr. Losasso said was like taking a colon bomb, lol).

My parents and I stayed for a couple of days at the local Extended Stay so we could go for a 7 day check-up with Dr. Losasso. We did a quick visit at hospital and Dr. stated that everything looked well and would see me at the 2 week check-up!

So I'm currently 14 days post surgery. Next week I'll be going for my 2 week check-up. I was given the standard of Oxycontin (15mg), percocet (5/325), ibuprofen (600mg), Valium (2mg) for break-through pain, and ducosate sodium + senna 50/8.6 mg for constipation, and 10mg zofran for nausea (didn't seem to really work).

I believe I was originally taking two percocet pills every four hours, and after about a few days I was down to 1. This combo was giving my stomach pains and causing nausea so I decided to cut meds as fast as possible. I occasionally took Valium, this second week I dropped Oxycontin. The other bad part of the meds is that it pretty much means you can only sleep for 4 hours at a time, and between these times you have to eat something...this really screws up with your schedule.

right now i have maybe occasionally ~0-1 discomfort in chest area, but my back on the right side is really bothering me. It seems to flare up when standing up. I'm using hot pads to calm the muscles back down effectively. I'll call the Dr. tomorrow to see if this is normal.

I've been walking every day without issue. Today I actually did a trip with my parents to costco and didn't have any issues either. I noticed I tended to hold my arms crossed across my chest to avoid sudden movements in that area but wasn't really uncomfortable.

With the breath tool I can now pretty consistently hit the peak at 2500ml. So I think the lungs are in good shape.

Overall so far I can say I'm pretty happy with the rate of recovery minus the back discomfort. If I didn't have that I'd say it was almost a miraculous rate :) I wouldn't say I'm walking normally because things definitely don't feel normal yet, however I can feel things getting more normal as time goes on. I think what helped too was doing some very light yard work VERY cautiously. It seemed to help mentally and physically.

In terms of the physical appearance post correction I think I may be skewed based on always having pectus. To me it seems like there's still an indentation, I would say like maybe 15% of what it used to be, however I have no idea what's normal :) I'll have to investigate more photos of other users. Also after I post my photos please feel free to comment!

As a closing note for this post (I'll be keeping updates), I'd say that you really need to be committed to doing this because it'll make the recovery a lot easier. Mind holes like feeling pain and thinking it won't come out for 3 years can be wearisome, so you need to stay positive and have a good support system.

p.s. If you're visiting Encinitas a nice garden to visit is the Encinitas Hermitage, Retreat & Gardens: https://members.yogananda-srf.org/CenterSearch/SRFGroupDetai...
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[*] posted on 4-18-2014 at 02:12 AM
Pre Nuss




Pectus2 (Small).jpg - 63kBIMG_20140418_014229 (Small).JPG - 35kBPectus1 (Small).jpg - 68kB




Pectus Excavatum Nuss'd by Dr. Losasso on 4/4/2014
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[*] posted on 4-18-2014 at 02:12 AM
Post Nuss




IMG_20140418_013842 (Small).JPG - 52kB IMG_20140418_013919 (Small).JPG - 54kB




Pectus Excavatum Nuss'd by Dr. Losasso on 4/4/2014
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[*] posted on 4-18-2014 at 08:53 PM


Hey - Wow, what a killer journey. You picked a very well respected surgeon. He does great work, as you can see on you.

very impressive.

Randy
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[*] posted on 4-18-2014 at 09:03 PM


Congratulations! Thank you for sharing. I was just Nussed by Dr. LoSasso six months ago. Sounds like you're doing great with the incentive spirometer. Keep up the good work. You look great. :)
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[*] posted on 4-19-2014 at 09:05 AM


Thanks for the kind words guys, it really helps! I'm going to try helping others as soon as I'm a little further in my journey.



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[*] posted on 4-24-2014 at 11:21 PM


3 week update

I did the two week check-up where they removed the bandages (yay), everything went well and again the staff and Dr. were really nice. I gave a suggestion for future patients to let them have the 12 hr extended release percocet to help them sleep through the night, they said they'd look into it. So hopefully a future patient can benefit from this. I also discussed some of the procedures I read Dr. J performed on patients that weren't able to achieve 100% results with just the bar by Dr. L was not aware of the procedures she did for one of the members here. Dr. L seemed to be pragmatic about the results (which I don't disagree with) and got me back to focus on the functional results and that it really doesn't look bad (I'm sure its not uncommon though for patients striving for perfection *g*). Doesn't help that I'm so skinny now though. Speaking of which I think I've lost even more weight, I think I'm down to ~155, coming into the surgery at 165. Its really difficult with medication that ruins your appetite, the lack of ability to use all your muscles like you did before, and the psychological factors on top of that. I'm sure as time goes by things will improve. I was also told at my 2 week update that the back pain is common and I'd have to find the triggers and ways to relieve it since each surgery is unique.

I'm almost off all the medications. The worst part in the beginning was trying to sleep, so currently I'll take a percocet and maybe an ibuprofin before sleeping to relieve general pain but mostly a burning sensation around the bar area. I'm still sleeping on a big comfy leather recliner of my parents because it seems on the bed I get too much tension around the bar area on the right side (non stabilizer). In fact using its really hard finding a position where this isn't an issue.

I had two new symptoms start up today: 1) the top layer of the skin on my left thumb is peeling off with fresh+sensitive skin underneath (weird), and 2) upper left respiratory pain (about two inches above the bar) on deep breaths. I contacted the office and they said they'd call me back tomorrow the discuss it. I noticed today that using the breath machine seemed to help lessen the chest pain, however because of the pain I'm down to 2000-2250ml. Based on my reading in these forums I'm just hoping its not something like the chest sticking to the scar tissue forming around the bar or anything else serious.

I've also noticed that the areas around my scars are starting to itch quite a bit, I'm guessing normal based on previous experience with scars :)




Pectus Excavatum Nuss'd by Dr. Losasso on 4/4/2014
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[*] posted on 4-25-2014 at 08:49 PM


thehesiod <~~ What's that?

Let me reassure you that all the weird crazy makes no sense things you are experiencing are somewhat normal for this procedure.

Im not to keen on learning your nearly off pain med's at 2 weeks post. Not a wise path in my opinion. Unless you are 1/100,000 who simply has nearly no pain post nuss. Just my thought.

Finding a comfortable position to sleep, walk, shower, talk, eat........ is alway challenging, there is no answer other than grin and bear it. I will be gone soon.

The med's kill your appetite causing weight and hair loss, both stink! Again, allow time for your body to fix it's self.

I can suggest a difficult task for you at 2 weeks post. Begin walking 30min 2x/day, morning and evening. Just go slow and listen to your body, it will give you any answer if your tuned in. Never go crazy on recovery but never go at it like a turtle.

The walks force breathing, blood flow, muscle movement and bowl movement <<~~~ Yip.......
Walks will also make you tired, this is great, for being tired from exercise will help you sleep better to some degree.

Oh yah, that left thumb skin issue is just another weird benefit of a major surgery. No worries, it will fix it's self in a few days.

That upper chest pain..... this is a long shot....it very well could be some air remnants from the surgery. I only say this for I had air remnants near my collar bones. On deep breaths the pain was just lovely!! This diminished after 3-4 weeks, the body grabbed the air and removed it. Again, the body fixed it's self.

so that is all I have to say, keep your fight going and post again.

Randy
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[*] posted on 4-25-2014 at 11:37 PM


hesiod: http://en.wikipedia.org/wiki/Hesiod

basically a cool name I chose as my username during the BBS days :)

so ya I think I did have less pain than most initially as I was able to cut the oxycontin after a few days. Right now (week three) I seem to only need the occasional percocet and/or ibuprofen. I notice I need it when going to sleep and/or during the day now when I get sternal pain. I would guess I would not feel any pain if I were consistently taking 1 percocet and the 600mg ibuprofen but I can't sleep taking percocet every 4 hours and if I take both I have reduced appetite, so I've been taking them basically if I feel uncomfortable, which is like twice a day now it seems.

The weirdness starting now that the non stabilizer side is moving around a bit (which I can feel against my rib) depending on how I move, normal I'm guessing.

Thanks for all the reassurances, it really helps! The nurse was really nice and called back today and confirmed what I had discovered these last couple days: to keep using the spirometer (upper chest pain is now gone, yay). I guess just had to power through the pain.

The finger thing is weird, that's for sure! I hope others can see this and not freak out, that's mainly why I'm detailing all the nuances I'm experiencing.

I've been doing the walks and they definitely help, yesterday we did a several hour trip to Knott's with the nephew and niece (I just walked around) and I could tell at the end that it was too much...but actually today I feel much better than before the trip, so maybe not. Its mentally so hard not picking up the little buggers! :)

Have a good weekend!




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[*] posted on 4-26-2014 at 07:35 PM


I had a weird thing where my skin started peeling terribly from my neck down until around my elbows... then I broke out on my chest... in all resolved in a few months time. I figured it was healing/detoxing/etc. from the surgery and the medication. Randy is full of good advice!
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[*] posted on 4-29-2014 at 01:59 PM


these last few days I've been plagued by diarrhea so even more weight loss:( Not sure what caused it. I'm also a little concerned about my non stabilizer side (right). From what I was told this side should be the most comfortable, however since my surgery it has always bothered me the most. I notice that there's a noticeable hump on that side, and that the skin is much more sensitive on that side. Also this side is the one I can occasionally feel movement from while moving. Did you guys notice anything similar? I read a bit about adults should have shorter bars, I'm wondering if the bar was perhaps a wee bit long?

Still not sleeping 100%. Taking ibuprofen at night before sleep. I had some kidney area pain so I've increased water intake and its seems to have helped.

The other weird feeling so when laying at an angle it almost feels like the bar is cutting into me internally so it gets uncomfortable pretty quickly.




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[*] posted on 4-29-2014 at 05:25 PM


I got C diff after one of my surgeries. It caused a lot of diarrhea. I wonder if that is what it is.



Modified ravitch with permanent titanium plates (on top of sternum).
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Before http://imgur.com/a/ZfqYA
After: http://imgur.com/a/QXyWN
My journal: http://www.pectusinfo.com/board/viewthread.php?tid=10194
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[*] posted on 4-29-2014 at 07:55 PM


thehesiod I am somehow jealous of you, I barely can sleep and my operation was 30 days ago, I feel a lot of pressure on the metal bar and a lot of pain on the right side of my chest where the stabilizer is and I am back on full pills now since I cant bear the pain, the only place I can sleep is the chair and not a lot of hours aswell I usually able to sleep after my morning pill dosage and that's around 10 am I fall a sleep.
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[*] posted on 4-29-2014 at 08:04 PM


my right side where no stabilizer has a bump as well btw its the most comfort side aswell feels like nothing there but the right side uhhh.... feel like its breaking me in half sometimes.
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[*] posted on 4-29-2014 at 10:12 PM


well I'm not really sleeping either. The my stomach is all messed up all night, and I was having pain around a kidney area. And the areas around the bar ends are very tender, so too much pressure for too long hurts. Plus my back aches randomly. It doesn't help that my nephew and niece (1.5 + 4) are visiting either :) Probably over the 2 weeks @ home I've had a total of ~12 hrs of sleep.

The issues aren't enough for pain meds but are enough to prevent a good night's rest.

The most pronounced now is that I have like a burning pain about an inch above the bar on the left side, I'm wondering if its stomach acid, i dunno. It may be due to stomach recovering from the meds. So things are still pretty screwed up.

Thanks for the replies...btw, I couldn't quite follow your last post TorekO as you stated different things for the same side, might want to edit?




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[*] posted on 4-30-2014 at 01:23 AM


http://www.pectusinfo.com/board/viewthread.php?tid=10985

here is my post, the left side I have no stabilizer and it feels really fine I have no problem there, I do feel sometimes the bar there but usually at the end of my meds running out but my right side where the stabilizer is feels like it breaks my bones in half sometimes and I have the burning pain above my right side bar under the nipple and at the side of the chest too, I have pressure aswell and I guess I had more sleep then u , I thought based on your post u could sleep every day but seems like I was wrong sorry hope you get a better sleep. My sleep is usually I wake up 6 times a day and each time i fall a sleep is for a hour or half hour sometimes 2 hours but before a week ago I could sleep for 6 hours and 6 hours straight again, this only started since my right side started to feel pain which I think is because my chest expanded and more in natural state now then before.
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[*] posted on 4-30-2014 at 01:24 AM


Glad to have a fellow person that did procedure at the same time as me btw ^^
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[*] posted on 5-12-2014 at 05:22 PM
5.2 week update :)


So I think the skin burning is starting to subside. I think this was due to a combination of the plastic patch used around the incision sites which made my skin raw after removing, and the nerves being frazzled due to the surgery (stretched nerves).

Its getting easier to sleep without meds..the last couple of days I haven't taken anything (yay!). I still feel pretty tense and uncomfortable, however the actual pain is pretty low as long as I'm careful. The one really annoying thing is this upper left chest pain that comes and goes away. Its kinda like a deep burning/raw sensation thats unaffected by breathing. If I didn't have this I would actually be feeling pretty darn good. Actually a new one to start is lower right cramping while walking (constant for 2 days now), unsure if this is related to the surgery though.

I'm doing the walks regularly however I'm still 10 pounds below what I went into surgery with. I'm still a little worried if my bar had rotated since the outcome seems worse than the picture right after surgery. I'm going to ask Dr. Losasso if they could do an xray @ my 3 month check-up instead of 1 year check-up.

I've had a small hole on one of my incisions that still hasn't closed completely. It has a small amount of puss noticeable if I add a band-aid with Neosporin. Otherwise it just looks like a small scar. Besides this I've started using Scar-Away + silicon patches on top. Hopefully the redness will diminish w/in the next few weeks.

I've also scheduled an appt for physical therapy, so hopefully soon that will help me further on my journey.

overall I'm still at the point where it seems like a LOT of pain/discomfort to fix the problem. I REALLY hope in the future they have a better way because this is a lot of stress to put someone through.

oh, and sneezing doesn't seem to be TOO bad, which kinda worries me since its supposed to hurt a lot, weird eh?

one more thing I just remembered, the skin peeling has stopped but my thumb still feels very sensitive, like the nerves are hyper.




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[*] posted on 5-12-2014 at 07:59 PM


Thehesoid

Just hang on, more weirdness is coming your way again and soon. Sorry, It just is gonna happen. In a short time you will notice that Mr. Weirdness still pays you a visit but they will be fewer and longer between. Eventually he wont come around your place any more. The main reason you dont have weirdness all the time is because Mr. Weirdness is like Santa Claus, he has a lot of stops to make for those post surgery. <~~~ like that ??

Ok, get your walk and get your sleep. All will be good soon!

Randy
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[*] posted on 5-13-2014 at 01:13 PM


Thanks Randy! Holy Hell, just had the painful kind of sneezes...oww



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[*] posted on 6-1-2014 at 02:00 PM
8 week update


Things have been progressing well.

- My thumb which had the skin peeling almost feels normal now...still slightly more sensitive than other thumb

- I haven't lost any more weight, however I haven't gained any either. Digestion is still pretty weird (although before surgery it was weird too *g*) Still 10lbs below pre-surgery.

- I can now get in/out of my car pretty easily (have a slightly lowered A4 making it more difficult than normal), but definitely still notice the tightness.

- During the day sitting on my chair at work after extended time I get soreness around the two bar ends.

- redness and inflammation around scars are slowly diminishing. I've been using ScarAway under silicon sheets off and on for the last couple weeks.

- the skin over the stabilizer seems stuck to the stabilizer. I'm guessing because i'm so skinny. Hopefully that loosens because I have a feeling its causing some of the discomfort

- I've been now to two sessions of physical therapy. Seems to be helping. A neat exercise is the cat/camel pose. In the cat position you can feel the tightness across the bar, and it seems to help loosing it up.

- I've notice that on the non-stabilizer side the rib flare seems a lot better than on the stabilizer side. The stabilizer side in fact has been a lot more bothersome now than the non-stabilizer.

- still occasionally having upper left chest pain which requires a hot pad to resolve. It feels like the left side of the upper sternum is higher than the right, I'm wondering if its slightly rotated causing the occasional pain now.

- I'm not sure but it think my chest indentation has sunk back ~1-2 mm :( I'm worried that the bar either slightly migrated or rotated up after surgery. I have to say its pretty disheartening looking down and seeing still a hole, albeit a smaller one after everything you go through.

- definitely still not feeling like my old self. Still sleeping on back because sides are too uncomfortable (dying to sleep on side as I'm a side sleeper *g*). Everything is still tight/sore around bar area.

- lots of sneezing, oww! But getting (slightly) better :)

- bills have started arriving, out of pocket ~3k so far. Total to insurance is > 100k! dang :)


IMG_20140601_140308 (Small).jpg - 64kB IMG_20140601_140827 (Small).jpg - 61kB




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[*] posted on 7-1-2014 at 02:25 PM
3 month update


- stabilizer side is still really sore and preventing me from sleeping on my side. Also makes breathing uncomfortable. I'll be discussing about removing it if things don't get better in the next month.

- have gained 2 pounds back, yay

- upper chest pain is now almost completely gone...however I noticed the bones on that side are higher for some reason...unsure if it was like that before.

- still have some back discomfort

- would really like to see if my scoliosis got better/worse after getting an xray post Nuss. Unfortunately Dr. Losasso doesn't typically order xrays post nuss until 1 year post surgery.

- skin seems to have loosened somewhat below stabilizer.

- finished physical therapy awhile ago and good range of motion

- appetite/digestion seems to be back to normal, or perhaps even a little better than pre-surgery.

- still a little conscious about the dent that was left and stabilizer side rib flare. I did see and old pic though and started feeling a little better about the results :)

10-4-2008 121 (Custom).jpg - 235kB




Pectus Excavatum Nuss'd by Dr. Losasso on 4/4/2014
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GodsWill
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[*] posted on 7-2-2014 at 06:03 AM


A couple things...

First,

CONGRATS!!! Pic is great, BTW :) Very happy :)

Second,

EAT...MORE...FOOD. Seriously.

Third,

Workout. Put on some muscle. That will help fill out and pull things out. Do cardio to let the lungs fill up and do core to help stabilize and help posture.
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[*] posted on 7-20-2014 at 11:11 PM


How is sneezing after 3 months? That's about all I'll have after surgery, before my seasonal allergies kick in.

Are you sleeping on your side now?
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pectuscoordator
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[*] posted on 7-21-2014 at 01:53 PM


How is everything going with you now? Have you taken everyone's advice and "carbed" up to gain weight and also done an exercise program? There is an exercise video you may like to watch on youtube under the Phoenix Pectus Surgeons channel. You can follow along and even do the after 2 month postop exercise program now!
Good luck and keep us posted. :nw::nw:
Jackie




Wealth is the ability to change other people's lives.
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