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C123 replied to the topic 'Can't afford recliner, best sleeping aids post-Nuss?' in the forum. 12 hours 35 minutes ago

I was sleeping on the sofa with a lot of pillows. It wasn't too bad. The only problem was getting up after sleeping. Many of the pillows slipped while I was sleeping and I couldn't really get up from laying flat for a couple of weeks. That led to some painful moments but it was bearable.

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jonesy replied to the topic 'sleep apnea' in the forum. 2 days ago

I am 37 yr old female. Tall and slender with PE . My HI is 3.8. I have always snored and had trouble sleeping and I recently had a new sleep study that showed I have mild apnea. My oxygen also dropped to 82% at one time during sleep so I'm getting a CPAP machine. I also wonder if having the PE corrected if it would help me breathe/sleep. My jaw is pretty small though so it could be from that too. Its hard to tell. I also have lots of stomach problems Im hoping would ease with the nuss bar too . Its a really tough decision and risk.

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jonesy replied to the topic 'sleep apnea' in the forum. 2 days ago

I am 37 yr old female. Tall and slender with PE . My HI is 3.8. I have always snored and had trouble sleeping and I recently had a new sleep study that showed I have mild apnea. My oxygen also dropped to 82% at one time during sleep so I'm getting a CPAP machine. I also wonder if having the PE corrected if it would help me breathe/sleep. My jaw is pretty small though so it could be from that too. Its hard to tell. I also have lots of stomach problems Im hoping would ease with the nuss bar too . Its a really tough decision and risk.

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Jodi replied to the topic 'Insurance' in the forum. 3 days ago

So, I am new to the forum. My son is recently going through the process of having surgery to correct his pectus excavatum. They are doing the reconstructive thoracic surgery. He has limitations and restrictions due to it. But his insurance company has denied his claim saying it is cosmetic. Even though his test and imaging truly show he has issues. Is there anything that can be done to have his claim approved?

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PEctusaurunuss replied to the topic 'Can't afford recliner, best sleeping aids post-Nuss?' in the forum. 7 days ago

2nd Fish's comments

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Patricio created a new topic ' Contact sports after Nuss bar removal' in the forum. 7 days ago

My son will probably get the Nuss procedure when he turns 11 or 12. I know he has to avoid contact sports while the bar is in place. But is it safe to continue playing football and wrestling after bar removal?

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Scougz created a new topic ' Nuss 27 y/o M 6’10” 130+kg' in the forum. 1 week ago

Hi, l have been planning and organising to have my P/E surgically corrected for a long time now but over the last few months and the last week with the arrival of my medical visa I’ve realised that is actually going to happen. I’ve decided to travel to India to have my surgery as Australia’s medical system is happy to keep me waiting for years. I’m having the Nuss procedure and just awaiting a date to get it performed. I’m wondering if any other large people have had it performed before and if so does it change anything for recovery or amount of bars required? I’m 6’10” and 130kgs at 20% bf.

Thanks

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Fish replied to the topic 'Can't afford recliner, best sleeping aids post-Nuss?' in the forum. 1 week ago

You will want both.....
I went on craigslist and bought a used recliner from a private party for $150. Then gave it away when I was done, about 4 months later. You really need this........you can use your sofa too with a lot of pillows but you might ruin it by lying in it all the time.
You really want the electric type recliner so you can adjust your position. You will be struggling to find a certain position that doesn't cause pain so having the ability to adjust is nice instead of up or down.

The wedge pillow it really based on your height. I hated the wedge pillow but if I wanted to sleep in the bed I had to use it.

Essentially find a place in your apartment where you can lay at a 45 degree angle and plan to spend a lot of time there.

Good luck with your surgery!

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jthatcher3568 created a new topic ' Can't afford recliner, best sleeping aids post-Nuss?' in the forum. 2 weeks ago

Hello!

I am a 22 y/o F being Nussed by Dr. J on March 6th. My husband and I are about to graduate from college, and we don't have room in our dinky apartment OR our dinky budget for a recliner :lol: Any suggestions about what I should sleep on/with?

I've heard that foam wedges are the best, but there is such a wide variety! Did you prefer a taller/steeper wedge or a shorter/gentler one?

Any tricks of the trade?

Thanks!

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BostonMom created a new topic ' Seeking Boston area interventions' in the forum. 2 weeks ago

So grateful to find this site. I am a mom of a 13 yo who has PE. Looking for dual treatment approach.

1. Who would you recommend in the Boston area for surgery?
2. We are also interested in exploring PT. (Preferably on the North Shore)

My research is making me understand more and more how his PE is likely the cause of his very low weight (feels full quickly) and likely contributing to his low endurance and over-riding fatigue. He has no muscle mass and a BMI in the 2-3rd%. We have not been evaluated aside from his pedi but I am looking for the best option for surgery. My research led me to Mary Massey's work on PE and ideally we'd try PT too. I appreciate any suggestions or thoughts as I am very new to all of this.

Thank you.

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Brandel created a new topic ' Developing Pectus Carinatum with bar still in?' in the forum. 2 weeks ago

Hey guys! Hope you're all well.

I have a problem after my operation and I just wanted to see if anyone else been in the same situation and what happened to them.

I am 22 years old and had mild/mid asymmetrical PC with rib flare for all my life, until last year when I finally made the decision to get it corrected.

I did it mostly because of physical reasons eg breathing troubles, back pain etc. But of course also because of looks. I don't think anyone with PC/PE hasn't dreamt of having a normal looking chest.

Prof, Schaarschmidt operated on me last year in april and at first the results were pretty good. It was pretty symmetrical and the rib flare was better although still there.

But a few months after the operation I started to see that my pectus is coming back some. I also got a rib (or the bar?) on my right chest poking out pretty bad. Feels like the bar has moved or something. I think it might have to do with me braking a rib ~2 months post OP when I got pneumonia and was coughing pretty bad.

Tried contacting Prof, Schaarschmidt but he hasn't come back to me in 2 weeks.

Anyone had this happen to them? If yes what happened? Did you get to do a new surgery? If yes was it free? I was paying for my first surgery out of my own pocket and I'm pretty bummed out right now to say the least.

I am greatful for any tips or answers you might have.

Thanks for reading.

Best regards,

Brandel

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jonny1 replied to the topic 'What are the best healthcare plans for Pectus Excavatum?' in the forum. 3 weeks ago

This is something I would like to know. I had all the testing done and my haller index is 5.2'. Now that it's 2018 and too late to sign with affordable care act, I need some guidance. I'm thinking to just go ahead and do self-pay and maybe get financial assistance. I'm going to call tomorrow to see what the minimum I can pay per month.

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There’s adversity, and then there’s a four-hour-long operation with a side order of preparing to move away from the only place you’ve ever lived....

jmartelok created a new topic ' 18F, Had Ravitch Procedure Around 1.5 Months Ago' in the forum. 3 weeks ago

Hi! I'm an 18-year-old female, and had the Ravitch procedure on December 15. Normally, I wouldn't post this kind of thing, but I found a lack of before/after for girls around my age online.

My surgeon was Dr. Sheldon Bond in Louisville, Kentucky. He did a great job, and I am really glad I went through with this surgery.

I guess I'd start with my scoliosis. I had a typical severe case that was affecting my heart and resulted in operation. I think that my PE and scoliosis were connected, as my PE began worsening around the same time my scoliosis showed up.

Anyways, I had a spinal fusion two years ago, and started asking about PE. I'm unsure if it presents differently on females because of breasts, but I do know that I never particularly identified with photos of PE online, even though a later measurement said my Haller index was 6.something (I want to say 6.4, but I can't quite remember).

After many months of ultrasounds on my heart and irrelevant asthma tests, they concluded PE was restricting my lungs and had moved my heart pretty far over. This meant that my insurance would cover any procedure!

I scheduled the surgery for my winter break, thinking I'd be out for a month or so; I'd read terrible things online about the recovery.

If it had been purely cosmetic, I may not have gotten the surgery. But I've never been able to run a mile in my life, and I'll be damned if I never do. So I got it.

The day of, the hospital was super crowded because of flu season. They wanted me to reschedule but I went through with it with the understanding that I would not get a room. I also was unable to get an epidural because of the spinal fusion.

The next thing I remember, I'm waking up in a long room with a lot of people and I feel completely upside. I could breathe really deeply in a really strange way. It hurt, but it was still deeper than I think I'd ever breathed before. I vaguely recall not shutting up about dark matter/antimatter and timespace theories, but that was about it. It was the medicine, I'm sure, but there was not much pain, just strange pressure. I couldn't really move my head, but laid all the way down and fell asleep.

I was moved to my own room and was walking the next day––albeit just to the chair. The day after, I was walking entire laps around the hospital. This recovery, though relatively severe, was almost nothing compared to my spinal fusion.

With the help of some Shameless and delicious hospital slushies, I was out within five days. They prescribed me a stool softener, muscle relaxer, antibiotic, nausea inhibitor, opiate pain medicine, and emergency opiate pain medicine. Laughing, sneezing, coughing, and hiccuping hurt like hell, but everything else was decent! Falling asleep was kind of a mess in a completely flat, normal bed, but I just stacked pillows.

As far as pain medicine, I stopped using my Oxycodone within a week and never touched my Percocet. I did use the antibiotics to term and the stool softeners as needed. The muscle relaxers were pretty necessary as well as I already struggled with back tightness before the surgery and don't exactly enjoy feeling like somebody is stabbing me in the back when I wake up.

I went back to school on the first day, but came down with the flue. I would have been able to go back though!

So TLDR, the surgery has surpassed my expectations. I thought it was going to kill me, but in light of previous experiences, it was a fairly simple and straightforward recovery. The hardest part was probably the first two or three weeks, and then it started getting easier. I'm on my sixth week now, and am hoping to try to start swimming or jogging soon. I can breathe easier than ever, and it still seems so weird to have a flat sternum.

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albania_25@yahoo.com has liked a Groups 3 weeks ago

Dr. Barry E. LoSasso, a leading pectus surgery specialist and pediatric surgeon, founder of the successful West Coast Center of Excellence for...

pectusnewbie101 replied to the topic 'Any patients of Dr Hans Pilegaard ?' in the forum. 1 month ago

ok thanks,

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23m_pc_uk replied to the topic '23 years old undergoing bracing for PC' in the forum. 1 month ago

22 hours is amazing well done.

I can’t get more than about 15 it’s so painful.

Who did you get the brace from and how long do they say it takes?

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Davis replied to the topic '23 years old undergoing bracing for PC' in the forum. 1 month ago

I have been wearing it around 22 hours a day.

I know exactly what you mean about how when you cannot do your stretches it is really tough.

For sleeping the only way I am able to sleep is by buying a foam mattress pad at coscto or bed bath and beyond to go on top of my bed. It still took a few sleepless nights until I was able to sleep on my back with the brace on.

I get some pretty significant bruising too. I think it is important to take it off around every 3 hours at least for a few minutes so that the bruises do not turn into sores and do not get worse.

I agree let's keep in touch. Let me know if you have any other questions.

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23m_pc_uk replied to the topic '23 years old undergoing bracing for PC' in the forum. 1 month ago

Thanks for replying Davis. Good to hear other people my age with the brace.

How many hours have you been managing to wear it?

I find it very painful at work when I’m not able to keep doing my stretches

And sleeping I’ve still not been able to get my body used to.

My chest feels very bruised.

Be good to keep in touch to hear how you get on

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Davis replied to the topic '23 years old undergoing bracing for PC' in the forum. 1 month ago

Hi 23m_pc_uk,

I am one month from being 23 and I am currently undergoing bracing treatment for PC. I started bracing in October, so it has been 3 months.

What I have found is that the brace only works when I am wearing it. If i take it off for more than 3 hours I find that it begins to regress. I find that the best results come when I do light exercise, breathing exercises, and chest strengthening exercises. Sometimes it will be more painful or uncomfortable to exercise, but it seems to help.

As for sleeping with the brace, it is very helpful to get any sort of foam mattress topper or pad to go on top of your mattress. This will make sleeping more comfortable.

Because we are both older, the bracing process could take longer and possibly be more uncomfortable. Do not get discouraged if your results take longer than younger kids.

Let me know if you have any other questions.

Davis

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Crossland replied to the topic '6 year old with PE' in the forum. 1 month ago

Hi Chris, Are you based in Auckland, or could you recommend anyone in Auckland / around Pukekohe please? Thank you.

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Crossland replied to the topic '6 year old with PE' in the forum. 1 month ago

Hello! Is there any update available, or where about in New Zealand this new pectus team (if formed?) operates from? Thanks you.

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Crossland thanked offgridchris in topic 6 year old with PE 1 month ago
Daisy replied to the topic '6 year old with PE' in the forum. 1 month ago

Hi, i just joined as was googling and my nearly 7 year old girl looks just like your child? We are in chch and have no real direction. I dont want surgery for her now unless life threatning. We do yoga and massage but concerned deformity will get worse with growth. Any response would be greatly apprectiated.

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WarriorSaint replied to the topic 'Digestive problems after Nuss failure' in the forum. 1 month ago

Thank you, Fish. I have been through every test imaginable, and no one can pinpoint the cause of any of this. But I never had any of these problems until the regression. The fact that my Haller index returned to the same as it was before surgery makes it seem logical to consider a redo surgery in any case. And I suspect this will resolve the digestive problems.

Best,
WS

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