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pectusaris replied to the topic '28yr old male from UK - Post Surgery (Custom Made Implant)' in the forum. 11 hours 51 minutes ago

Thank you for sharing, really good results! Enjoy that flat chest!

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The Porter replied to the topic 'Going to have the Ravitch' in the forum. 20 hours 2 minutes ago

No worries, if you're still there i'll come and say hi.
Good luck with the op...

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Craig36 replied to the topic 'Going to have the Ravitch' in the forum. 20 hours 12 minutes ago

Might see you on way out

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The Porter replied to the topic 'Going to have the Ravitch' in the forum. 20 hours 25 minutes ago

Wednesday 9th.

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Craig36 replied to the topic 'Going to have the Ravitch' in the forum. 20 hours 27 minutes ago

What date mate I’m the 1jan

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The Porter replied to the topic 'Going to have the Ravitch' in the forum. 20 hours 29 minutes ago

Hi Craig,
You'll never guess what...!
I've had all the tests and i'm booked in with Joel January 2019 too!!

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Newtonian replied to the topic 'Surgeon who is against Nuss Procedure' in the forum. 3 days ago

In an interview, Dr. J has said that she is for fixing PE. So it would be better to ask her. She is "pro fixing".
www.youtube.com/watch?v=ixdzu4OxANk

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dawnandaj created a new topic ' Surgeon who is against Nuss Procedure' in the forum. 3 days ago

Hi everyone
My son is 15 years old. He has a haller index of 5.2, compression on his heart and restrictive airway disease. It is a miracle but he has no symptoms at the present time. We met with a surgeon here in Atlanta, GA who tried to talk us out of the surgery! We were shocked but now we are second guessing ourselves. Our son still wants the surgery. He is very self conscious. Does anyone have any advice? We are also consulting with CHKD in Norfolk, VA.

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Newtonian replied to the topic 'Newtonian's Journey' in the forum. 4 days ago

It's now 3 months since my surgery. There is still some pain once in a while. I can lay down on my side. But a weird thing is that there is still tightness when I wake up. I have to wait a while to loosen up before I work.
When I teach my students, I sit down and use technology. It's a little painful to keep writing on the board for a long time.

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KMOhio replied to the topic 'PE Family!' in the forum. 5 days ago

Hi Sharona,
My case was also very severe. When both my girls were born, especially the oldest one, I definitely noticed PE right away. I even got a consultation for the oldest when she was 7 because it looked almost exactly like your sons. My niece was also born with PE and ended up with correction surgery several years prior. We were told to give it some time since it wasn't so severe. For us, that worked out well, she actually filled in some- not much but some as she grew. She still has a very mild case but the younger daughter completely formed in and I never got a consultation. For myself, PE is a definitely highly inherited and I was the first for the correction surgery. We know my paternal grandmother had a mild form but back then they did nothing about it. So long answer short, give him a few years and watch it closely. Trust your gut and you will know if you need to take him in for a consult.

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BakedAlaskan replied to the topic '47Yr Female, Haller 5.82, Surgery date Dec 2018 with Dr J' in the forum. 6 days ago

I’m no expert but it sounds like you should take care of the pectus issue first. After you get the bars out, you may want to consider Rolfing to address the scoliosis. I’ve only seen pictures but the results look impressive.

Best of luck with your journey; we are all here for you and to support you.

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Levszan replied to the topic 'P.E Questions and Experiences' in the forum. 6 days ago

Thank you for you replies! Feels good hearing others thoughts! As an update, I went to my doctor, and spoke to him about my pectus. He is going to contact the orthopedic surgeon. In about a month or 2 months I'll go there (waiting time is horrendous here in Sweden). After that he/she will decide whether I'll do the Nuss procedure, or if I'll get a vacuum bell.

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CarolM0823 replied to the topic 'PE Family!' in the forum. 7 days ago

Hi Sharona, you mentioned that you have heart palpitations. I started having severe heart palpitations when I went through a growth spurt as a teen. I had undiagnosed PE at the time. I have been on a very high dose of beta blockers ever since to control it. Finally I have been diagnosed at the Mayo Phoenix and the Cardiologist on Dr. J's team said that my cardiac response to the compression is typical. I waited so many years for explanation. He also said that it is likely reversible when the compression is removed. So in my experience I started having problems upon my growth spurt. No one back then even considered that it was my chest wall causing it. It has taken so many years for a diagnosis. Its good that you are more educated than I was about PE.

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CarolM0823 created a new topic ' 47Yr Female, Haller 5.82, Surgery date Dec 2018 with Dr J' in the forum. 7 days ago

Im very nervous about my upcoming surgery date on Dec 6th 2018. I guess Im a bit older than the average patient and Dr. J'.s big concern is that I also have scoliosis with Cobb angle of 39. I was told that it may worsen after surgery as the bars will place a lot of pressure on my spine. I saw a spinal surgeon the same week as my consult with Dr. J. He indicated that he would follow my progress and monitor for worsening of the scoliosis. Im very nervous regarding the general surgery and Scoliosis complications. It sounds like there is limited data on Nuss effects on Scoliosis in the USA. I will be travelling from the East coast to AZ for the surgery.

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Idocad replied to the topic '38 yo male, Nuss 1994, modified Ravitch Aug 2018' in the forum. 7 days ago

Hi Johny,

Thanks! Yes, that bar is very similar to a Nuss bar, but it's shorter than a normal bar. It's there to keep the sternum elevated as the cartilage heals. It will be removed at some point in the future, possibly around the one year mark. The plates and screws on top of the sternum are permanent. They are there because I needed a sternotomy in two places to untwist my sternum.

-Dan

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danouk replied to the topic '28yr old male from UK - Post Surgery (Custom Made Implant)' in the forum. 7 days ago

Haven't posted for a while so thought I'd give another quick update :)

I'm now just over 2 months post surgery, wow how time flies! I'm continuing with the gym and have started lifting heavier weights, my chest feels normal now and I feel like I have my complete strength back.

The most rewarding bit though is when I went clothes shopping last weekend, I used to always wear tight clothes so my dent didn't swallow tshirts and jumpers when I'm sat down or wearing a seatbelt. Got a few new jumpers and shirts that I wouldn't usually buy and I'm loving the natural dip I now have centre chest and how my new clothes sit on it. I always used to wear tshirts under my shirt too, that is also now a thing of the past. Overall I'm feeling great and still very please with the results, the great thing about the implant is that there is no chance of regression, so my PE journey should have now ended! Going to Barbados in November and can't wait to take my shirt off on the beach!!

I know a couple of guys have booked consultations with Mr Ahmad, please let me know if you have any more questions :)

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johny66 replied to the topic 'Definition of depression' in the forum. 1 week ago

Hi Izzy,

Yeah its actually very close to its original position before the nuss
I just saw a surgeon last month and he said I have significant upper and lower pectus and basically said the NUSS bar failed as there should have been 3 inserted,
What is so funny is I saw one of Sydney's leading surgeons 3 moths earlier and he said he cant see anything wrong with my chest come back in a year if you still have problems... Ha ... I have seen 5 doctors in Australia and not one consistent opinion.
As for symptoms, The stabilizer bars have f*cked up my ribs totally, have dents and constant pain, I also feel my sternum needs to be cracked out, like you crack your knuckles. Next doctor I'm playing on seeing is apparently the most experienced in Sydney Australia and I saw him about 35 years ago so he have been around a while, at the time he told my parents it was "cosmetic" I wonder if time has educated him about PE?

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johny66 replied to the topic 'Definition of depression' in the forum. 1 week ago

1 bar for just over 2 years

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johny66 replied to the topic '38 yo male, Nuss 1994, modified Ravitch Aug 2018' in the forum. 1 week ago

hi Dan,
Its great you are off the heavy meds, amazing photos you have posted. Is that a NUSS bar they have inserted as well? and what stays in and what comes out after you are fully healed?
Johny

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Idocad replied to the topic '38 yo male, Nuss 1994, modified Ravitch Aug 2018' in the forum. 1 week ago

Update - 7 weeks post-op

My recovery is going well. At my most recent follow up appointment, my surgeon is pleased with how everything looks and how the cartilage is firming up. I'm no longer on the heavy medications, I'm using Ibuprofen and Tylenol for pain control now. There's not really much pain, but more of a constant discomfort and pressure from the bar beneath the sternum. I'm still getting used to how it feels. My pec and ab muscles are still quite weak and I am still working on range of motion exercises to slowly stretch the muscles. My left shoulder remains tensed up, and I find it hard to figure out how to make it relax. I had bursitis in that shoulder earlier this year, and it feels like that again. I am trying to use resistance bands and ice to sort that out, hopefully it will feel better soon.

I continue to use my spirometer a few times each day as a deep breathing exercise, and I have increased the pace of my daily walks to get more of a cardio aspect. I got a membership to my local recreation center and have exercised on the stationary bikes a couple times.

So far so good! Even though recovery is slow, it's been trending in the right direction!

-Dan

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Idocad replied to the topic 'P.E Questions and Experiences' in the forum. 1 week ago

Hello Levi,

I would suggest as a first step to make an appointment with a pectus surgeon and discuss all of your concerns and questions with them and to determine all the specifics of your PE. Personally, I think the vacuum bell is a great first option to try, since it's non-surgical and low risk. As Jlittleton said, it requires dedication to wear it as prescribed by your physician, usually twice a day for at least 1 to 2 years. Since it's still a fairly new treatment, it's ability to permanently fix the PE is still debated. At the very least, using it prior to a Nuss surgery could make your chest wall more pliable and possibly make your recovery post-op a bit easier. I am 38 and used the Klobe VB prior to my Ravitch procedure. I would recommend the Klobe bell, Echart Klobe is the German engineer who first designed this treatment. You can purchase it directly from his website with your surgeon's permission. www.trichterbrust.de/

Good luck Levi and keep us posted!

-Dan

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Randolph replied to the topic '51 y/o male with surgery date of 11/27/18 with Dr. Jaroszewski' in the forum. 1 week ago

Thanks so much BakedAlaskan! We appreciate your tips and will look forward to taking some frequent walks in the beautiful Nov/Dec Arizona weather! We've got a nice looking patio on our condo too so there should be a good opportunity for fresh air napping. :)

We'll be posting updates, appreciate the support on here!

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Randolph replied to the topic '51 y/o male with surgery date of 11/27/18 with Dr. Jaroszewski' in the forum. 1 week ago

Hi bockoboy - thanks for your tips! We had no idea about renting a recliner, what a great idea!! We've already paid for a condo with a recliner in it so we're hoping it's a comfortable one. We went ahead and spent extra on the flight back to be in first class with a non-stop flight that gets us as close to home as possible (1-1/2 hr drive). The flight will be about 10 days after surgery so we're hoping that will be ok.

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Randolph replied to the topic '51 y/o male with surgery date of 11/27/18 with Dr. Jaroszewski' in the forum. 1 week ago

Thanks for all the great tips Nolij! We will definitely test drive the wedge pillow before surgery. I'm sure that the hours can drag on so thanks for the entertainment ideas too. Our vacation rental looks like a really good set-up but we'll see when we get there and make sure there is a side table of some kind.

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Randolph replied to the topic '51 y/o male with surgery date of 11/27/18 with Dr. Jaroszewski' in the forum. 1 week ago

Thanks Dan! Our budget will not allow us to stay in the vacation rental longer (unfortunately). So, we're hoping for the best on the trip home! We've spent a bit more on airfare for a non-stop flight that gets us as close to home as possible, in first class. Thanks so much for your support on here, we sure appreciate it!

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teejay created a new topic ' 22 ftm just contacted CHKD for Nuss consult' in the forum. 1 week ago

Don’t know if this belongs here or in journeys so pardon if it’s the wrong section!
I was hesitant to ever post here but I wanted to document the entire journey online so that someone else in my position can have at least one person like them to refer to. I only ask that if you have personal problems with transgender people that you keep those comments to yourself. Only want to talk about my PE, not anything personal but for any trans guys reading, I stopped counting but I think I’m about a year and a half on T.

I’m 22 y/o, legally a male but assigned female at birth. I have pectus excavatum that’s almost entirely on my right side. Looks like my sternum is facing the right as well. Don’t know my index yet. Just contacted a top surgeon (for the laymen, top surgery is similar to mastectomy for the purpose of making the chest look more male in transgender men) for a consultation but he said he’d prefer my pectus to be corrected first since I told him I plan on getting it. My original plan was to have top surgery then Nuss because that was the order of priority for me and because I was hesitant of being misgendered (being called “she/her”) or mistreated by hospital staff etc. for having breasts as a male. But I don’t want to be stubborn if my surgeon feels like he’d get the best results after Nuss. Just requested an appointment for consultation at CHKD and hoping to get Nuss with Dr. Obermeyer since insurance will cover.

I’ll post updates in the journeys subtopic throughout the process up until after top surgery has healed so expect to hear more from me :)

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