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24 Mar 2019
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TOPIC: Newly introduced to diagnosis

Newly introduced to diagnosis 9 months 2 weeks ago #7833

Are you not experiencing pain right now with it compressing your heart? I know for me since my last competition (where i was training 5hrs a day) I have a lot of chest and rib pain, to the point i thought i was having a heart attack. And I'm personally not worried about the pain, I had shoulder surgery a year ago and it was nothing compared to the pain I was having before. I know this is different but I'm worried I'll never be able to compete again and that isn't part of my plan lol. Even if its a lot of pain, its better than giving up my active lifestyle... Right now walking on the treadmill is too much for me and i haven't lifted weights in weeks. Not a happy time for me.

Newly introduced to diagnosis 9 months 2 weeks ago #7834

Heh... yes, I am experiencing rib pain and cracking daily and have been for a few years now. I have also been complaining about palpitations, racing, vertigo, etc... for nearly the same amount of time. I actually asked my doctor (since I am in my 40's now) how do I tell the difference between "normal" palpitations and a heart attack because I was thinking that I might need to know as my symptoms have gotten worse. That is when she sent me off to the cardiologist and he was like whoa, you have PE.

I weigh this out in my head almost daily. My quality of life is going down the way things are going now. I know I am likely being mildly ridiculous about the post surgical pain. I have a lot of intolerance to pain meds so I believe that is making me nervous that they won't be able to keep it under control.

I understand your worries about not being able to compete again, I would be nervous about that too in your shoes. My athletic ability has gone down recently, I am a hiker. To the point where I don't even hike that much this past summer because I always felt crappy and tired. Read around though, there are some people on this message board that are pretty athletic and they were able to continue after they are well healed.

Newly introduced to diagnosis 9 months 2 weeks ago #7835

I've got tolerance too, hydromorphone however kept my shoulder mostly under control, and i can't see them prescribing anything less powerful after such a surgery.
From your experience, i guess it answers my question about it being able to get worse even though we've had it a long time. Just two months ago hitting the trails was still tolerable but now... Poop. Lol i think if it's affecting us so severely though, we should just get it over with before we die or something from it. Ive read mitral prolapse is possible from this and that's a whole other can of worms right? When i first researched my symptoms i thought maybe it was pulmonary but that's before i knew PE could progress after we stop growing. I suppose our active lifestyle didn't help our cause. I wish you luck with whatever you decide. I haven't gotten my PE rated yet so i have no idea where i stand on the scale or if I'm even a candidate yet

Newly introduced to diagnosis 9 months 4 days ago #8015

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Sorry to dishearten you in any way Sparkle

I'm still a bit shocked with the diagnoses like TranceHippie mentioned. It was a long post too, lots to share. This forum is the first time I've been able to relate mutual issues after years of uncertainty/self- cynicism and doubt from the unexplained symptoms I've been burying anxiety over, so yes, a bit overly keen to share and problem-solve .

Yep, definately you are unique with or without PE, there a ton of things that make us all 100% different and I'm sure you do. If you find the means to have it fixed, then I'm sure you will make the best decision for you and your future in the first instance, then your partner, family and friends etc. As long as we live life to the fullest, I think is the key, and if the benefits of surgery become apparently worth it, then we can pursue that. Hope that didn't all sound too philosophical.

Newly introduced to diagnosis 9 months 4 days ago #8017

Sparkleandflex, I thought it was this thing called costochondritis... which is is an inflammation of the junctions where the upper ribs join with the cartilage at the sternum. I just thought it was really a really bad. case of this. It all is making a lot more sense now though. After I thought about it more I realized that I have actually been suffering from the symptoms caused by PE a lot longer than I first realized. I spent the majority of the last year going to bed with an ice-pack on my sternum and right behind it on my back, never thinking it was I also found out that this could be the reason my heart pounds to the point that I get light headed. All of this is weighing on the side of yea, maybe this would be a good idea to have surgery. The cardiologist recommended it, so I will see what the surgeon says.

Make sure to let us know when you get evaluated.

Newly introduced to diagnosis 9 months 4 days ago #8019

Hi SparkleandFlex,

I am from Canada as well and recently had my bars removed from specialist Dr. Jaroszewski. I went through years of research before I went through with the surgery and found no luck in Canada. There are a couple of surgeons who perform it in this country - in Toronto and in BC but they have high failure rates and not enough experience to be performing on you, in my opinion. I've read that people who had Nuss/ Ravitch procedures by these Canadian doctors suffer in pain while they have the bars in and seldom does it correct the deformity. Going to a specialist for a revision surgery would be double the cost if you had the funds to see them in the first place. I had to pay out of pocket as insurance would not cover out-of-country for this particular procedure.

As for your rib flare, a custom rib flare bracing is highly recommended over off the shelf. However, bracing is really only effective after surgery and if the surgeon breaks/ weakens your rib flare cartilage.

I also want to note that I had a horrible experience in Canada looking for help prior to my surgery. I visited many practitioners and they all dismissed my case and said not to worry, and advised not to get surgery due to the severity of the operation. I urged them to get my tests done, I sent it to the Mayo Clinic and they had concluded that I was a severe case! Keep fighting even if they don't listen to you! Don't let the doctors dismiss your symptoms.

Newly introduced to diagnosis 9 months 4 days ago #8020

I'm seeing a doctor at the university of Regina about this and he has pretty much concluded that everything i am experiencing is due to the deformity. He wants to still rule out a few things before he wants to talk surgery options. I literally have no choice to have it done here in Canada however because i am already on permanent disability because i also have multiple sclerosis. I mean unless i can fundraise that kind of money to go abroad. Thank you for sharing that experience because i was having a really hard time with anyone even taking my symptoms seriously and i only found out by really accident. My experience at the ER where they couldn't see my heart on the right side and the sonographer doing my echo letting it slip i had a deformity. I see my cardiologist Friday and he might have some more answers for me but I'm going to push getting this surgery hard as i still haven't been able to get back to the gym or trails and im a 7day a week training athlete. My weight has finally stabilized at 128. I figured this would be a long process though as even getting ot figured something was wrong with my shoulder was loads of pushing and complaining only to find out i needed urgent surgery. I doubt urgent surgery would be the case here but i know from my experience with MS, if I want anything to be done, i have to annoy the doctors til they don't want to see me anymore.
I'll keep you guys updated as things progress!
Thanks again for your words and support!

Newly introduced to diagnosis 9 months 3 days ago #8022

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We look forward to your progress report.

Your cardiologist would want to be checking for back-flow through one of the heat valves that can occur with the chest compression on the heart. I do light cycling, light/moderate weights and dance almost everyday and are relatively fit, and I think the benefits of this showed in the tests and results I had, I would think it might be similar in your case. I saw a cardiologist a few months ago, after my diagnoses and was cleared from having back-flow and was encouraged to exercize.

I'm sure there are some excellent surgeons in Canada who could perform the surgery, but for comparison, I recommend researching this very clever and renowned surgeon here in New Zealand who has developed something called 'Small Incision Sternoplasty (S.I.S) for Pectus cases. The feedback from medical staff of him I've had this far is very complimentary. On the website (see link below), he gives his reasons for the procedure that he does and I encourage you to at least read into it as it will help your becoming informed process. I've shared this with other people on this forum too. He charges around NZD$27,000 (US $18,326) as of early 2018. Personally, I'm gradually looking at options before I decide I want to actually push for surgery in any case. I hope this helps in some way.


Newly introduced to diagnosis 9 months 3 days ago #8026

Would such a back flow show up in an echocardiogram? My echo showed my heart is working properly under normal circumstances aside from high heart rate and blood pressure and of course the position of my heart in my chest. I'll look into the procedure you've mentioned. As much information as i can have when seeing my cardiologist would be helpful as my doctor at the university has already determined this is the likely cause of my symptoms. I still don't understand why such severe symptoms out of no where when i just finished 6 months of hard training for back to back competitions. It was thr first year i had done multiple competition's but I've always been very active despite ms and my stunted cardiovascular ability. I honestly want to just suck it up and force myself in the gym but i wonder if I'll risk significant damage so I've been waiting for the go ahead from the cardiologist. This is unlike anything ive experienced, even symbicort seems to aggravate my symptoms. Friday I'll hopefully have some answers. :)

Newly introduced to diagnosis 9 months 2 days ago #8031

Yes, you definitely need to keep fighting and do NOT take no for an answer. You know your body best!
If they don't have the answers, that's fine, tell them to refer you to someone else who may.

When you do find a surgeon, ask them what their in-depth strategy is to correct the deformity and to manage pain. As in, short bars vs long bars? How many bars? How will they tie the bars? How will the make sure to get the bars in safely? What are the materials used and why? Do get a minimum of 2 bars. Some people get 3.
I would also advise you to research Dr. Jaroszewski surgical techniques as they are top notch. Hopefully a doctor in Canada can help mimic that for you.

You should also ask your doctor to test for your haller index. It's an indicator for how severe your pectus is.
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