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jonesy replied to the topic 'dizziness, nausea, fatigue' in the forum. 3 hours 7 minutes ago

Thanks for the reply
Yes, I always feel so tired and lightheaded. I've tried many things over the years....pills that help give you energy, anti-depressants, etc. Nothing helps. I am looking forward to my appt with Dr. J next week.
Its weird....I always knew there was something wrong with my chest but always considered it a heart problem first. I just recently read my reports from Mayo MN from 1997- I was in HS at the time, and they even said my tachycardia was secondary problem to my PE. Unfortunately back then they said there was not a way to fix it unless they break your sternum etc and didn't advice it. They said quit all things physical and strenuous. The only other doc thats ever commented on it was my Gyno a few years ago. Its kind of sad all the times I've been in to my general practitioner and cardiologists they never really help me put two and two together. Anyway, Im VERY curious what it would feel like to not have a dip in my chest. What it would feel like to breathe...run around the block...anything really lol. Is that weird?

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Myshkin created a new topic ' Recovery, plane travel questions' in the forum. yesterday

Adults who have had the Nuss, what could you do/not do by two weeks? One month? Did anyone fly home two weeks after surgery? If so, how was it? Also, any tips on recovery, like food, things that make you heal faster or more comfortable, etc.?

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pectuscoordator replied to the topic '5 year old with suspected PC' in the forum. yesterday

I agree that Pectus Services is great!!

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Jlittleton replied to the topic 'connecting OpenViBE to arduino' in the forum. yesterday

Larry, I believe you are on the wrong Forum and web site.

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Pectus Services replied to the topic '5 year old with suspected PC' in the forum. yesterday

Your welcome Luminita and happy to help. Our T-Joe Pectus Brace was the first in the United States with over 3,000 success stories and growing! The T-Joe is available throughout the United States like Jim's Facility in North Dakota. We look forward to assisting in your childs pectus care. Don't forget we have the only pectus brace for girls and it even comes in pink!

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Luminita replied to the topic '5 year old with suspected PC' in the forum. yesterday

Thank you for your fast answers!

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Jlittleton replied to the topic '5 year old with suspected PC' in the forum. yesterday

Luminita, As an Orthotist/Prosthetist and clinician who also sees patients with PC, We use the T Joe brace on all our patients with asymmetric and symmetric deformities and we have very good results, I would highly recommend the T Joes Brace.

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Pectus Services replied to the topic '5 year old with suspected PC' in the forum. yesterday

Happy to help our TJoe Brace has the ability to correct both asymmetric and symmetric deformities we even have a pink version for girls!

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Luminita replied to the topic '5 year old with suspected PC' in the forum. yesterday

Hello, my daughter was diagnosed with asymmetric PC. She is ten years old. Could you tell me, please, if the PC brace could help in this case? Thank you!

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Juju shared a photo. yesterday

Myshkin replied to the topic '34/m/PE/hoping for surgery -input?' in the forum. 2 days ago

I just created an account and am not sure. I think you can send a message by clicking the envelope.

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David is friends with Myshkin

David replied to the topic '34/m/PE/hoping for surgery -input?' in the forum. 2 days ago

Hi, and thanks for your reply. I do actually have a couple questions about the process for actually getting in direct contact with Dr. J's office (already registered with the appointment office). Is there a way to send you a private message on here or something? Thanks!

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Myshkin replied to the topic 'Dr Irshad nuss procedure bad decision' in the forum. 2 days ago

I think you should report him. That sounds unethical.

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Myshkin replied to the topic '34/m/PE/hoping for surgery -input?' in the forum. 2 days ago

Hi, I am 32 and will be getting the surgery by Dr. J in July because my pectus is affecting my health. I can't wait to get it done. I am miserable due to trouble breathing, and my heart bothers me a lot. I hope the surgery will fix or at least improve my issues.

Yours looks above a 3.25 which is severe. I would suggest getting a metal allergy test before surgery just to be on the safe side. My dermatologist had to order a specific brand that Dr. J recommended. Let me know if you have any questions or just want to talk!

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LarryWalker created a new topic ' connecting OpenViBE to arduino' in the forum. 2 days ago

Hello,

I am trying to communicate OpenViBE to arduino.Im using BrainWave ActiCHamp to aquisition of brain waves, and openvibe will communicate with arduino to move some motors, but i cant do the communication with both devices.BrainWave actiCHamp --> OpenViBE --> Arduino --> motor action.

Please help.

I didn't find the right solution from the Internet.

References:-
openvibe.inria.fr/forum/viewtopic.php?f=13&t=9770
Promotional Video Campaign

Thanks

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David created a new topic ' 34/male/PE/hoping for surgery - input?' in the forum. 3 days ago

Hi guys,
My name is David. I have lived with PE for many years, a similar story to all of yours. I first became aware of it when I was around 12 or 13, but I didn't know the condition actually had a name until I was 18 or so... found it doing some internet research. I brought it up to my parents and occasionally a doctor, but unfortunately everyone told me it was a cosmetic condition and I would just have to live with it.

Long story short, I am 34 now and have coped with it all this time. Last week (for the first time in many years) I found myself researching pectus on the internet. 20 years later I now see that the Nuss procedure is being performed on adults with so much success!! I thought I missed my chance at surgery when I was younger, so I had completely resigned to living with this.

The major shock that came to me while researching last week was reading through the list of symptoms in adults with pectus excavatum. These are the same exact things I have been struggling with my entire life, and in the last few years I have noticed them worsen significantly: chronic fatigue, tachycardia (to the point it feels like my heart is going to beat out of my chest), palpitations, chest and back pain, reduced exercise tolerance, and on and on. I am an active person and try to live a pretty adventurous life, but I've had this underlying feeling that something was wrong with me all of this time..and I didn't know why. Or maybe I was trying to ignore it.

Reading these forums and seeing the physical and psychological relief that everyone has experienced from surgery instantly helped me make a decision. I am going to do whatever it takes to get this fixed right now, and hopefully lengthen and improve the quality of my life.

So my task this week is to start taking steps to get the testing done. I've registered online for an appointment with Dr. J at the Mayo clinic, and plan to call them tomorrow. I'm also hopefully going to get a referral to a cardiologist locally here to get all of the tests done ASAP. My insurance situation looks very hopeful (Blue Cross-and the Mayo clinic is In Network), but I'm going to wait to talk to them until I get the tests done.

With my symptoms, and especially the tachycardia, I am willing to bet that my heart is being compressed by my chest. Of course, just like everyone else, I already have some trepidation about things like the Haller Index. Any input? From the pics, do you think this is likely a severe case of PE?

One way or another, I'm going to get this fixed. And I'm going to do it with Dr. J. Her Ted talk was really moving and I can clearly see that she has devoted her life to this. That's the kind of person I want to put my trust in for something this huge. So.... I'm excited! I tend to jump into things in life when it feels right (so does my partner and she is right beside me on this already) so even on Week 1 it feels like this new journey is already underway! Life is crazy.

P.S. Thank you for all of your stories. I've been reading them day and night and they are highly motivating.

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Matt created a new topic ' Finally, a referral' in the forum. 4 days ago

Hi guys, I have finally been referred to someone- a Cardiothoracic Surgeon, is there any questions I should be asking. Thanks in advance :)

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Newchest replied to the topic 'New member with some questions' in the forum. 5 days ago

Hi dh66,

My titanium plate was screwed across my chest so it is very stable (~20 mini screws). I have been going to gym and doing pull downs and chest press with no problem. I imagine, however, that the size and number of plates will vary depending on the specific case. Pls note that this plate is different to the bars that are used in the Nuss procedure which seem to be bigger and I understand are meant to hold the chest in position....I am not sure if similar plate(s) would be used in a PE case.....

For me, the reward has been worth it so far....Having said that, my main concern with the surgery was the cartilage removal and whether the cartilage was going to re-grow and re-attach to the sternum. From what I read, it is important that the layer covering the cartilage (perichondrium) is preserved as much as possible, however, in older patients like me, this layer is already calcified/fused and therefore removed along with the cartilage...the implications of that are yet to be seen but again, I feel very good today....as I mentioned in other forums, if I were younger, I would have tried bracing first....

I think that having an experienced surgeon doing my surgery also gave me confidence and mitigates some risk. I strongly suggest for you to contact a surgeon that has done the procedure in adults. I recommend to look for expert advice from Dr Jarosewski in the US if possible.

I can also send you a couple of useful medical papers (not that difficult to understand) that detail the procedure and results on hundreds of patients, so that you can ask more questions to doctors. Pls send me a private e-mail for that if you are interested.

Hope this is useful

Regards

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dh66 replied to the topic 'Uneven/more pronounced on one side of chest post Ravitch' in the forum. 5 days ago

Right, got that thanks. A bar, as in a device that is attached across-wise in your chest?... to where the ribs connect at the central sternum crux? Just had a look at your photos attached. I really like how your chest is out in it's more natural position which I imagine would free up functional capacity of your organs underneath, can you notice the difference?

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J.Richards replied to the topic 'Uneven/more pronounced on one side of chest post Ravitch' in the forum. 5 days ago

It involves an incision an the removal of the deformed cartilage. The dr then places some kind of support device, in my case a bar, under the sternum. The cartridge regrows and the bar is removed a year later.

Hope this help.

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dh66 replied to the topic 'New member with some questions' in the forum. 1 week ago

That's an awesome result Newchest. Thanks for that. Can you feel the plate move around when active? Would the plate and surgery be a acceptable sacrifice for you worth the health and confidence advantages?

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Newchest replied to the topic 'New member with some questions' in the forum. 1 week ago

Hello dh66. My condition was Pectus Carinatum (PC) and rated as "severe " although it was asymmetric (right side only) . I wrote more details in the topic thread "PC chest scared of surgery Ravitch" in the PC forum. After reading some medical papers about the procedure and talking with 3 doctors, I concluded that the surgery was not riskier than other common surgeries, however, each case is different depending on severity and other factors....a PC condition may be also different than PE in terms of risk ...
After 18 months I feel very good and I can basically do any excercise I used to do, the numbness on my chest is almost gone too. I am also getting used to the plate inside which will likely stay there longer....I can lay down on my sides as well now....Hope this helps! All the best!

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Jlittleton replied to the topic 'New member with some questions' in the forum. 1 week ago

Ymous, Just my thoughts on this, I am an Orthotist/Prosthetist who also sees PC patients in our office for bracing. Most of our patinets are around 11-14 years of age. PC bracing can be done on adults, such as your age, but at this stage, its more of improving the chest, not so much of correction, but it can be done. Bracing is usually worn on adults during waking hours, we try to get about 12 hours of wear. Depending on your PC shape, size and location on your chest, this processes would take about 12-24 months of wearing, again, on adults, bracing is for helping improve the PC presentation. You had mention that your PC is not that bad, would be a suggestion to try before you do surgery. That's just my thoughts. Good luck.

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dh66 replied to the topic 'New member with some questions' in the forum. 1 week ago

BTW - my condition is Pectus Excavatum (sunken in)

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dh66 replied to the topic 'New member with some questions' in the forum. 1 week ago

That's awesome Newchest. I'm in a similar situation to you in terms of age and the type of modified Ratavitch that a really good surgeon here in New Zealand does. He has successfully done if for people in their 60s. I'm only finding out things at the moment about surgery options at this point. How are you progressing? How severe was your condition? Was it a sunken in condition. They tell me that it's a big surgery and the chest is close to vital organs and risky. A couple of Drs appear to not recommend it, but it's not their area of expertise

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dh66 replied to the topic 'Uneven/more pronounced on one side of chest post Ravitch' in the forum. 1 week ago

Hi J.Richards - you had Ravitch procedure? What does this involve please?

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dh66 replied to the topic 'dizziness, nausea, fatigue' in the forum. 1 week ago

Hi Jonesy, I've just this moment signed up on here and getting information at this point before deciding on treatment. I can relate to your symptoms including the wooziness. I originally had a diagnoses of Chronic Fatigue Syndrome until figuring out what was going on. During times of high stress, I've occasionally woken from sleep in a panic with a sense of struggling to breath and rapid heartbeat. There appear to be surgical options here in my home country of New Zealand and maybe overseas.

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Jlittleton replied to the topic 'Worried about my 15yr old son' in the forum. 2 weeks ago

AnitaW, nothing to be sorry about, I would be the same if it was my child. I am not that great with geographic locations, but there is a clinic in London called Pectus Clinic, overseen by Mr. Ian Hunt, Consultant Thoracic Surgeon and medical director of the clinic. I am not sure how far you are from them, but my understanding they are very good. The company we obtain our Pectus Braces from, Pectus Services, has numerous clinics throughout the US and has clinic there (not sure when he is there), but it would be worth contacting them and talking to them about your son. You can google them at www.pectusclinic.com .

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jonesy created a new topic ' dizziness, nausea, fatigue' in the forum. 2 weeks ago

Hi Everyone.
Im considering getting the Nuss procedure. All my life I've struggled with nausea, eating, fatigue, and dizziness/wooziness every day. Anyone else struggle with this. I also never wake up rested. Even after 8 hours of sleep. I now have mild apnea and use a cpap but i'm still very fatigued. I also have anxiety and will wake up with a fast heartbeat. I am just wondering if any of these issues were resolved after correcting your PE. My haller is 3.8 and I have about a 20% impairment with my heart/lungs when I am physically active.I also sing and I struggle with breath support. I just want to fix my PE if it will also help all these other issues.

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