PECTUS EXCAVATUM // UPDATE

  Рет қаралды 4,580

I Am You

I Am You

5 жыл бұрын

INSTA: 🍬@np.creative.au
TWITTER: @NPCreative_AU
ART FART: society6.com/nataliepurslow

Пікірлер: 59
@owwmygooch
@owwmygooch 4 жыл бұрын
Stay strong, you lose when you give up 💪
@gyloir
@gyloir 5 жыл бұрын
Glad you got a diagnosis, hope there is something they can do to help you.
@todddembsky8321
@todddembsky8321 4 жыл бұрын
Oye Nattering, Minnesota Here. I was raised in Rochester Minnesota, home of the Mayo Clinic. One of the worlds best research hospitals. If you ever come to the Mayo Clinic, contact me. I have plenty of people in Rochester that would give you and your family free room and board in a house. Far better than a hotel and with better meals :-) God Bless, I am praying for you. Minnesota ...
@IAmYou_N
@IAmYou_N 4 жыл бұрын
HI Todd thanks for the message. At this time we are slowly figuring things out i have a host of specialists appts coming up in Feb and at the moment i'm trying to get accepted under DSP because of the pain but also my chest is really restricting me from being upright most of the day... which as you can imagine really grinds down your employment options. If i'm ever fortunate enough to afford to go to America i will keep you and your generosity in mind. Thank you
@harristinkler7267
@harristinkler7267 5 жыл бұрын
Just know you fans are behind you no matter what you change your channel too. Glad to see them finally doing something to help get you healthier.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Thanks Harris I appreciate your support :)
@gearswhy5401
@gearswhy5401 5 жыл бұрын
I'm glad that you are posting again, but don't over work your self. Hope you get better
@JEPhotog
@JEPhotog 4 жыл бұрын
Have you looked into connective tissue disorders? Pectus Excavatum is very common in Marfan's Syndrome and Ehlers Danlos Syndrome.
@IAmYou_N
@IAmYou_N 4 жыл бұрын
Hi Jessica, yeah i have done, got tested haven't come up with anything but am under the care of a rheumatologist currently looking into other things.
@laboydan
@laboydan 5 жыл бұрын
Praying for you and for your doctors so you will find a good way to fix this !!!! Stay positive !!!!
@cardsquire9278
@cardsquire9278 5 жыл бұрын
I Can honestly say I’ve never heard of this and I’m sorry for not commenting with more insight, but regardless I’m incredibly relieved to hear that there finally some progress. In terms of whatever the channel will become I’m sure everyone with be supportive of you no matter what and that we’re all here for you. I’m hoping for a speedy solution and I guess you could say recovery process?? lol much love and keeping you in my thoughts 😊
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Thank you for your support. Its not particularly common in women so I'm not surprised you haven't heard of it, I didnt even now it was a thing until i was formerly diagnosed I just new I had a weird ribcage.
@mjbartholomew5317
@mjbartholomew5317 5 жыл бұрын
Another fan here who is behind you all the way. Good luck with resolving the medical issues.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Much appreciated MJ X
@demontana8769
@demontana8769 5 жыл бұрын
Miss Nattering, I've been here a while now but I've never commented before. ( I almost never do ) I'm not very good at explaining things so I avoid it whenever possible. I've ben concerned ever since your post a few months back ( the Every things changing post), I cried awhile after that, but I just didn't know what to say. I thought anything I said wouldn't make sense or make you feel worse. I couldn't do that to you. I'm very glad they may have found something fixable, please god, I hope so. I truly hope you can get better, you deserve it. Your smart, caring, funny and honest. You've got a lot of class and your Very beautiful. The world needs more people like you, a lot more. Will Rogers said " you'll know if you led a good life if the world is a lesser place without you ". I feel in your case the world would be gutted. We need more people like you, not less. So you post whatever you want or can. We'll wait for you, you don't hurry for us. I told you I was crummy at writing this stuff. Please get better, we need you. Besides, I've got a crush on you :>) With love and respect from the west: DeMontana
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Heya! Thank you for commenting! I really appreciate your words more so i really like knowing who's watching my videos :) Thank you for your continued support. I'm hoping to pop up another little update video soon ( mostly because i think when things like this happen other peoples experiences might actually assist with getting to the bottom of things) . until next time! Don't be a stranger :)
@meirsolomon5626
@meirsolomon5626 5 жыл бұрын
Wow, stay strong. You can do this.
@Jskew
@Jskew 5 жыл бұрын
Natalie, anyone who could say anything negative about you is a fool. You are still as beautiful as day one. I miss the jade but sending you all the best collarbones ;-) much love and keep on keepin on J.
@girlshavemeanhearts
@girlshavemeanhearts 5 жыл бұрын
I'm a 34 year old male with Pectus Excavatum. I was diagnosed with it when I was a boy, and just sort of lived my live. I'm not a doctor so take what I'm saying with a pinch of salt. Many of us complain of lower cardio capabilities, poor self image problems and asthma. If you were under 14 years old you could've used a vacuum bell (non surgical method) but as we get older our bones get too hard. The other non surgical method is to lift weights, this will make it look better and your breathing should improve (Riley Byrne is a completion winning body builder with pectus you should check his channel out). Then the surgical routes are the Nuss and Ravitch procedures. Both procedures can fail months after the surgery(the sternum pops back) and there is also a very small chance you can die because of the operation. The nuss procedure seems to be the best one though. Finally your psychology is the most important thing I need to look into that myself more now as well. Good luck!
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Heya, thanks for reaching out and letting me know your experience with it. Mine is a little lower down then the typical mid sternum anomaly ( essentially my xiphoid process is entirely curved around and barley visible). As i mention to Michaels comment I am exceptionally exercise intolerant and can't stomach much... i think probably other things like my blood sugar and my lung function which is relatively low generally, also play into this). I will totally check ut Riley Burnes channel (thank you for the recommendation). The only reason we are reaching out for a surgical procedure is because of the toll it is also taking on my spine and potentially my oesophagus which obviously aren't typical symptoms, i'm hoping they go the Nuss route but again due to the curvature of the xiphoid i really don't know what they could potentially do there. Thanks again :)
@richardhansen3703
@richardhansen3703 5 жыл бұрын
Hia Natt! I am a huge fan of your reactions, but I never comment because I always have watched your videos while at dialysis, and have limited movement. Glad to see the update, even happier to see your ok. I think you're beautiful no matter what. I'll pray for your recovery. I'll miss your reactions (as I already do). Love ya!
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Hi Richard, thank you for sharing that with me.am glad you found some reprieve in my videos and I am equally rather regretful to let the reactions go but sadly youtube is making it pretty hard to do anything without being penalised. I appreciate your kind words and thoughts and I wish you all the very best in your own journey.
@jamescurfman3284
@jamescurfman3284 5 жыл бұрын
Damn, that's rough, Nat! They JUST NOW got around to a diagnosis for this? WHAT THE HELL? Mom had some problems that she had been telling her practitioners for YEARS and nobody listened to her (I am the second-oldest of many children who Mom bore, just for reference). I have a sister who is MUCH younger than I am; I am literally physically old enough to be her father, and when she was ten (or somewhere around that age), Mom started bleeding profusely. They had to do a D&C to find the problem (I won't go into details about what a D&C procedure is, many of the ladies will know). Turns out, Mom had been correct the ENTIRE TIME, with one lump the size of a GRAPEFRUIT that she knew about (and many marble-sized lumps as well which she did not know about). She ended up with a hysterectomy because NOBODY IN THE MEDICAL PROFESSIONAL WORLD LISTENS TO ANYBODY THAT DOES NOT HAVE SOME SORT OF MEDICAL DEGREE UNDER THEIR BELT. It's REALLY stupid. It's like, 'Look, I LIVE in this body, I KNOW how it is SUPPOSED to act, it's doing something I do not like, so WHY do you IGNORE ME when I tell you that something is WRONG?' These assholes are really stupid. Then they have the gaul to charge arms and legs and homes for the privilege of having them laugh in your face. I certainly HOPE you get all of this changed for yourself! I understand about the channel, that totally makes sense! Much love!
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Firstly James I am so sorry your mum had such a terrible experience! that sounds truly dreadful to have suffered as long as she did. Secondly thank you for sharing her story with me and anyone else who reads it. I am hoping if i cant get people to listen here i will go home and reach out to the doctors who have known me most of my life who understand my medical history as I feel they are probably more likely to intervene. thank you endlessly for your support.
@jamescurfman3284
@jamescurfman3284 5 жыл бұрын
@@IAmYou_N You bet!
@Aggie-ru9dn
@Aggie-ru9dn 5 жыл бұрын
Praying For You!!
@TheAngrySparky79
@TheAngrySparky79 5 жыл бұрын
Darlin, you’re still and always will be beautiful! Keep your head up and press on, gorgeous, and all my prayers and wishes go out to you and I wish you the best!👍
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Thank you
@julyriver8851
@julyriver8851 5 жыл бұрын
It's so good to see you again, Natalie! Sorry I couldn't understand all the medical words but I hope you're going to feel better since you had a diagnosis. Also, let me just say you look even more beautiful with dark hair, girl! 👍 Hugs
@IAmYou_N
@IAmYou_N 5 жыл бұрын
💗 Thank you
@JacobRobAJ
@JacobRobAJ 5 жыл бұрын
Yeah, youtube is good for blocking videos. Which is why i hate posting nowdays. But, i'll be looking forward to any updates that you do post about your health.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Hey Jacob Thanks for sticking around. I would absolutely have to agree with you on the youtube front it's becoming nearly impossible to flinch without some sort of reprimand being handed down.... hopefully it doesn't stay that way. x
@matthewcole9111
@matthewcole9111 5 жыл бұрын
I have it and it sucks. I had to see a chest specific doctor. He knew exactly what it was but told me mine was more visual than anything else so he couldn't recommend treatment/ it wasn't severe enough for insurance to pay for the procedure (nuss procedure). Personally it was just something I had to get over. I took up swimming as an aerobic exercise and started some pectus specific exercises to expand my rib cage and haven't had any issues since. I'd recommend finding a chest specialist and look up PectusPT on KZfaq. It's more bodybuilding focused but some of the tips he gives are pretty helpful.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Hey Matthew thanks for the advice., and your own experience with the condition. I personally have experienced exercise intolerance on top of a host of other symptoms with it essentially my whole life... even 10 minutes of light boxing at home leaves me incredibly breathless with a bpm spike well into the 190s. I used to swim which was helpful initially but now my chest seizes up every time i hit the water so not sure whats going on there. Ideally it would of been picked up when i was much younger and intervention would of taken place then but due to the placement it was never really seen. I will check out your recommendations though :)
@billwieland8497
@billwieland8497 5 жыл бұрын
*HUGS* Sounds like you're getting some answers. Let's hope so! Stay strong. *HUGS*
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Thank Bill, fingers crossed :)
@LucianHodoboc
@LucianHodoboc 5 жыл бұрын
Look up online "taulinoplastia". It's a recent, more modern, type of surgery for pectus excavatum. It is less invasive than the Nuss and the Ravitch procedures. It is performed in Spain and France.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
That actually looks incredible do you know what sort of incision they would have to make to insert and affix the brace. Low key wish it was an offer here but Nuss is the more accepted in Australia unless of course your case is complicated. Thanks for the heads up though, very informative and exciting as a future prospect in the field .
@LucianHodoboc
@LucianHodoboc 5 жыл бұрын
@@IAmYou_N There's only one horizontal incision from one side of the sternum to the other (about 7 centimetres / 2.5 inches), between the pectoral muscles (for men) or between the breasts (for women). There is a small metal plate fixed above the rib cage with very thin wires. The sternum (chest bone) is pulled out and a small screw keeps it in the correct position, attached to the metal plate. There are no internal metal bars like the Nuss has. The metal plate has to remain there for a few years and then removed, but some people get so accustomed to it that they keep it there indefinitely. I am currently trying to raise money to have this surgery in Spain in the following years. It is not covered by health insurance in other countries except for Spain and France, as far as I know. Best of luck with resolving your health problems! If you do choose the Nuss surgery, make sure that you talk to your doctor about the pain management. From what I've read online, during the first week, there's quite a bit of pain, and you should have painkillers, ice packs, and some anti-anxiety medicine (such as Xanax) to help you sleep.
@darrenadolph626
@darrenadolph626 3 жыл бұрын
I actually have 2 step sons with the same thing, the oldest 21 youngest is 17, and it isn’t affecting the much at this time, so hang in there Nat
@IAmYou_N
@IAmYou_N 3 жыл бұрын
Hey Darren thanks for the comment. I know not everyone who suffers has the same level of severity and its much more common in boys. I also don't remember if i made a follow up to this video ... in any case i ended up getting it surgically repaired not without its own issues but am doing a whole load better symptom wise :)
@donaldparlettjr3295
@donaldparlettjr3295 5 жыл бұрын
I wish you the best and I pray you get this fixed. I you meet any haters just ignore them. Always look at the positive and I'll stay a subscriber. KZfaq are becoming monsters and they are only gonna get worse. But keep the faith young lady. Tribulations only make you a stronger woman.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
HI Donald thank you for your support and very sound advice. Hope to see you around :)
@mikh9202
@mikh9202 4 жыл бұрын
Never heard of it, never knew it was a thing, looks just like my sternum. Im 46. No wonder my heart feels like its hitting my sternum when i exercise. Shit, i dont want to have an operation, im a single dad and my boy is disabled. I cant take time off looking after him.
@IAmYou_N
@IAmYou_N 4 жыл бұрын
HI Mik dont worry yourself too much over it. theres a good chance if you've made it this far without it causing significant life altering issues you wont need to have it operated on. The pectus community is about 50 /50 in affect. half of us have severe issues from the condition and most other than having the physical deformity really go on to lead very normal lives with minimal affect. Best wishes to you and your son.
@mikh9202
@mikh9202 4 жыл бұрын
@@IAmYou_N Thanks. Yeah i think ill be ok.
@gregreeve3363
@gregreeve3363 5 жыл бұрын
Hi Nat. I feel for you. My daughter has pectus excavatum (along with a whole bunch of nasty symptoms and problems). Doctors here in NZ make light of it - they say its no big deal, but we know the problems associated with it are not 'nothing'. I believe in the US, they regularly operate to relieve the pressure on your heart and lungs. So don't just lie down and take what your doctors in Aussie say as gospel. Fight this. It can be fixed. All the best and keep positive.
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Hi Greg, sorry to hear about your daughter, though I would agree that once you get to a point with it everything starts turning into "well you've had it your whole life and nothing bad's happened yet"... not ideal when you yourself know its not right. I'm hoping to be referred on to the lone specialist they have in Perth that does preform the Nuss procedure (fingers crossed). Hopefully your daughter finds some reprieve with the condition also, if she ever needs anything or some advice tell her shes more then welcome to ask me questions or have a chat. X Thank you
@MandiiJanee1994
@MandiiJanee1994 5 жыл бұрын
Feel free to message me any time, I have Pectus Excavatum with rib flare like you. We have a lot of the same symptoms, I’ve known forever that I’ve had it, my mum found out when I was 2. My grandad had it so does my dad. My daughter has it too. My rib cage twisted when I was 17 I’m now 25 and it’s currently twisting even more, now that my ribs are moving. My ribs aren’t holding in my diaphragm in place so I’m having a really hard time breathing. My lungs have been compacted all my life which is why I have trouble breathing, I have found all my old medical records that show I’ve been complaining of breathing problems since I was 6 years old.
@IAmYou_N
@IAmYou_N 4 жыл бұрын
Hi Mandi , its really incredible isnt it how quick to dismiss medical professionals are. I think if i had a dollar for every doctor or specialist that insisting it was only cosmetic i would be rich! I too suffered with breathing difficulties. i wish i could say having the nuss procedure done has helped that but in addition to being still underweight due to an oesophageal compression (also from pectus) i caught pneumonia a couple months after the operation which has made everything that seemed brilliant post operation so much worse. pleurisy has permanently scarred the bottom lobes of my lungs and i have scar tissue in the muscle where the bracket is attached. I used ot keep like i was being suffocated before the operation and sadly that has now come back. I really hope that in the future more people in the medical field choose to pursue pectus as a research topic because there are just too many unknowns and questionmarks. I know a . lot of other women who have elected to have the nuss procedure also having complications i.e. bars moving, slipping, twisting and i very rarely hear about it happening to men .. makes me wonder. anyway thanks for reaching out and anytime you need to chat feel free to email me.
@YouGotBernd555
@YouGotBernd555 5 жыл бұрын
1.) Yer hair is black. I love it. 2.) This is crazy! I’ve never heard of this before. I’m sry this has happened to u. I hope u figure things out and get better.❤️❤️❤️🤗
@IAmYou_N
@IAmYou_N 5 жыл бұрын
Thats my natural hair color haha and Thank you, hopefully we're finally getting somewhere.!! 💗
@Jskew
@Jskew 4 жыл бұрын
NAT. Um I don't know how to start this comment. I always call you collar bones because ya love em. I honestly have been praying for you for a bit now. I guess just hope you are well. I miss your smile and your beautiful self. J.
@wendyfoster9888
@wendyfoster9888 4 жыл бұрын
Do you have headaches at all from pectus
@IAmYou_N
@IAmYou_N 4 жыл бұрын
Hi Wendy, i have had really horrific headaches most of my life though most are unrelated to pectus and instead related to my fibromyalgia.. HOWEVER if i was even in a situation where i needed to bend forward, ie tying shoes, yoga positions etc for a period of more then a couple seconds then the further compression of my chest and resulting lack of oxygen would cause pressure headaches yes.
@wendyfoster9888
@wendyfoster9888 4 жыл бұрын
@@IAmYou_N yes thats exactly how i feel. I have a constant headache. Horrible fatigue. Have you had pectus surger yet. You describe the feeling i have perfectly
@IAmYou_N
@IAmYou_N 4 жыл бұрын
Hi Wendy, yes! i had the Nuss in August last year and it improved a lot however i got unlucky and contracted pneumonia and pleurisy 6 weeks post op so now have quite extensive scarring and nerve damage UNRELATED to the procedure or surgical repair. The nuss itself helped increase my lung capacity immediatley post op from 500 ml/sec to 1200 ml/sec i had never had o much oxygen in my body. which helped with a lot , the poor circulation got a lot less, the pressure wasnt as bad i could walk for more then an hour and not get super tired. As with anything though surgery is a choice and its not for everyone but if you do your homework find a reputable surgeon and ask them LOTS of questions... i asked so many my surgeon gave me his email so i could keep asking lol and follow your gut :)
@deborad184
@deborad184 3 жыл бұрын
Hello! Do you have Instagram? I have this same problem, and I have some questions, I would like to talk to you
@IAmYou_N
@IAmYou_N 3 жыл бұрын
hey sorry , i hadn't seen your message. I don't have an instagram associated with the channel no. I do have an email address listed in the about section on my channel if that helps.
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