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Myocardial Bridge
Приєднався 3 січ 2019
This Channel's purpose is to share experiences of people affected by Myocardial Bridge. Feel free to share to increase awareness. Thank you for your help.
Myocardial Bridge – Alessio’s Updated Story [ENG-ITA] – Ponte Miocardico
ENGLISH BELOW
ITA:
Questa è una storia che dura da più di dieci anni. Tutto comincia con una sofferenza a cui era difficile dare un nome. Poi finalmente arriva la diagnosi, la speranza di una facile soluzione, che viene però disillusa più e più volte con interventi sbagliati. Dopo innumerevoli consulti e ricerche, per Alessio c'è una soluzione. Sostieni Alessio e aiutalo ad avere finalmente una vita normale.
Per donare o rimanere aggiornato link delle varie piattaforme in basso.
ENG:
This story started 10 years ago. Everything began with a pain that was difficult to give a name To. Then finally came the diagnosis and the Hope of an Easy solution. But this Hope has been disillusioned time and time again, with wrong surgeries.
After countless consultations and researches, for Alessio there Is a solution.
Support Alessio and help him finally have a normal Life.
Gofundme:
www.gofundme.com/help-alessio
Facebook:
TokiOFFMIND
Instagram:
cut_the_bridge
TikTok:
www.tiktok.com/@cut_the_bridge
#gofundme #cut_the_bridge #heartsurgery #heart #hearthealth #myocardialbridge #unroofing #support #iene #godfundme #helpme #helpmeplease #helpothers #pontemiocardico
ITA:
Questa è una storia che dura da più di dieci anni. Tutto comincia con una sofferenza a cui era difficile dare un nome. Poi finalmente arriva la diagnosi, la speranza di una facile soluzione, che viene però disillusa più e più volte con interventi sbagliati. Dopo innumerevoli consulti e ricerche, per Alessio c'è una soluzione. Sostieni Alessio e aiutalo ad avere finalmente una vita normale.
Per donare o rimanere aggiornato link delle varie piattaforme in basso.
ENG:
This story started 10 years ago. Everything began with a pain that was difficult to give a name To. Then finally came the diagnosis and the Hope of an Easy solution. But this Hope has been disillusioned time and time again, with wrong surgeries.
After countless consultations and researches, for Alessio there Is a solution.
Support Alessio and help him finally have a normal Life.
Gofundme:
www.gofundme.com/help-alessio
Facebook:
TokiOFFMIND
Instagram:
cut_the_bridge
TikTok:
www.tiktok.com/@cut_the_bridge
#gofundme #cut_the_bridge #heartsurgery #heart #hearthealth #myocardialbridge #unroofing #support #iene #godfundme #helpme #helpmeplease #helpothers #pontemiocardico
Переглядів: 201
Відео
Update Steph's story - Living with a Myocardial Bridge
Переглядів 2,1 тис.5 років тому
Update Steph's story - Living with a Myocardial Bridge
Myocardial Bridge- Paul's Story
Переглядів 9 тис.5 років тому
This is the story of Paul who luckily, after having discovered his condition, had the surgery at Stanford Hospital.
Myocardial Bridge - Alessio's Story [SUB ENG]
Переглядів 12 тис.5 років тому
This is Alessio Scorrano’s story who started developing symptoms in 2013. In 2016 he’s been diagnosed with Myocardial Bridge. He had an Unroofing surgery in Italy which wasn’t successful and right after, a fixed stenosis had been found. Then he had a coronary Stent and after it, it was also discovered coronary spasms and a Dysfunction of the autonomic nervous system. At the moment he can’t walk...
Myocardial Bridge - Stephanie's Story
Переглядів 2,3 тис.5 років тому
This is the story of Stephanie, 58 years old who started having symptoms since 2012 and she's been diagnosed with Myocardial Bridge in 2016.
Can we get an update? Was the surgery successful? How is he doing?
I have myobridging, for years it hasn't bothered me , i was diagnosed in 2012, i turned 50 this year, ive been having increased chest pains and having to use my rescue nitroglycerin , i made appt with cardiologist, im nervous 😢, pray for me please, thank you🙏✝️✝️
Hey I am from India can I share my experience, I am suffering from 2019 August, and in India docters are not experienced about this situation.
Suffering from 5 years 😢 that's really painfull and even more frustrating when you can't live a normal life. Especially from the age of 27 yrs. Sometimes I think why I am living. In India docters are not experienced about this situation. I got to factory and I am in managing operations depart for which I need to walk in four story building all the day, which my health does not allowed, it is effecting my work. All day pain and No Energy. That's really 😢 sometimes I scared how I ll fullfill my kid's dream
Are you still there?
😢 i M also myocardial patient
I have the same problem. No results with medications.
Then whts helps you?
Quanto costa cuesto intervento chirurgico in grecia?
I am recently diagnosed with a MB...LAD 70 blockage during systole compression..what meds did they prescribe for you prior to your open heart surgery
Thanks, I am soldier bd army, I am affected myocardial bridge plz sazzed me
My wife had no symptom episode so far at 60yro. She just done her first heart CT last week found mild MB in dLAD. Plus moderate to severve sofl plaque at proximal LAD suggesting clinical attention +/- PCI. What your comment?
I. Have this problem too. I wish you the best
I would like to refer you to Dr. Roger Elmer in Las Vegas, Nevada. He is amazing!
Post mortems suggest that up to 40% of people have a myocardial bridge.
I was just diagnosed this week with Myocardial Bridge. I am experiencing extreme shortness of breath after the angiogram & before too. I was experiencing spams back to back out of the blue & sharp pains.. It has affected my tastebuds or my pallet. I do not have an appetite to eat at all What can you share helpful with me about this Good for you that you got your life back!
God bless you, be praying for you.
Update us… i hope you are alive and doing well
hi in your case i see a cut mark on your chest can u say why is that
Stanford where???
I am extremely sorry to hear about your tough journey!!!!! I too suffer from this disease and it’s extends painful and life affecting! I’ve been doing some research and found another person who cured his myocardial bridge. See link: ua-cam.com/video/EqPOSB0p0lE/v-deo.html I hope his journey helps you all: I will Attempt to do the same Godbless everyone and I’ll keep Praying for a better cure than invasive surgery
I used to smoke for 25 years, I attributed all my symptoms to that. Just found out about my bridge after heart attack symptoms brought me to the ER. They did EKG and Cath and found it. Thankfully no plaque. Thanks for posting this. I hope you know Jesus, praise His name.
I was just diagnosed who is having a bridge today I've been having chest pain jaw pain very fatigued the doctor put me on a beta blocker or something like that today the doctor act like it would be okay but this makes me worry I hope you get better
I wish I would seen this video before April 13th. I hope you’re doing well, and you’re healthy. Praying for everyone fighting with their doctors for more testing! Especially, for those whose doctors didn’t believe your loved one until after they’re dead.
Thank you so much for this!!! I have been on 5 different medications for my bridge with no luck:( my cardiologist here is referring me to Stanford for the unroofing! A year ago when they mentioned this might be a possibility I was terrified! But now having the feeling like I have a knife between my shoulder blades and inability to get deep breaths all day I am ready!! So glad I clicked on your video, I go to Stanford in April and now can’t wait!! Thanks
How did it all go??
These are my symptoms exactly! Getting ready to go to a chiropractor the pain can be so bad but now I have pause!
Hi I have been dealing with this on top of Coronary Artery Disease. My LAD was blocked 80% and needed to be stented. After the stent was placed I was still having the chest pain and in the same place and was recathed 2 days after my initial heart cath. That's when they found out that I had the MB.They told me we would have to try to medically manage it first and then if it couldn't be managed this way then the only other option would be surgey. Well I am ready for surgery. I have 2 stents in that area and it is very tight and have been trying different medications which haven't helped now for almost 2 years. I get my chest pain and shortness of breath , palpitations, i get pre-syncopal episodes so often now. All of which have increased significantly over the last couple of months. I was just admitted the other day into the hospital because of severe chest pain etc. I am hoping that I can be seen at Cleveland Clinic and have the surgery done and that it will bring relief. I have done some research and they recommended the surgery over stenting in people that have blockage because it would cause more issues. Thank you for sharing your story with us.
This is real. My dad has it and no one knew. Years he said something was wrong and they kept sending him home saying panic attack. They found it last week finally.
I tried to find Paul on Facebook but could not, my 19-year-old son was just diagnosed with a myocardial bridge, would like to talk to Paul….??…..
I invite you to join our wonderful support group for myocardial bridge
How can i join ur group
Hello, everyone. I’ve an myocardial bridge which is 15mm and complete. I’ve an CT Angiography. They said there is no blockage in vein and no meaningful narrow between systole and diastole. After that I’ve done Nuclear stress test. Nuclear stress test resulted, there is no problem with blood flow to my heart. But I’m still having symptoms. I’ve pressure on my left shoulder and there is a numbness on my left hand. Sometimes I feel, numbness on left side of my jaw. In a day life, when I stand and slow-walking, I feel painful pressure on my chest, 4-4.5 over 10. In addition to that, I feel dizzy while I’m standing. I’m a little fatigue in a day, can’t find energy to do exercises. I’m living in Istanbul/Turkey. I got contacted with one of the best cardiologist in Turkey and his name is Afksendiyos Kalangos. I showed my reports and he said not to worry about my myocardial bridge because reports show that, I’m not feeling these thing because of MB. But why I’m having these symptoms?
God only knows
Merhaba bende turkiyedeyim. Nasıl oldunuz. Sağlığınız nasil
Bende de aynı hastalık çıktı. 20mm yüzeysel dendi. Nasıl oldunuz acaba? Bir yıldır bunu çekiyorum ve ne yapacağımı bilmiyorum.
Hi Steph, How you doing now, can u tell me about the symptoms
Hi Paul, thank you for sharing your story. I couldn't find you on Facebook. Could you tell me the name of the doctor you sent your records to? Thank you! Nancy
Has anyone found this Paul I want to message he about some info!!
I invite you to join our support group for myocardial bridge
Hi Alessio - thanks for sharing your story. How are you doing these days? what other treatment did you have since this was posted. I got MC (1st noted 10 years ago age 44 but no one really knew what it was nor did it have a name) but my symptoms went away so i just carried on as normal.. last 6 months i got new symptoms (dull chest pain / and a hard thud to my heart when running about 3 months back / and the odd heart spasm). Today the cardiologist i went to says i have MC and my symptoms may be a result of this - so i am started on some medication for the next month to monitor. Great i now know what it is called so i can do more research on it. Hope the medicine works but it seems like long term 'unroofing' may be the answer. Still early days of investigation. Hope you are doing well. GRAZIE
Hi dear I met a surgeon of heart about myocardial bridge he said to me do more walk 15 minutes faster walk for new vein devolaped
thanks for sharing the experience - much appreciated.. My MC (didnt have a name back then) got discovered about 10yrs ago in Singapore (i was 42 then) via a angiogram and they really werent sure what it was / how to treat etc other than a complicated artery swap out and there wasnt enough evidence to determine if that was the cause of my 'out of breath' while running only 400metres (i do a lot of running). i was in a really stressful job back then so i fortunately was able to step out of work and retired and the stress went away and everything went back to normal after a few months... over the last 18 months i have been getting very minimal dull chest pain now and then. 3 months ago at the 15km mark on a trail run i got a real sharp thud pain from my heart/chest and i recall a few sudden spasms while in bed over the past few months too. I had all the tests done (ECG/xray/blood etc) and everything normal so just took some muscle relaxants for a few weeks. Its not really improved much (and the dull chest pain seems more frequent) over that time and had the basic re-tests done etc. Today i met with a really good cardiologist (i now live in Thailand) who finally gave me that name of Myocardial Bridge so i can start doing more online research. Today i start on some medicine for a month and see if that helps manage it - hopefully yes - but it is nice to be able to zoom in with more knowledge on what the issue is likely and seems if some form of surgery is needed that hopefully it is 'unroofing' as opposed to a full artery swap out.. I am still running and cycling and playing tennis a lot - so i probably need to tone some of that down while i sort this stuff out... interested to hear if anyone else has very similar symptoms and actions they are taking.. much appreciated... cheers
Thank you so much for this vid!!
Thats good, u r living a normal life, I also had the same issue and recently 2 days ago I was diagnosed the same problem, it's 3 cm long, I am taking medicine
Hi, how you doing now
How are you know?
Hi Paul! I had a cath done yesterday only to confirm i have a myocardial bridge. Surgery scares me. What helped with your decision to opt for it
For my treatment
what type of procedure do you do you have I listened to your whole video but I did not hear you talk about it I was looking at the myotome as a treatment.. also now that it's three years later how do you feel about it how does your sternum feel and can you exercise freely without anyting
I just found out that's what's been plaguing me for 20 years I'm 46 years old and have been exercising my whole life I even did the ultimate beast Spartan race but occasionally I get ischemia that won't go away I think it's more stress related but after a soccer game this Saturday I didn't EKG done at work which showed ischemia the called the cardiologists sent me to Cath Lab and that's when they discovered my LAD was being squeezed because it was running under my muscle tissue. For years I always thought there was something mechanically wrong with my heart sometimes when I was doing things I felt like I just could not get it to get going
Mb %?
@@Taybay80 yes I have a myocardial bridge I think it's about 25 mm I haven't gotten the cardiac CT yet but it's significant enough
My coronary angiogram has 70% compression. Did you have angiography?
very similar experience it seems - - i just posted my experience above... when 1st discovered about 10 years ago it was suggested to keep my heart rate <120... yeah good luck with that i thought!!! but i am now at a point where i need to get it sorted - seems a lot more knowledge about it now which is good.
IT IS REAL BROTHER - I HAVE THE SAME THING BUT HAVE DONE NOTHING WITH MINE // GOD BLESS. YOUR POST AND RESPONSES HAVE SHOWN ME I AM NOT ALONE. I WAS THINKING I WAS ONE OF FEW AND WOW// SO MANY OF US OUT THERE.
God bless you Stephanie! I hope you get surgery soon! I have talked to a person who had surgery and he said he felt like a new man! Said his energy level went through the roof!
@Sergio Galindo sorry only saw your comment now. Did he have surgery in Stanford University Hospital?
What type of surgery did he get?
Hi paul, thank you for sharing this with us. i am 54 yrs old and i knew that since i was 12 that something wrong with me. I always felt anxious but in my early late 30's had the "anxiety" attacks. went multiple times to the ER. finally when to ER on when i turned 50 was hospitilized for 2 days and bc i am an RN they brought in a cardiologist did an angiogram on me but still did not find anything. I was released and had a cardiac catherization and that is how they discovered. i had all the symptoms you had , shortnes of breath, dizziness, neck spasms which my cardiologist said i just had to live with and they were so painful. but thank God for you sharing bc most of the cardiologist in NY or cardiologist period don't know much about how to treat this. which dr did you send your record to at stanford and which Paul giordano are you bc there are two on face book
@Dulcine Olivieria you should join our support group, we have all the up to date information on cardiologists cardiac surgeons etc
Man that's the same story as mine and now 46and I've been dealing with this since probably my senior year I've always been able to exercise really hard but sometimes I would get really pale and it's like I just could not get my heart to start going it was always my limiting factorone of the weird thing is is I feel like the more in shape I got the worst my heart got I felt like it was strong but it was doing this weird thing and finally today they found out I had a bridging in my LAD
@@stephaniefenelon what is the support group called?
@@nancynorton320 Hi Nancy I think I just approved your request to join us
Just saw this and I was diagnosed with a bridge last week. I am 54 y/o and mine was caught in a cardiac angiogram after having chest pain. Put me on a beta blocker but I am still having chest pain and pvcs. Please, I would love to get into this group because I don’t know wth is going on and I am scared to death.
I've been suffering with Myocardial Bridging since 2014. It's one of the worst issues I've ever faced in my life let alone the uphill battle with cardiologists along the way. I personally went to Standford to have openheart surgery for it and unfortunately, it did not work. I am still having issues to this day. I will admit that for a year after I felt like I was doing a little better but I ended up having pericarditis and pleurisy which put me back in the hospital. I had one of my worst episodes ever the other night and had an ambulance come take me to the ER at 1am. I lay on the ground gasping for air and clutching my chest as a family member called 911. For anyone who suffers from this, my heart goes out to you and especially to this woman above who knows exactly what this horrible heart defect brings.
@Strider how are you doing now? Hope you are doing better
Paul, I had the same exact surgery you had at Stanford. I flew to California in 2018 and had my unroofing procedure done. Unfortunately I’m still having symptoms to this day and I’m just curious have you had any symptoms whatsoever or are you completely healed? Any detailed info you can give me would be great. I can say that I was told I had multiple bridges but the main larger one was deemed the issue. They explained I had endothelial dysfunction from that artery loosing its elasticity over the years and could be the cause of my current pain. I’m glad you felt better after the procedure. Again, any updates would be appreciated. Are you still doing well, completely pain free or do you have issues from time to time?
Strider I've put up a comment under my video. A lot of people are doing really well after unroofing surgery. Sorry to hear you are still struggling 😞
@strider I'm so sorry to hear this. I recommend that you join our Myocardial Bridge Support Group on Facebook where you can communicate with people who have had unroofing surgery
@strider thinking about your situation, I feel that the bridges which have not been unroofed could be causing you problems. We are seeing measurements are being underestimated and I wonder if this could be the case for you. Did you ever think about attending University of Chicago. Dr Balkhy is an amazing robotic surgeon and so skilled at unroofing.
@@stephaniefenelon I actually did the unroofing procedure at Stanford as a matter of fact, I did not have the other de-bridging surgery other areas/hospitals perform. I believe de-bridging is the correct term for the other type of surgery. My unroofing was called a success and although I can say I'm not as bad as I used to be, I still have issues and do deal with chest pain/anxiety/shortness of breath. My cardiologist in St. Louis, Missouri, who was the one who actually diagnosed my myocardial bridging through a heart cath procedure, told me at the time that the myocardial bridging was the cause of my pain/symptoms back in 2014. As of 2022, (after the unroofing procedure I had at Stanford back in 2018) My cardiologist did a few scans of my heart and now he says that he believes the pain is in my head or is simply anxiety related. This of course makes me extremely angry and leaves me feeling defeated. It's like someone telling me I'm having anxiety and am not actually feeling the pain in a toe I just stubbed. I know exactly what heart pain feels like as I've had it for many years. Honestly, I just think the guy is out of options and doesn't know what to do to treat me at this point. Sorry for the late reply, I somehow went back to this video and just saw your comment.
@Strider are you on our support group? I highly recommend you join. I know people have problems with endothelial dysfunction after unroofing. It doesn't go away overnight and can take some time. I agree with you about the pain. You know your own body. I'm sorry you are still having issues. There are people on the support group who may be able to advise you.
I went to Stanford in 2018 and had this surgery for Myocardial Bridging. Unfortunately, it did not help. While I was down there they also diagnosed 2 more bridges that I had which were much smaller in size compared to the bigger one I had surgery one. I developed pericarditis and pleurisy after my surgery/returning home and was essentially bed ridden for an extra 3 months. It’s been two years and although I can say the severity isn’t as bad as it used to, I still struggle almost every day. What they told me was that I had endothelial dysfunction or in layman’s terms that my bridging had caused stress on my artery and it may have lost its elasticity just like a rubber band does. In this case, the artery walls are not smooth/flexible as they should be and vasospasm causing pain still. Therefor, even though the artery was dug out of my heart muscle, it is impaired and I’m assuming this along with the other bridges I have add to the issues I have to this day. Thank you for your story though and I wish you all the best. I know this comment is late, please let me know how you are doing. I’d like to hear an update of any changes provided to you and your current health.
Just got diagnosed. Having all these symptoms, but doctor also denies that this is the problem.
Try to find a cardiologist who is educated in myocardial bridge. You need a cath with dobutamine challenge IVUS diastolic FFR or IFR
I found a lot of P. Giordano. Which one is you? Can you put a link who found him please?
Exercise cause myocardial bridge.
How ? Can you tell me more please ??
@@salahrached8442 by putting pressure in myocardium
Do heavy weight lifting cause myocardial bridge or it is a born disease?
@@mcpp6692 but it cause myocardial infarction and bcz of that myocardial bridge uses to create problem other wise it will cure or couldn't occur at this little stage 24 year.
You were born with it. It is a congenital heart defect
Thank you so much for great video! I have had same symptoms for years and finally today I was diagnosed with myocardial bridge.
How are things going on ?