Відео

I ❤ This!

Thank you to Dr Pacak & all at PheoPara

I look forward to hearing more about the projects by both of these medical researches. Knowing there are future leaders in pheo para care brings hope to all in this community.

So much great information. Thank you!

This was a very helpful overview for patients. Thank you.

Wow, 2 fascinating pheo para stories: one from 1886 and one from present day. Dr. Patel's comments were a great addition to your fascinating and well-told story, Chad! My heart breaks for little Mina and her family. That must have been so traumatic. Thank goodness for modern medicine and the rapid strides that seem to be forthcoming with this rare endocrine disease. Appreciate your hard work to trace the history of pheo para and Dr. Patel's time and expertise to amplify the information.

Awesome program. Very Informative.

Great video! I love the theme!

Great video!!

Hope this video helps to educate and bring awareness to these types of neuroendocrine tumors.

Very informative

Hi there, I really appreciate your lecture, it’s been difficult my daughter now 8yr is suspected of having a pheo we are currently going through imaging, she started with the symptoms at age 5. It’s been a difficult journey because they kept saying she had anxiety but she isn’t an anxious child. If there are any other resources can you please point me in that direction? Thank you in advance.

I have four paragangliomas. 2 glomus vagal tumors and 1 in my left carotid artery and one removed on my right carotid in 2016

I was just diagnosed with 2 paraganglioma’s. I will have them removed on April 17th,2024. How common is this to have 2?

Had this in my lower spine. One surgery later and I’m cured. This was about 15 years ago. Only symptoms from the tumour was neurological pain on the back of my right thigh.

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Hello! Please advise if metastasis go to lymphatic nots but metanephrin is according to norm, Chromogranin A is 222,48 mcg/l now. The surgery was in January 2022. So, what is the approximate prognosis if three knots look like metastatic? Thx

17:16

How can it be made to happen that there is this kind of support in New Zealand?

I just finished radiation for a paraganglioma I have in my right ear, way back in the spiral cochlear part. I didn't know those symptoms listed at the beginning of this video were symptoms of a tumor! I thought they were hormonal! Ha ha ha ha! Thank you for the information. Anyone out there with this, it'll be ok. There are non-invasive treatments (and painless, I might add) and life will go on, I promise.

67 yr old post op adrenalectomy from February here. Cortisol was my bane and the carb loaded diet before this mess started put me at 260. By throwing out the junk and carbs I went to 200 when they found the muscle invasive bladder cancer at the same time as what I thought was the main thing. Anyway after some slicing, three organs yanked, I can feel a sense of normalcy. Now anxiety has become a tool. The excised adrenal seemed to have tamed the beast. To this day I’m not sure if I’m one of these pheo people or not. I would especially like to thank these tireless filters of the muck. They have no idea how much they help.

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My pcp clearly knows nothing about this or he would have screened for it. I already had uncontrolled hypertensive and palpation + Headaches and dizziness episodes for over a year before i suddenly developed symptoms of what can I can only describe as panic attacks, and i even told him i thought i had seratonin syndrome at one point. I am going to ask him for the blood test because i am going under anesthesia in December and it had me really nervous because of these episodes, even before I discovered pheo para accidentally when i was looking up the hospital my surgery will be at.

How do you find a lab that will follow the proper protocol

Fascinating to see how much medicine as moved on since my Paraganglioma in 1981! I lost my entire lung, but still here. I have the Double gene mutation TMEM 127... but I have no children.

IM confused...... so paras are not ever functiinal or secrete catacolamines? What are the symptoms then of a catotid body tumor? Para...

My plasma is normal, urine always around 2.5-3x normal. What gives??

Cushings Disease (pituitary) AND pheo patient here. VUS MAX gene variant in my report. I say it’s significant to my case!!!!! Pheos run in my family but on MOTHERS side

great video explanation!

Where do we find the new SDHD guidelines?

Thanks for sharing your story! I’m sorry it took so long to get your Mum to be respected and treated like everyone else. 😢❤❤

Thank You for all the wonderful tips especially the medical resume

'Promo SM'

Thank you so much for this wisdom. Your advocacy has been invaluable.

Congrats on the 47 Annual PHEO PARA AWARENESS WEEK 🤘🍔 NFG Rules 🤘🍔. Have fun and enjoy the week.

Thanks so much for the insight. Great concept for an alliance. 35 years ago they put me on an Ace inhibitor and a nonspecific beta blocker for hypertension. When I went off the beta blocker because of bradycardia the panic attacks started. About when they made us wear useless masks. I went keto and dropped 90 pounds in a year because I suspected maybe it was my standard unhealthy diet that was the source of my paranoia. No one was trying to kill me. To make a long story shorter they found muscle invasive bladder cancer. More importantly they also found the source of my mental affliction. An adrenal tumor removal with the adrenalectomy has rejuvenated my sense of self. Anxiety is now my tool and no longer my bane.

Info on the McCoy family (Hatfields & McCoys) and their inherited VHL diagnosis: news.vanderbilt.edu/2007/11/01/tumors_may_have_fueled_hatfieldmccoy_feud/ www.nbcnews.com/health/health-news/hatfield-mccoy-feud-blamed-rage-disease-flna1c9474741 www.renalfellow.org/2008/12/18/hatfields-mccoys-and-von-hippel-lindau/ www.wired.com/2007/04/rare-disease-fu/ www.survivornet.com/articles/new-revelations-did-a-rare-genetic-condition-help-fuel-the-hatfield-mccoy-feud-with-biologically-inherited-anger/ www.renalfellow.org/2008/12/18/hatfields-mccoys-and-von-hippel-lindau/

In case the info cards aren't showing for you, here's the information on the episodes we're discussing in this video, including where to watch: www.imdb.com/title/tt0681855/ Quincy M.E., "The Hope of Elkwood," 1980 www.imdb.com/title/tt0638409/ M*A*S*H "Sons and Bowlers," 1982 www.imdb.com/title/tt14048616/ The Good Doctor, "We're All Crazy Sometimes," 2021 www.imdb.com/title/tt0606011/ House, Acceptance, 2005

I'm so excited. I forgot to get a healthy snack.

Love this...one thing that needs analysing is the link between pheo/para with Lynch Syndrome. So far no one has linked them, yet there are a few people in history with Lynch and pheo.

I didn’t know about these kits! I was diagnosed earlier this year! Cute!

Yes the care kits are awesome 😎 Phearless came with me to keep me company post surgery. All the nurses loved Phearless 😊

Thank you dr pacak.

Hi, i was recently diagnosed with a paraganglioma right side of C1. But doctors where i am based are unfimiliar with this condition. (Even ENT and Neuro). Is a endocrinologist the best doctor to first consult regarding these tumours? Symptoms come and go, but they come back worse each time, so i need to act fast i think.

What a lovely doctor really impressed thanks doctor for helping us all

Pituitary Cushings patient here. Was just diagnosed w pheo, have to find it now. We assume adrenal. Two aunts w pheos, genetic testing in July. My aunts diagnosis is the only reason my docs knew to test. Been suffering since 2004 age 17. I am 35. Have suffered a coronary artery fistula w two massive aneurysms found incidentally postpartum age 28, had cardiac cath, could that have been due to this pheo? I was told it was congenital. Apparently I am more rare than I even knew!