MY TUMOR STORY TIME PART 3: PHEOCHROMOCYTOMA TREATMENT AND SURGERY
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- čas přidán 9. 05. 2017
- A lot of you have asked me a lot of questions about my tumor that I was diagnosed with, and had removed in 2011. This is the second in a three part series talking aaalllll about my tumor. Sorry it's so incredibly long. I wanted to be thorough.
When I got my diagnosis I was unable to find a survivor of this type of tumor, and I had no one to talk to about it, or ask questions, and I really could have used a happy ending story from a survivor as I approached an incredibly dangerous surgery. I hope this series can help even one other person who is going through this struggle, or inspire those of you who need motivation to keep going. Keep going. Keep asking questions. Keep looking for answers. You're not alone. ♥
Intro music by Alexander Osborn: / indie-rock-showreel-music
www.alexanderosborn.tv
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Katrina Sherwood
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Hi, I'm Kat, and I make lots of DIY videos, about everything from DIY jewelry, home decor, gifts, and crafts, to Gluten Free recipes, No-poo hair care, DIY hair extensions, how to make sugaring wax and arabic wax for natural hair removal, and how to make a bracelet out of a toothbrush. Here you can watch videos about friendship bracelets, whitening your teeth with activated charcoal, or even skip on over to my second channel for Story Time videos and vlogs!
Shiny, Pretty Things! - Jak na to + styl
You’re seriously making me cry. I live alone and some nights I’m afraid to go to sleep. Sometimes my episodes will wake me up from a dead sleep about 45 minutes after I go to bed. Blood pressure sky high, headache and tremors. Your video popped up on my CZcams today for a reason. That’s how God works. ❤🙏🏻
I can relate too. But keepin the faith and trustin god ✝️
I’m 62 and had been living with these symptoms for 15 years. Tired of hearing people say I must be nuts because no doctor could figure it out. I couldn’t walk in cold air without my heart palpitating. Went through all the same medication preps and side effects. It all sucked. I had the surgery a week ago and I am so excited for my new life.
How are you feeling...I just got mri results that I have an adrenal tumor. Do you feel like your emotions and clarity are better. Also if you had weight problems, are those resolving? Hope you feel better than Ever before!
I just got diagnosed with a pheochromocytoma. Your story sounds exactly like mine. Its already been a long road. The depression and anxiety are so intense. I'm just so tired of all of it
I haven't been dx yet bc covid and loss of insurance but my mri showed a tumor on my adrenal gland so it's a given.
Do you feel like the chemicals swooshing around from it make you have spiritual experiences?
Lynne again Praying for you 🙏🏻❤️
Praying for you ❤️🙏🏻
@@lrm52283 a tumor on adrenals could also be conn's syndrome/hyperaldosteronism. It does have some similar symptoms, just so you know.
Yup covid is causing problems for me too but it's between covid longhaulers and adrenal tumor or both.
One thing I realize is that when you go through something like this the only person you can be sure of it's you. Thank you for sharing your journey.
Three years ago I found I have hypertension out of the sudden..I have been healthy all my life except some depression and anxiety episodes..This time I felt something is wrong and I pushed hard to get the reason.Finally they found elevated cortisol and norepinephrine in my urine.Two years ago on MRI suspicious adenoma on my adrenal, but they somehow missed 5 cm tumor in my mediastinum then...Last week incidentally I have found it on routine checks..They suspect external pheo called paraganglinoma. I have been living in a hell since then..and I am really scared.I don’t know what to expect, I am scared of surgery too. I found your story and it gives me positive vibes and motivation.Your personality is really amazing!Thank you for this video!
I have one on my right adrenal,scared too you are not alone and you will be in my prayers
I can’t believe this, you have described my entire life,with each of these videos. I’m currently in hospital waiting for my MRI, I distract myself with comedies it’s bizarre how accurate your experience has been. Thank you for sharing your story. It’s kind of nice not to be alone which is insane because I have been for the past 4 days. Lonely isn’t even the word.
Watching romantic comedies and CZcams vids on crafts and fluffy stuff is exactly what I would do too! I love Doris Day movies from the 60s - they are always light and bright. They are my anti-depressant.
As far as people not visiting, I think it is because they didn't really know what you were going through. It was huge and unless someone has had a similar experience, they just can't imagine. "People aren't very good at other people's pain" is a quote I heard recently that really resonates..
Thanks for documenting all this - I know that it helps people going through a lot of different health crises.
I'm so glad you Survived😁😁😁😁😁😁
Ive watched part 1, 2, 3 and mow I'm about to watch part 4
Stasia Sgarito, I watched 4, THEN 1, 2, and now 3! I am in LOVE with her personality!!
Mayumi Kakizaki she's got a great personality!
Yeah, ...you always think if you ever got sick your family and friends would be supportive, but it’s usually not like that. Everyone just disappears. It’s frightening to face one’s mortality. It’s also a very lonely place. And just when you need support the most... there’s nothing but continual pain and misery. One is lucky if they have a few friends call or send a card.
That's incredible, I can so relate to your story, it's almost the same for me. Thank you for sharing your story. Waiting for my surgery and want to be over with this situation
Amazing story. You are such a strong woman!
Thank you SO much for sharing your story. I live in Antioch CA and they are checking for this type tumor! Right now they are telling me the same thing. It’s so rare you probably don’t have it. An allergist suggested it. I begin my urine collection tomorrow. I have had illnesses and mental problems my whole life! My blood pressure recently skyrocketed, hot flashes, sweating, heat rash, headaches, back pain for sometime now, constipation, weight loss....and many more just as you described! No one hopes they have a tumor but I would be so happy if they could finally figure out my problems and I can stop feeling crazy! The “hulk” reaction has been a huge lately!
Teresa Harrington what happened.
So brave. Thankyou for your honesty.
iv been going threw all this over 6 years now,and all the things you went threw to get help is exactly what happened to me,it took so meany doctors before one finally heard what i was saying,im still not out of the woods yet,and because i didn't get help for so long,my tumors have doubled in size,and are on both my adrenal glands.i cried when you wer saying how you felt,coz its how iv been feeling all these years,wishing i could feel healthy again in life.its been a releaf to watch your videos and know someone out there who knows 100% what this is like. thank-you for sharing ,thank you for the hope that i might be able to make it threw like you have.im glad you can have peace of mind now and have more happiness in your life again.
you're a hero to us all (regular folks and medical professionals).
I’m sorry you went through this. I hate this kind of thing that stresses a person out way beyond what anyone should have to endure.
* Questions at the end*
Wow, I can sure relate. So glad you are now on the other side of this and are now enjoying your life life as you deserve!
I just had mine removed (Right adrenal gland). I had one episode where my bp would rise into the 200's and lucky me, I had covid at the same time and it landed me in the ER AGAIN and my heart was overworking and pounding for so long that it gave me heart failure (which, thank God I have fully recovered from). I, like you, would also get paranoid driving. One time I thought I could drive myself to the hospital. Didn't make it. I would see other cars on the road and it would make me panic and I would think the worst is about to happen. As for nights, I would be ok during the day managing with meds, but when the sun went down and it was time to go to sleep, I would dread it. It make you feel hopeless and alone and that help is nowhere near if anything were to happen.
My Endo put me on Doxazosin for 2 weeks and that was another rollercoaster ride that I couldn't wait to be over! Finally I had mine resected and now I'm off all my bp and anxiety medications. I truly feel like I was given a 2nd chance at life. I'm so glad that it was found on a cat scan and it was diagnosed before it took me out. I feel like another one of these episodes and it would have done me in.
I have had some minor complications after surgery. I'm at day 6 after the surgery and at day 3 I would get these chills where my body was shaking uncontrollably and I would run a fever. I went back and they just had me on tylenol, pain killers and muscle relaxers for the fever and pain from the incision sites.
I wanted to ask,
1) Did you or anyone ever experience this, post-op? (tremors/fever/chills)
2) Did they remover your whole right adrenal or was the surgeon able to just remove the pheo?
So glad you had such good doctors. Thank you for sharing. I have something similiar and still to be operated...you gave me hope. Blessings
Thank you for sharing your story. In 2018 I had an MRI for other purposes and was told they just happen to find a tumor on my left adrenal. I was seeing a gynecologist for other issues, and he told me to follow up with an endocrinologist. I followed up with an endocrinologist who told me that it was probably nothing these tumors are generally nothing. She did not do any tests. She did nothing. Five years later, I’m listening to everything you’re saying, and even though I am of the age of being in menopause, and some of the symptoms could quite possibly be menopause. I am also experiencing excruciating pain on the left side of my back, it comes and goes but heart palpitations Happen all the time, anxiety, panic attacks, the list goes on. We are our best advocates. I am determined to follow up with this now with someone who will listen to me. Thank you. 😢
I'm so thankful for you making these videos.. I'm going to be getting an ultrasound on my right kidney on the 9th July 2020. Been having a lot of back pain with allot of muscle spasms anytime I stand up to the point where my legs start to shake. I have a back injury as it is. But after talking to our pain management Dr he looked very concerned and said for my family Dr to please get me in for an ultrasound done on the right kidney. I have had several of the same symptoms you have had. But I ended up with hypothyroidism and now type 2 diabetes.. my hot flashes are rediculouse sleep apnea. I can feel so overwhelmed at times I don't want to even look outside. I'm so happy your happy and healthy ❤️😊. Just so sorry you had to go through all that 💔...
Hi, first of all I'm sorry about everything you went through and glad you are better and thank you so much for these very informative videos. I'm now being tested for this, I had a mri that was ok, I have had the 24hr urine test for Vanylmandelic Acid and that was ok but they said it might be skewed due to taking propanolol, they now want me to do a ct scan with contrast but I haven't had any specific blood tests yet, shouldn't I have that done before? What is amazing is that it's supposed to be such a rare tumour and yet so many people are commenting on these videos that have it.
you are amazing person
it is so beaitiful to see some one that survaiv now it is motivated to do youtube videos about your problems that you haved in the past bicause alot peaple wil be scared to tell other peaple about that
I’m 53 getting ready to have this same surgery. Took 7 months to get the dibenzaline approved for my insurance to pay I have 2 of these tumors took years before they were found because I have lupus and they associated my hypertension with the lupus until I ended up in icu for 6 days with a blood pressure of 280/230. Finally an oncology surgeon along with a nephrologist decided to get a ct scan of my kidneys finding the 2 tumors along with the 24 hour urine to determine the exact kind of kind of renal tumors I had I’m still working 60 hours a week and some days get really rough because of the medication. I just want this over with
Hope you're okay. 💐
You are lucky. My wife was diagnosed with it and they cut her all the way around. From left side of spine to the right side of the abdomen. She has a scar the shape of a smiling face all across her abdomen. She had her surgery in 1989. She damn near died from the tumor. Then from the surgery. Then from the infection that set in from having all her organs removed then put back in. Not like today when they just do three little incisions to do microsurgery. She, because of all the infection, the surgical incision and the many many many times she had to be hospitalized to rip it all open and pack the incision now has a four inch thick scare all the way around her abdomen. You are extremely lucky. This is in fact a very rarely dossier, very life threatening tumor. Even when they are benign. Today they have discovered that 90% of all high blood pressure cases are caused by this very thing going undiagnosed. Which is sad considering it can be discovered by a simple blood test.
Your story is my story, from the symptoms, to the years of misdiagnosis, to the Stanford surgical team, to the phenoxybenzamine, right down to the anesthesia awareness and PTSD. Uncanny to hear the similarities except that mine was diagnosed in 1983 and there was no MRI so exploratory surgery it was. 39 years later I'm healthier than ever so you have that to look forward to. God bless
You are really scaring me with the anesthesia awareness stories. I cannot
I have been diagnosed with a Pheochromocytoma. It was an incidental find through a ct scan. I want to add that there are plenty of Doctors around the country who can do a laparoscopic adrenalectomy. I found the doctor who performed the very first one in Kansas City. DO YOUR RESERCH! Stanford and Mayo aren’t your only options. Same with the expensive alpha blocker you were prescribed. Thanks for posting your vlog. Glad you got you life back!
Jude Schaffer I am very worried I have this. It’s horrible knowing something is wrong but not knowing.
I think at the time of this video was a few years ago. This poor girl. I’m hoping I do not have this but if it isnt...them wtf is it.?.
Kevin Snyder go see an endocrinologist. Call around until you find one that will see you. You have to do all of the blood and urine tests to determine your condition. I’m getting my tumor removed on Monday because I didn’t sit on my hands. Best of luck Kevin!
Thank you for this series! In late January, after 2 decades of looking, an MRI showed a mass on my left adrenal gland just as I lost insurance and this covid thing started.
I definitely have everything you describe accept for the high blood pressure, mine has been low but maybe bc I rarely get out of bed.
I hate hearing my blood in my neck, it's unnerving in a way people other than us can never understand.
This video helped me laugh and feel less scared so I really appreciate you sharing!
The blood pressure I feel in my head and neck is insane
When I was diagnosed with my thyroid/lymphatic cancer and my pheo all of my friends were away at university except for my best best best friend in the whole world...who suddenly out of nowhere decided to move to the other side of the country a few weeks after my diagnosis and I never heard from her again except for a post card that she sent me saying that she was sorry and good luck. Also, your surgery was on my birthday :)
She was not your best friend then. Sorry you had to go through that
btw i lo e your videos and i love you
you have inspaird me to go and live mu life
and to go and reach for my dreams
I am going through a pheochromacytoma work up right now. I have been battling your story to a T. I had a CT scan that showed the pheo. I was wondering if you could share who you went to for surgery? I am currently in CO, and hand not had the greatest experience so far.
I am diagonised with a Cerebellar Cyst 1" and Haemangioblastoma..Operation is after Holiday season
Amazing!
great story thank you
shane told me to come here
OMG. You sound like me now. I just decided to have the surgery. I just need to find a great doctor.
Thank you I had two pheos❤
My endocrinologist found other tumor in my thyroid they were biopsies and the tumors were non cancerous. Is a good I dea to check it.
Your story sounds like mine. Just had an ultrasound and it all came back normal. 😥🙄 I hope they decide to do a ct. All my labs are perfect but My BP is always high. Like I went to the ER and it was 220/120
I am on phenoxybenzamine and one other medication. I only take one twice a day as my BP drops when I stand up so if I add more I would be on the floor. They want to up it before surgery though
hi, can you summarize all your medication...
What are all the symptoms of this an where has everyone's tumor been found out on they're body?
ur a fighter
Could u plz let me knw does it cause any infertility in females after surgery??
What is the survival rate of this tumor
The after surgery was easy. I did not have issues. A month after that I started to have symptoms of Addison’s disease. I have chronic insomnia. Almost no one came to visit except for my brother and one friend.
Awwwww it's too bad that they couldn't give you a sedative for that month, to ease that anxiety. I'm 61 years old & currently going through work up for either the adrenal tumor I have or the possibility of Carcinoid. Symptoms for the past 4 years.
Susan, were you diagnosed??
I have Pheochromocytoma, I take the same medication. I just turned 16. My surgery is on the 21 of June. Do you have any advice for me?
So sorry I'm just seeing this! Well, take it easy. Be patient with yourself. Try and be conscious of when your body is craving the adrenaline, and try to talk yourself down.
Ashley Anderson how did your surgery go?
Praying for you 🙏🏻❤️
Hiii how are you now???
I have never felt so heard in my life. Im just so alone and afraid.
I have one on my right adrenal gland, I'm scared and don't have insurance of any kind
Please keep sending me pictures and lectures ❤
That mother trucker @ 19:57
That beast caused you so much pain & suffering.
Did you also have Vitamin D deficiency, anaemia, Vitamin B12 deficiency as well as every other bloody thing because I’m going through the exact same thing and I’m waiting for my Endocrinologist tests but the 24 Urine test was positive that my tumour was active and pushing adrenaline so much round my body and my blood pressure was through the roof to the point i was once walking to my home and my heart started beating really fast and felt like my heart would drop through my chest to the floor then I would get an electric shock in my head and started shaking and my vision started to go like when you would switch off an old tv so from the four corners it would be black and slowly fading to black into a small circle and I feel to my knees and thought omg I’m having a heart attack. Anyway put on blood pressure meds, anxiety meds, I had my CT-Scan done and they said yep you have a tumour on your adrenal gland which explained every single symptom I was having. So now I’ve had my bloods done with the dexamethasone and they test it and it’s positive as well for the high cortisol running thru my body so now I’m just waiting to have my plasma test done at Endocrinology and I will see where I go from there but thank you for your video, I have had every symptom you’ve said from not a solid stool in years to the scared to fall asleep because you feel you are going to die and won’t wake up, laying in bed and feeling your heartbeat that fast that your partner even comments that they could feel it pounding through the mattress. Only symptom I didn’t have was obviously the ovarian cysts as I am a man but fingers crossed they get this thing out of me and my symptoms that I’ve been told for many many many years that it’s just depression and panic attacks while all along I’ve had this tumour. My ECG also said I had a heart attack but age is undetermined so yeah I have damage to my heart, blocked branches and dilated ventricle all caused by my body pumping to much hormones through and making my heart work overtime. So again thank you for your story ❤
I have surgery on the 13th, I can feel my heart beating in my head and I had pain in my legs and arms and lower back.
Now I'm having Surgery on the 27th because the anesthesiologist didn't do his Job the first time they would not complete the surgery I'm just ready for all this to be over.
How did it go?
When they first found the tumor what stage was you in ?
loriana91 it’s a benign tumor
which food is allowed if you have pheo? Internet is so contradictive, I hope someone could help me, thank you! ^^
I had a phiocrocytoma taken out in 2006. I had palpitations, I felt nervous, I had horrible stomach issues and I felt like I was drinking tons of coffee! I felt super tired and exhausted! My diagnosis was accidental. They did a ct of my abdomen and they found tumor. The doctor called me at 7 a.m. I was sent to an endocrinologist. I did not have one. My family doctor found it by accident. The phio. Was the size of a limon.
lucky, I never got to see mine. but not so lucky with the anesthesia
Tell me please if you have take ketokonazol
Hi Kat, I (21 yrs old) was wondering if you would be willing to dm??? me (if that’s what you call it) and talk about this type of tumor. I was recently diagnosed with pheocromocytoma and am very lost. Nobody near me understands and I could really use the talk.
How could they miss this with ultrasound and other imaging techniques they have used? That thing is almost like a tennis ball
With all the understandable anxiety and the paranoia caused by that medication, could they have put you on an anti-anxiety medication? It is cruel that you suffered under that much fear, stress and anxiety. I've read that there is more suicide from anxiety than from depression.
remcat absolutely. This disease is super horrible. I suspect I have it but hope not
@@kevinsnyder2026 how are u now?
Superbrave girl.
G’day from Australia, you Amazing, I’m 64 and I have just been diagnosed, you have given me such a perspective, I’m feeling Strangely calm.
My daughter had to take beta blocan too before the operation and the night before the surgery the nurse forgot to give her ... she could of killed my daughter ... her blood pression was 200
Tbh I think you probably scared any pre surgery visitors away with your paranoia. You needed to try and deal with all of your negative feelings like watching yoga videos on CZcams instead of trying to shut your feelings out. Your parents and your boyfriend must have been so stressed by your feelings too and your feelings certainly wouldn’t have helped you to cope at all. Of course we all have to tell the anaesthetist if we would want to be resuscitated should anything go wrong so it didn’t mean you were going to die which I think was in your mind. I hope now you can learn yoga nidra to keep away any negative thoughts you may have in life going forward because we all need to learn to relax in this stressful world we live in.
So glad you had your op and now can put that in the past and move forward. x
gatorade hahaha me too
I’m so grateful I live in Australia with free healthcare.
Unicornland0403 but do you get to see specialists fast. Can you go to doctor of your choice. Honestly curious
im experiencing intense anxiety now im scared to sleep to
I just got diagnosed with this I’m scared
Ant Bertett how are you?
same me yoo
cat please don't die
BebopShadow ??????????