Anyone experiencing symptoms of pheochromocytoma?
I have had recent spikes of BP which ended up in the ER also with pain in my neck. Have had Cat Scans of chest/abdomen which are normal. Will be having a Pet Scan this week. Wondering if anyone has experienced this?
Anyone experiencing symptoms of pheochromocytoma?
I have had recent spikes of BP which ended up in the ER also with pain in my neck. Have had Cat Scans of chest/abdomen which are normal. Will be having a Pet Scan this week. Wondering if anyone has experienced this?
Thank you @colleenyoung for the tag!!
Hello @nanakouk
I am very sorry to here you are not feeling well. I am not a doctor but I have spent the last eight years of my life fighting an adrenal tumor that was finally removed May 3, 2023. I was so blessed to have found help with the world's leading Adrenal Specialist at the Carling Adrenal Center in Tampa FLorida.
Are you willing to provide more information. Have you been formally diagnosed with a pheochromocytoma? What other testing have you completed?
Thanks
Dawn
Thank you @colleenyoung for the tag!!
Hello @nanakouk
I am very sorry to here you are not feeling well. I am not a doctor but I have spent the last eight years of my life fighting an adrenal tumor that was finally removed May 3, 2023. I was so blessed to have found help with the world's leading Adrenal Specialist at the Carling Adrenal Center in Tampa FLorida.
Are you willing to provide more information. Have you been formally diagnosed with a pheochromocytoma? What other testing have you completed?
Thanks
Dawn
Thank you @colleenyoung for the tag!!
Hello @nanakouk
I am very sorry to here you are not feeling well. I am not a doctor but I have spent the last eight years of my life fighting an adrenal tumor that was finally removed May 3, 2023. I was so blessed to have found help with the world's leading Adrenal Specialist at the Carling Adrenal Center in Tampa FLorida.
Are you willing to provide more information. Have you been formally diagnosed with a pheochromocytoma? What other testing have you completed?
Thanks
Dawn
Thank you for your response…as of today I called about the authorization of my Pet Scan.. denied due to not enough previous testing done that requires a Pet Scan.. had a 24 urine test which showed elevated levels and Cat Scans/with contrast of the chest and abdomen..am waiting for the next step..very frustrating!
@nanakouk
I certainly understand. It's a very complicated and difficult process for insurance companies. Lots of red tape to break through.
When you say they did, a 24-hour in the the levels were high. Can you be specific on which levels? Have they checked any blood serum catecholamine levels? Have they checked aldosterone and renin levels? Have they mentioned doing an adrenal vein sampling (AVS)?
Are you any seeing any specialists??
What other symptoms do you have?
Prayers for guidance and wisdom!
Thanks
Dawn
@janfam
Mine took 25min.
Absolutely wonderful clinic, hospital, staff, and doctors. He's a fantastic teaching physician as well and pray that he shares his knowledge with many people so that they can also treat patients and their illnesses to the best of their abilities with the proper knowledge and training. He says one in seven people have adrenal tumors or adrenal disorders and don't even know it. That blows my mind. Just thinking about that one in seven, his mind-blowing statistics.
Congratulations on a successful surgery and I'm hoping you're doing much better now. What
Thanks,
Dawn
Anyone experiencing symptoms of pheochromocytoma?
I have had recent spikes of BP which ended up in the ER also with pain in my neck. Have had Cat Scans of chest/abdomen which are normal. Will be having a Pet Scan this week. Wondering if anyone has experienced this?
Hi,
My wife has a Pheochromocytoma which many in her family have had and died from. She had a massive hemorrhage in 2016 and no one has been able to determine the etiology. The Pheochromocytoma was only discovered after the stroke but she is certain it has been there most of her life and is very likely the cause of her stroke.
She has been to doctor after doctor, including MD Anderson, and we have tried getting Mayo Clinic to consider looking at her, they will not.
If she does not find someone willing to do surgery to take it out, we are certain that, like the rest of her family members, she will stroke again, have a heart event or have cancer all of which run rampant in her family. The symptoms she had before her stroke have started happening again for the last 2.5 years and we have no one willing to help her.
Does anyone know an endocrine surgeon who is lgbtq safe and willing to take the Pheochromocytoma out with previous blood work that is not very conclusive and imaging that shows it has grown a small amount in the past 6 years. She can not handle any more testing, blood draws etc.
we would want to do a consult via video or the phone before driving to wherever the doctor might be located to have it taken out.
Doctors have been extremely traumatizing for her in ways I won’t detail here.
Thank you,
We are desperate for help.
I’m going through something similar right now. Still waiting on a few labs to come back. I have an adrenal mass on my left gland, that’s been getting bigger each year and my cortisol levels were out of whack. I too, just want this removed. I already had a heart attack. Was she able to have it removed as of yet?
Good morning!
Has anyone had an Adrenal Cortical Carcinoma ACC test done with your 24hr urine test? Why is this test necessary? If is it necessary for someone with exceedingly small nodule in one adrenal glands. My endo ordered this test, without explaining and informing me that my insurance may not cover it. I have done multiple urine tests with Metanephrine slightly elevated.
The ACC test was not covered by my insurance as it was reported as clinical risk and integrated clinical risk for adrenal cortical carcinoma, adenoma, or other adrenal malignancy.
Has anyone had this test done with their 24hr urine sample test?
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Anyone experiencing symptoms of pheochromocytoma?
I have had recent spikes of BP which ended up in the ER also with pain in my neck. Have had Cat Scans of chest/abdomen which are normal. Will be having a Pet Scan this week. Wondering if anyone has experienced this?
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1 ReactionHi @nanakouk, I moved your question to this existing discussion:
– Pheochromocytoma: Anyone being treated for an adrenal mass? https://connect.mayoclinic.org/discussion/pheochromocytoma/
I did this so you can connect with @slynnb @lisanewell68 @vlk420 @dawn_giacabazi @janfam @jeanern01 @parve @larak @packard68 @jimmysherif @dreneeballengee @cassieannr @ladyj5 and others.
What did the PET scan reveal? What are next steps for you?
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1 ReactionThank you @colleenyoung for the tag!!
Hello @nanakouk
I am very sorry to here you are not feeling well. I am not a doctor but I have spent the last eight years of my life fighting an adrenal tumor that was finally removed May 3, 2023. I was so blessed to have found help with the world's leading Adrenal Specialist at the Carling Adrenal Center in Tampa FLorida.
Are you willing to provide more information. Have you been formally diagnosed with a pheochromocytoma? What other testing have you completed?
Thanks
Dawn
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3 ReactionsI also went to Carling! He is amazing and I had the mini back surgery which took 19 minutes.
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2 ReactionsThank you for your response…as of today I called about the authorization of my Pet Scan.. denied due to not enough previous testing done that requires a Pet Scan.. had a 24 urine test which showed elevated levels and Cat Scans/with contrast of the chest and abdomen..am waiting for the next step..very frustrating!
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Helpful -
Hug
1 Reaction@nanakouk
I certainly understand. It's a very complicated and difficult process for insurance companies. Lots of red tape to break through.
When you say they did, a 24-hour in the the levels were high. Can you be specific on which levels? Have they checked any blood serum catecholamine levels? Have they checked aldosterone and renin levels? Have they mentioned doing an adrenal vein sampling (AVS)?
Are you any seeing any specialists??
What other symptoms do you have?
Prayers for guidance and wisdom!
Thanks
Dawn
-
Like -
Helpful -
Hug
3 Reactions@janfam
Mine took 25min.
Absolutely wonderful clinic, hospital, staff, and doctors. He's a fantastic teaching physician as well and pray that he shares his knowledge with many people so that they can also treat patients and their illnesses to the best of their abilities with the proper knowledge and training. He says one in seven people have adrenal tumors or adrenal disorders and don't even know it. That blows my mind. Just thinking about that one in seven, his mind-blowing statistics.
Congratulations on a successful surgery and I'm hoping you're doing much better now. What
Thanks,
Dawn
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Like -
Helpful -
Hug
3 ReactionsGo to Carling! Another dr in Miami was going to cut me open and it would have been major surgery. Dr Carling did mini back scope in 19 minutes.
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2 ReactionsI’m going through something similar right now. Still waiting on a few labs to come back. I have an adrenal mass on my left gland, that’s been getting bigger each year and my cortisol levels were out of whack. I too, just want this removed. I already had a heart attack. Was she able to have it removed as of yet?
-
Like -
Helpful -
Hug
1 ReactionGood morning!
Has anyone had an Adrenal Cortical Carcinoma ACC test done with your 24hr urine test? Why is this test necessary? If is it necessary for someone with exceedingly small nodule in one adrenal glands. My endo ordered this test, without explaining and informing me that my insurance may not cover it. I have done multiple urine tests with Metanephrine slightly elevated.
The ACC test was not covered by my insurance as it was reported as clinical risk and integrated clinical risk for adrenal cortical carcinoma, adenoma, or other adrenal malignancy.
Has anyone had this test done with their 24hr urine sample test?
Thank you!