Yes! @tmhb8 i was just diagnosed with an adrenal mass. It was found incidentally. It is a fairly small tumor. I was referred to endocrinologist, and had several initial labs, many to test hormones, I also had a ct scan of the adrenal glands. When I met with the endocrinologist she said I was unusual because my labs looked good but my ct scan was a little worrisome because the mass was very vascular. So I had to do a 24hr urine test that sent off to Mayo- some new test. Results are pending, but I was told if this test comes back ok, just repeat labs annually for a few years and then nothing. The dr said these are being found to be more and more common- so after initial work up if things look good then basically nothing probably to ever worry about. But every mass she said needs to be investigated. So I think it’s crucial to find a good endocrinologist. I am still learning about this- so I don’t know if I helped at all. Best wishes
Jeane
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.
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.
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.
@jw7 - wow what an incredible journey. My mass was discovered on a post op ct scan after my heart surgery at Mayo. I was already a pt because of my heart and was referred to the adrenal endocrinologist here at Jacksonville. I have been scanned every 6 months, and had numerous urine and blood tests. My labs are normal but my scans are not. They are going to present my case at the next adrenal board meeting here to discuss surgery or following. My mass is very lipid poor hard to determine adenoma or pheochromocytoma. I would suggest trying to have one of your wife’s physician reach out to mayo or try one of the mayo network providers- once seen by them they can get you a referral. That’s how I initially got in with my heart problems. As for testing- I am not sure about that- like I said they have me right now having ct scans every 6 months- I have had no growth- I also get blood work and do 24 hr urine collections- so I would just guess they would require a new scan and blood work at least to see the current measurements of the tumor and hormone levels. But given your wife’s condition they may go by previous scans. Best wishes. I hope this helped.
Jeane
@jw7 - wow what an incredible journey. My mass was discovered on a post op ct scan after my heart surgery at Mayo. I was already a pt because of my heart and was referred to the adrenal endocrinologist here at Jacksonville. I have been scanned every 6 months, and had numerous urine and blood tests. My labs are normal but my scans are not. They are going to present my case at the next adrenal board meeting here to discuss surgery or following. My mass is very lipid poor hard to determine adenoma or pheochromocytoma. I would suggest trying to have one of your wife’s physician reach out to mayo or try one of the mayo network providers- once seen by them they can get you a referral. That’s how I initially got in with my heart problems. As for testing- I am not sure about that- like I said they have me right now having ct scans every 6 months- I have had no growth- I also get blood work and do 24 hr urine collections- so I would just guess they would require a new scan and blood work at least to see the current measurements of the tumor and hormone levels. But given your wife’s condition they may go by previous scans. Best wishes. I hope this helped.
Jeane
Thank you Jeane.
I’m sorry to hear about your health difficulties and am so glad you are receiving the care you need at Mayo. I originally started at the Mayo Clinic very hopeful of finally finding some help only to be disappointed. She is so traumatized that more testing is just not possible right now, unfortunately. She doesn’t have a regular doctor who cares or believes her story other than her neuro surgeon who can’t help in this area. So far I haven’t been successful in getting anyone in the Mayo Clinic to be willing to help out in any way. I’m hoping to find some resources here.
Pheochromocytoma
Just recieved this diagnosis formally. Not sure how I feel about this. Sorting through results. Does anyone have a homeopathic suggestion.
Pheochromocytoma
Just recieved this diagnosis formally. Not sure how I feel about this. Sorting through results. Does anyone have a homeopathic suggestion.
Hello @lisanewell68 and welcome to Mayo Clinic Connect. I found some information on this disorder from the Mayo Clinic's website. Here is a link to some information on the treatment:
Pheochromocytoma
Just recieved this diagnosis formally. Not sure how I feel about this. Sorting through results. Does anyone have a homeopathic suggestion.
@lisanewell68, Lisa, are you a candidate for surgery? Usually, the procedure for pheochromocytoma (an adrenal tumor) is performed using minimally invasive surgery (laparoscopic surgery).
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Hi @tmhb8 and welcome to Mayo Clinic Connect.
I know @jeanern01 was diagnosed with an adrenal mass. Here is also a Q & A about just that. https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/qa-handing-a-suspicious-bump-on-the-adrenal-gland/
WHat has your doctor recommended so far?
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1 ReactionYes! @tmhb8 i was just diagnosed with an adrenal mass. It was found incidentally. It is a fairly small tumor. I was referred to endocrinologist, and had several initial labs, many to test hormones, I also had a ct scan of the adrenal glands. When I met with the endocrinologist she said I was unusual because my labs looked good but my ct scan was a little worrisome because the mass was very vascular. So I had to do a 24hr urine test that sent off to Mayo- some new test. Results are pending, but I was told if this test comes back ok, just repeat labs annually for a few years and then nothing. The dr said these are being found to be more and more common- so after initial work up if things look good then basically nothing probably to ever worry about. But every mass she said needs to be investigated. So I think it’s crucial to find a good endocrinologist. I am still learning about this- so I don’t know if I helped at all. Best wishes
Jeane
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4 ReactionsHi,
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.
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Hug
6 Reactions@jw7, welcome.
JW, it sounds like your wife has been through a lot and I know you want the best for her.
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1 Reaction@jw7 - wow what an incredible journey. My mass was discovered on a post op ct scan after my heart surgery at Mayo. I was already a pt because of my heart and was referred to the adrenal endocrinologist here at Jacksonville. I have been scanned every 6 months, and had numerous urine and blood tests. My labs are normal but my scans are not. They are going to present my case at the next adrenal board meeting here to discuss surgery or following. My mass is very lipid poor hard to determine adenoma or pheochromocytoma. I would suggest trying to have one of your wife’s physician reach out to mayo or try one of the mayo network providers- once seen by them they can get you a referral. That’s how I initially got in with my heart problems. As for testing- I am not sure about that- like I said they have me right now having ct scans every 6 months- I have had no growth- I also get blood work and do 24 hr urine collections- so I would just guess they would require a new scan and blood work at least to see the current measurements of the tumor and hormone levels. But given your wife’s condition they may go by previous scans. Best wishes. I hope this helped.
Jeane
Thank you Colleen I appreciate it!
Thank you Jeane.
I’m sorry to hear about your health difficulties and am so glad you are receiving the care you need at Mayo. I originally started at the Mayo Clinic very hopeful of finally finding some help only to be disappointed. She is so traumatized that more testing is just not possible right now, unfortunately. She doesn’t have a regular doctor who cares or believes her story other than her neuro surgeon who can’t help in this area. So far I haven’t been successful in getting anyone in the Mayo Clinic to be willing to help out in any way. I’m hoping to find some resources here.
Pheochromocytoma
Just recieved this diagnosis formally. Not sure how I feel about this. Sorting through results. Does anyone have a homeopathic suggestion.
-
Like -
Helpful -
Hug
1 ReactionHello @lisanewell68 and welcome to Mayo Clinic Connect. I found some information on this disorder from the Mayo Clinic's website. Here is a link to some information on the treatment:
https://www.mayoclinic.org/diseases-conditions/pheochromocytoma/diagnosis-treatment/drc-20355372It appears that this is caused by a tumor on the adrenal gland. Has your medical team found a tumor like this on your adrenal gland?
@lisanewell68, Lisa, are you a candidate for surgery? Usually, the procedure for pheochromocytoma (an adrenal tumor) is performed using minimally invasive surgery (laparoscopic surgery).
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2 Reactions