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Pheochromocytoma: Anyone being treated for an adrenal mass?
Diabetes & Endocrine System | Last Active: Sep 27 2:28pm | Replies (93)Comment receiving replies
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.
Replies to "Hi, My wife has a Pheochromocytoma which many in her family have had and died from...."
@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
So sorry to hear this news, I was diagnosed with a Pheochromocytoma by a endocrinologist at the UW after suffering from severe medical problems, heart attacks out of nowhere ext, when I read your post it really is mind blowing that most doctors haven’t even heard of some of these things, now I’m wondering if because they ignored the Pheochromocytoma now I have Nutcrackers Syndrome, apparently involving my kidney and aorta, and only a few doctors know how to treat, I’m scheduled for April 17 and on a cancellation list. Saw a Neurosurgeon yesterday hoping he could help however he said he had never heard of any of the 3 rare conditions I have, it’s frustrating for him he said because he wishes he could help-as I am obviously wasting away quickly.
I unfortunately had to call for a aid car to take me after my pain became worse, I was unable to stand or sit, but a very bad experience in ER occurred and I was discharged without a exam, they had no room for me and they accused me of refusing treatment????
My doctor ordered a hospital bed for me as I have no subcutaneous fat and the medical supplies Store Representative said they had to request my medical records from my doctor in addition to his written prescription..
I feel so depressed now , don’t even think I will make it till April 17, and now I’m too scared to go to a hospital and being thrown out because of them being overwhelmed????
This has ruined my mental health as well, and I feel like it’s to overwhelming for my husband, causing stress depression and anxiety for all of us in this house,
Have you looked at adrenal.com?
Moffitt Cancer Center
Tampa Fl
https://www.moffitt.org/
Dr Tobias Carling in Tampa is supposed to be the best Pheochromocytoma surgeon in the country. Try contacting him. Worth a try.
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?
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@jw7, welcome.
JW, it sounds like your wife has been through a lot and I know you want the best for her.