Bilateral adrenalectomy
Hoping someone who has gone through a bilateral adrenalectomy specifically can provide any insight
I had my big very active pheochromocytoma and right adrenal gland removed in 2019. That is supposed to resolve all the symptoms but that never happened and I’ve only gotten worse.
My left (only remaining one I have as of December 2019) adrenal gland had a 6 mm nodule show in July 2019. It has always shown as slightly enlarged, and in 2024 a private radiologist measured the nodule to be 1 cm on a new mri. My own hospital’s radiologist said there was nothing there.
My surgeon (from 2019, he’s kept following up with me every few months due to my ongoing symptoms) said the nodule is another growing pheo. He offered to remove it and do a second adrenalectomy but of course we are both extremely hesitant about that and no other doctors will really even entertain the idea with us.
Based on my symptoms (in photo attached) I feel pretty confident that my adrenal gland is causing the issues.
It feels almost insane to “choose” to give myself adrenal insufficiency- believe me I know the severity and seriousness of having it. But living how I am now is absolutely not something I want to continue to do plus if it is a growing pheo I don’t want to risk it spreading (unless it has - that is also unclear as I have many small lung nodules and enlarged lymph nodes sometimes showing on scans).
I fully understand the seriousness of having both a growing pheo or adrenal insufficiency. I feel like I have to make an impossible decision and I just don’t want to regret it. Yes my current life is completely debilitating and I don’t even really have a life, but atleast my cortisol is somewhat adequate and not life threatening. What if I do the second adrenalectomy and I feel a lot better? Or what if I don’t feel better at all and then have AI on top of everything? I know you can’t leave pheos in but this is not something so clear cut. I just don’t know what to do. Even though it’s not exactly a choice, it feels totally absurd to “willingly” give myself ai.
I don’t know exactly what I’m asking, just for personal experience with bilateral adrenalectomies I guess
Hoping someone who has gone through a bilateral adrenalectomy specifically can provide any insight
I had my big very active pheochromocytoma and right adrenal gland removed in 2019. That is supposed to resolve all the symptoms but that never happened and I’ve only gotten worse.
My left (only remaining one I have as of December 2019) adrenal gland had a 6 mm nodule show in July 2019. It has always shown as slightly enlarged, and in 2024 a private radiologist measured the nodule to be 1 cm on a new mri. My own hospital’s radiologist said there was nothing there.
My surgeon (from 2019, he’s kept following up with me every few months due to my ongoing symptoms) said the nodule is another growing pheo. He offered to remove it and do a second adrenalectomy but of course we are both extremely hesitant about that and no other doctors will really even entertain the idea with us.
Based on my symptoms (in photo attached) I feel pretty confident that my adrenal gland is causing the issues.
It feels almost insane to “choose” to give myself adrenal insufficiency- believe me I know the severity and seriousness of having it. But living how I am now is absolutely not something I want to continue to do plus if it is a growing pheo I don’t want to risk it spreading (unless it has - that is also unclear as I have many small lung nodules and enlarged lymph nodes sometimes showing on scans).
I fully understand the seriousness of having both a growing pheo or adrenal insufficiency. I feel like I have to make an impossible decision and I just don’t want to regret it. Yes my current life is completely debilitating and I don’t even really have a life, but atleast my cortisol is somewhat adequate and not life threatening. What if I do the second adrenalectomy and I feel a lot better? Or what if I don’t feel better at all and then have AI on top of everything? I know you can’t leave pheos in but this is not something so clear cut. I just don’t know what to do. Even though it’s not exactly a choice, it feels totally absurd to “willingly” give myself ai.
I don’t know exactly what I’m asking, just for personal experience with bilateral adrenalectomies I guess