1. < Neuroendocrine Tumors (NETs)

Just diagnosed Paraganglioma - how to treat side effects?

Posted by fas @fas, Feb 6 12:53pm

I have just been diagnosed with Paraganglioma, 3cm mass in and around the carotid artery of my neck. The reason I have this diagnosis is I KNEW something was seriously wrong and suspected everything was happening because of one cause. Despite everyone trying to treat each symptom individually and trying to tell me this was simply the aging process I just knew that it couldn't be normal for a healthy 58 year old woman to suddenly out of the blue have:
Extremely high blood pressure
Severe headaches and abdominal pain
Terrible dizziness
Numbness in my arm and fingers (now my face too)

After one month, three ER visits, 5 doctor visits and numerous scans, ultrasounds, MRI, CT I received my diagnosis yesterday.

But.... where to go from here. How to treat my many symptoms? Who should I see about this?

Any advice would be appreciated, particularly for the numbness in my face it is just so uncomfortable and weird feeling.

For reference my GP has put me on blood pressure medication which was doubled within a week to try to get it down. I would say mostly it is an acceptable level but seems to be trending up again. That is the only treatment of symptoms I have for now.

Just feeling rather overwhelmed...

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gabulawayo | @gabulawayo | Feb 6 2:47pm

Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming.
You found a GREAT place for resources. So quick too! Well done! I am sure many, many people will be reaching out to you with similar backgrounds and wonderful help. I struggled for many, many years.
Now you have a name for it, you can go forward and get a team to help or the medics who know nothing about it will try all sorts of treatments and tests.
I am hoping you read the thread about NOT having a biopsy!
Check out all the resources for para, they also have wonderful brochures to share with your doctor and a protocol too!
I am blessed that my symptoms are once in a blue moon,( apart from hypertension, which I know is only due to stressors as I usually am hypotense.) I had to tell one radiologist, who was insisting I get a prescription for it, to just let me be for 5 minutes to get myself sorted and then recheck my blood pressure. sure enough it went to normal. Take a pill to lower it and then take a pill to raise it. LOL.
Know yourself, advocate for yourself. You KNOW your body!
All the best. I will keep you in my prayers that you receive the very best people to help you.

REPLY
2 replies
fas | @fas | Feb 7 8:43pm
In reply to @gabulawayo "Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming. You found..." + (show)
@gabulawayo

Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming.
You found a GREAT place for resources. So quick too! Well done! I am sure many, many people will be reaching out to you with similar backgrounds and wonderful help. I struggled for many, many years.
Now you have a name for it, you can go forward and get a team to help or the medics who know nothing about it will try all sorts of treatments and tests.
I am hoping you read the thread about NOT having a biopsy!
Check out all the resources for para, they also have wonderful brochures to share with your doctor and a protocol too!
I am blessed that my symptoms are once in a blue moon,( apart from hypertension, which I know is only due to stressors as I usually am hypotense.) I had to tell one radiologist, who was insisting I get a prescription for it, to just let me be for 5 minutes to get myself sorted and then recheck my blood pressure. sure enough it went to normal. Take a pill to lower it and then take a pill to raise it. LOL.
Know yourself, advocate for yourself. You KNOW your body!
All the best. I will keep you in my prayers that you receive the very best people to help you.

Jump to this post

Thank you for your message. I have seen the comments on biopsy and absolutely will not allow this to be done. Although to date there has been no suggestion of this. My GP (who has never seen a case of this himself before) has been great and we are lining up a couple of good options for surgery. A lot to think about but I am focused on moving forward with this and getting it out asap!
At the end of the day I am very hopeful that once that happens the side effects will resolve. Until then I think I have to just cope with the side effects as best I can.

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elgie17 | @elgie17 | Feb 8 10:28am

what is your para secreting? Mine secretes dopamine. I have no side effects.

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1 reply
fas | @fas | Feb 8 3:11pm
In reply to @elgie17 "what is your para secreting? Mine secretes dopamine. I have no side effects." + (show)
@elgie17

what is your para secreting? Mine secretes dopamine. I have no side effects.

Jump to this post

@elgie17 I literally just did the 24 hour pee test. My husband took it in this morning, not sure how long it will take to get the results. It's interesting to see how everyone had their paraganglioma discovered, mine was only as a result of serious side effects all at once, so bad that I went to ER a month ago and this is where it all started, multiple tests and scans until they found it three days ago in my neck - splaying the carotid artery. So, I am literally at the start of this journey. Thanks for your input though, any thoughts and advice are so appreciated 🙂

REPLY
1 reply
elgie17 | @elgie17 | Feb 8 8:59pm
In reply to @fas "@elgie17 I literally just did the 24 hour pee test. My husband took it in this..." + (show)
@fas

@elgie17 I literally just did the 24 hour pee test. My husband took it in this morning, not sure how long it will take to get the results. It's interesting to see how everyone had their paraganglioma discovered, mine was only as a result of serious side effects all at once, so bad that I went to ER a month ago and this is where it all started, multiple tests and scans until they found it three days ago in my neck - splaying the carotid artery. So, I am literally at the start of this journey. Thanks for your input though, any thoughts and advice are so appreciated 🙂

Jump to this post

I would advise you do also the boood plasma test for both metanephrines and catochalimines. My doc only ordered the 24 hrs urine test and for 2 years i thought my para was dormant. Blood plasma showed crazy levels of dopamine. I discovered thru a ultrasound of the thyroid. My primary care suspected i had swollen glands. But it turned out i had a 5 cm psraganglioma ... 🙁

REPLY
1 reply
fas | @fas | Feb 9 1:24pm
In reply to @elgie17 "I would advise you do also the boood plasma test for both metanephrines and catochalimines. My..." + (show)
@elgie17

I would advise you do also the boood plasma test for both metanephrines and catochalimines. My doc only ordered the 24 hrs urine test and for 2 years i thought my para was dormant. Blood plasma showed crazy levels of dopamine. I discovered thru a ultrasound of the thyroid. My primary care suspected i had swollen glands. But it turned out i had a 5 cm psraganglioma ... 🙁

Jump to this post

@elgie17 that is good advice! Thank you I will see if I can get it done too. Thanks

REPLY
fas | @fas | Feb 10 1:41pm
In reply to @gabulawayo "Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming. You found..." + (show)
@gabulawayo

Oh, I feel your frustration, anxiety, and helplessness! All of this is so overwhelming.
You found a GREAT place for resources. So quick too! Well done! I am sure many, many people will be reaching out to you with similar backgrounds and wonderful help. I struggled for many, many years.
Now you have a name for it, you can go forward and get a team to help or the medics who know nothing about it will try all sorts of treatments and tests.
I am hoping you read the thread about NOT having a biopsy!
Check out all the resources for para, they also have wonderful brochures to share with your doctor and a protocol too!
I am blessed that my symptoms are once in a blue moon,( apart from hypertension, which I know is only due to stressors as I usually am hypotense.) I had to tell one radiologist, who was insisting I get a prescription for it, to just let me be for 5 minutes to get myself sorted and then recheck my blood pressure. sure enough it went to normal. Take a pill to lower it and then take a pill to raise it. LOL.
Know yourself, advocate for yourself. You KNOW your body!
All the best. I will keep you in my prayers that you receive the very best people to help you.

Jump to this post

@gabulawayo Hi, thanks so much for your positive message :). I am wondering about the resources you mentioned for para - brochures to share with doctors and a protocol...do you know where I can get these? I have been with my GP for 15 years and he is great but was very quick to admit he knows only what he learnt as a resident 30 years ago! So all resources we can get would be greatly appreciated..

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gabulawayo | @gabulawayo | Feb 14 1:36pm

Hi,
A link for the site. they are the Pheochromocytoma & Paraganglioma Alliance. Pheopara Alliance
https://pheopara.org/
ALl the best.

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