Paraganglioma / Carotid Body Tumor Question

Hello @northwoodsbarb,

I'm glad to hear that you were able to have a video appointment with a doctor at Mayo.

I look forward to hearing from you again. Were you able to get some helpful information at that appointment?

Good evening, it is hoped you had an informative appointment resulting in a detailed treatment plan to move forward, should you choose to do so. I never ignore the feelings when it just doesn't feel right! We all have the ability to think it through if we take the time. As a child growing up when anxious or uncertain, my grandmother would say, "sometimes you need to sit, be still and let you mind calm down--and you will know what to do and when to move" .... she was right. It is hoped the words from my grandmother will help you along your journey. Be safe and take care 🙂

Hi Teresa,

Yes, my video appointment was fantastic and informative. I’m glad I decided to do it. Thank you for asking.

Next steps to come.

Barb

@northwoodsbarb

So good to hear your report, Barb! Will you be continuing to explore the next steps with Mayo or will your current medical team follow Mayo's suggestions?

Paraganglioma Tumor
I have six out of ten symptom that is known best all though there are a hundred or more the medical info says .Right now it's nausea and diarrhea,Bad headaches and just no energy. I would like to hear from someone that maybe showing these symptom, I can't find a l about this tumor because it's so rare.

Welcome, @tenclawz. To connect you with other members who have experience with paragangliomas and to read the information provided in the previous posts, I moved your message to this existing discussion:
- Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/

Paragangliomas are rare. Your symptoms are fairly general and can be caused by many different conditions. May I ask what testing or clinical findings have led to suspecting that you have a paraganglioma tumor?

A needle biopsy through my back into the tumor which was sent to a lab in texas .IT took over a week for the lab. to figure out what it was.My oncologist called me with the diagnosis Paraganglioma tumor.

I had a needle biopsy through the back, AND, it was done locally. Biopsy was sent to a lab in Texas to learn
what it was. My doctor had never heard of it before.
I would like to hear more about your symptoms if
you would , please.

@tenclawz thanks for the additional information about your diagnostic process and the it was confirmed to be a paraganglioma tumor. I'm tagging a few other members who can share their symptoms and treatment experiences like @sharik @cootiesgirl1 @ristene @patriciagsr @mrruttinger1 @katherinepearl350 @northwoodsbarb.

Tenclawz, where is your tumor located? Did your doctor refer you to a cancer center or a physician specializing in paragangliomas?

Hello, I had a vagal paraganglioma that was removed by Dr Pirgouisis in Mayo in Jacksonville and they told me a biopsy was not recommended and it would be done when it was removed. I suggest you 1st go to Mayo, if there is where you will be treated, and let them decide what to do…
Keep us posted