Paraganglioma / Carotid Body Tumor Question

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?

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.

@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?

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

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 🙂

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?

Wow, this one conversation eased my mind and gave me so much info. I have a unilateral CBT para that was found in January. I was going to get surgery on June 28 but never saw an endo and just had a hinky feeling.

After getting all records sent to May I have a video call with Dr Gruber this coming Wednesday.

Thank you!

Pheochromocytoma & Paraganglioma - The Pheo Para You may find this group helpful for information. I would also suggest looking up BCAN which is the Bladder Cancer Network. I was diagnosed with a rare Bladder Paraganglioma last year which was successfully removed at the Cleveland Clinic. In addition, underwent genetic testing with negative results.

Hi @mrruttinger1, your experience and support of dealing with vocal cord paralysis would be most welcome in this discussion:
- Vocal cord paralysis https://connect.mayoclinic.org/discussion/vocal-cord-paralysis-26b28b/

Is further treatment recommended for you or simply to monitor the effects of the June treatment?

Oh thank you so very much for your quick reply! I didn’t expect to see it because the original post was from so long ago 😊. I am so pleased to hear about the great long-term results for your friend with cyber knife radiation. I originally had my paraganglioma ( which was located in the left carotid body region and was intertwined with the Vegas nerve) surgically removed way back in 1993. Left vocal cord paralysis and trouble with left swallowing resulted from the surgery. I learned in December 2020 that it had grown back and was the reason why I was having symptoms. I had cyber knife Radiation at Phoenix CyberKnife and Radiation Oncology Center, June 2021. My MRI in August showed that it had not yet shrunk, but I clearly now have almost no pain on that side now, And I can sleep on that side, whereas I hadn’t been able to for a long time, and my sweating has greatly reduced. The radiology oncologist says that it could take up to two years for the tumor to shrink. I am a little disappointed to hear that. I am wondering if anyone else out there has anything To say about CyberKnife Radiation?