Paraganglioma / Carotid Body Tumor Question

Thank you for your interest, @hopeful33250! When I say no following doctor- JH doc is a bladder ca doc, tumor was in bladder but NOT bladder cancer. My uro who was treating me for bladder ca is here. He knows nothing about any of this dx. JH doc said monitor yearly with PET/MRI and cystoscopy. Uro here carrying out orders. Other than that, I don't know who would respond to suspicion of a tumor. JH doc said I could return to their neuroendocrine team if needed. I am monitored at my local cancer center for hemochromatosis and they won't oversee it b/c they said it is too rare. Yes, I'm assuming the AP window defect is congenital. I have always had a murmur, but didn't know the cause. I can only assume this is it.

I was reading a post above and am a bit concerned b/c I have been having sweats, flushing, higher blood pressures and headaches, which I usually do not have. What could be done at the local level to begin? (Metanephrines, 24-hour urines?) I came off prednisone for cellulitis of face about 9 days ago. Seems to have started during that. I have also pretty much cut out sugar after having been a sugar addict. I am so confused as to what may be what. Thoughts?

Peace, Joy and Good Health to All,
Susan

Anyone have this? I found out I have one because we were trying to figure out how to stop my migraines once I get them and can't get rid of them.i get dizzy and my memory keeps getting worse..my migraines came back after 6 months of not having any..i thought I got the dizziness under control but it's back off and on.ive got pain in my inner ear and the pulsing pain that was in my right ear disappeared but now its started in my left ear my neurologist has decided to watch it instead of shrinking because it's too small to risk radiation side effects. Its been a year since I had my last MRI and she said we're waiting til I have symptoms again. I feel like this needs to be done.im not a fan of MRI'S but I wonder if it shifted or something. Anyone have a glomus brain tumor?

Hi, @kfs - welcome to Mayo Clinic Connect. You will note I moved your post to this existing thread on paraganglioma so that you can connect with others — and their loved ones — with this diagnosis. The issues with your memory, dizziness and pain sound challenging to deal with.

Hoping that here you can meet @cootiesgirl1 @hopeful33250 @sharik @patriciagsr @ristene, who may have some thoughts from their own experiences related to MRI frequency during a watching and waiting period.

Also, here is an overview of paraganglioma from Mayo Clinic that you may find helpful https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970.

How has your daily life functioning been with the symptoms you've been experiencing, kfs?

I don’t think I will be of much help here but still wanted to respond. I had a neck para. I never had an MRI, only a CT scan and ultrasound. I never did a “wait and see” as surgery was recommended right away. Has this been discussed for you? A friend of mine had a glomus jugular and it was treated with Cyberknife. If you are on Facebook, a great resource is a page called Pheochromocytoma and Paraganglioma Support Group. There is a lot of knowledge there!

I was wondering, how did your friend with the glomus jugular fare with cyber knife?

Her Cyberknife was very successful! She initially had surgery to remove her tumor, which was long and complicated. A few years later she had regrowth and that is when she pursued Cyberknife. She wishes she had done that to begin with. It has been over 15 years now with no growth or complications.

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?

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?

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.

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!