Paraganglioma / Carotid Body Tumor Question

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.

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

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!

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?

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?

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

Hello @cootiesgirl1

It is good to hear from you. I appreciate the update. You have certainly experienced a number of problems and I hope that you are on the right track now. When you say you have no "following doctor" I'm assuming you mean and internist/PCP who oversees your general health and what all the specialists are doing. Can John Hopkins offer you any referrals to an internist who will follow up as your PCP?

It does sound as if a consult with a cardiologist would be a good idea. Has John Hopkins mentioned you seeing one of their cardiologists? Is the AP Window Defect a congenital problem (from birth)?

Please continue to post, @cootiesgirl1. We all learn from each other and it sounds as if you have had a lot of experiences to share. I wish you well as you seek the best medical care for your many health concerns.

Will you post again and provide an update?

Hello, everyone. It's been a while since I've been on- basically in denial mode for mental survival. Have had to take a break from the emotional strain I had been under since July1 2018 when dx with "high grade urothelial bladder cancer" (AND TREATED FOR 9 MONTHS), which Johns Hopkins correctly diagnosed as paraganglioma of the bladder. That's where my tumor was making it even more of a rarity.

I had both ovaries/tubes removed 8 weeks ago d/t "cyst" changing in composition. I had a partial hysterectomy in 2006. All was benign, praise God. Anyhow, I had a PET in April this year that showed "possible reactive lymph node" at aortopulmonary window (defect where aorta/pulmonary vein connected by small vessel allowing blood to go through), no evidence of metastasis. My local uro consulted bladder ca doc at JH and he said it didn't "look" typical and the uptake wasn't too much to just "watch" it. So, I will have another PET and cystoscopy at end of the year and then yearly.

I had metanephrines done before the GYN surgery which were negative.

I recently developed a cellulitis of the face and was put on prednisone and 200 mg Keflex daily x10 days. The doc didn't do a taper so I did my own. I have been off of it for 4 days, but I have been sweating, weak, having headaches intermittently. My blood pressure was up yesterday, 145/84. I usually run 117/78. I will keep monitoring it. I have gained 20 lbs in the last year.

Long story short- I do not have a "following" doc. My uro can consult JH doc but there is no one here to follow. JH doc says if needed I can return to JH to their neuroendocrine team. There is no way I can be a patient of MC, as much as I would like to. I am single, no family and work full time.

Right now I am wondering if I need to see a cardiologist d/t the AP window defect found on my PET (always knew I had a murmur but didn't know what was causing it). I am just over all of this. I need to be normal!

Thank you all for checking in and for sharing your stories. You are all in my daily prayers and I pray for your continued health and happiness 🙂

I did not have much of a voice. It was very weak and raspy. I couldn’t talk on the phone. This is because my vagus nerve was severed and therefore my left vocal cord is paralyzed. A couple of months later I had an injection into the vocal cord to plump it up so that my cords could again come together and make sound. It isn’t perfect but it is so much better than it was. I also sometimes have trouble swallowing clear liquids as they go down so fast and can go down the wrong tube. I try to always use a straw and that helps a lot. All in all, much better than before surgery!

hello @sharik , any consequences after the surgery ?