Anyone have a paraganglioma?

@taracronwall
Each case is different; some drs want the embolization done the day before the CBTresection so as to reroute the blood supply away from the tumor, yet make sure any blood flow diversion doesn't affect brain. I would tell them about your concerns of choking on mucus; they can make a Plan for that, Im confident. IF they decide to do the embolization for the CBT.
The feeling of a wad of gauze stuck in my throat is still there. My numbness from jawline, down the side of my neck and halfway up my ear, is tingly numb but not painful and no muscle problems. I am beginning to wonder if the gagging gauze feeling might be not getting better due to all the nodules on my thyroid...I kinda think of my neck area as a 2 lane highway, with all the traffic that passes through it being what would normally be an 8 lane higheay... lotsa nerves, arteries, vessels, glands, etc., in a very small space, touching each other, irritating each other if they're swollen or growing. The thyroid nodule they biopsied this last time, was benign. But I have lots of them so they will be checking them annually.

@taracronwall
Thyroid is what controls your mood, and can be a instigator of depression, worry, anxiety, irritability. At my recent annual physical I discussed this w my PCP...it was difficult; I cried...but I had my husband sitting w me for moral support. My dr upped my anti-depressant. That was 9 days ago. Not sure if its made a difference yet, but I haven't been as irritable. And Im sleeping better; not waking up with a billion what-if's thundering through my mind.

Yes, I was recently diagnosed with a non-malignant paraganglioma pushing on my carotoid artery.

@jeanwil Hi and welcome to Mayo Connect. What led to your diagnosis? Where you having any symptoms? Thanks.

@tomrennie
Hi There - I was dizzy, weak, and head achy. My blood pressure was elevated, so PCP sent me for angiogram. The test showed paraganglioma in left neck and meningioma brain tumor.

@jeanwil So the diagnosis kind of came out of nowhere? That can be a lot to process. How are you doing overall? Do you have any more tests to do? What do your next steps look like?

@tomrennie
In addition to the angiogram, I've had MRI of each tumor and a PET scan. I've submitted various laboratory samples. My next step is to meet with OTO doc and then back to Brain Center at MD Anderson in Houston where I reside. Another MRI has been scheduled. Right now the plan is mostly testing and wait/see if paragangliom grows or changes. All the best to you!

@jeanwil The process continues for you. It is great to have a plan. What is an OTO doc? I have never heard of that acronym before. Thanks.

@taracronwall Hello! I also have a Paraganglioma, Carotid Body Tumor, on “watch and wait”
Where did you find the Clinical Trial, at Mayo MN?

Thank you!! Hugs!
Suzanne

@texashummingbird
Hi fellow paraganglioma warrior!!! Not many of us here. So the clinical trial through the National Institute of Health was disturbing. I sent them everything a year of diagnostics and they dismissed me stating I didn’t have enough symptoms😒😔😞 I was hopeful that Lu77 or litathera via IV would shrink tumors however they wouldn’t have any of it. So after many surgical co adults I found out that I have a shamblin class 2 tumor bifurcates the carotid and jugular and extends up to the skull base. They would have to remove my mandible temporarily and cause major damage to my nerves so they said oh well you aren’t disabled now so just let it be. Well actually all the crazy symptoms when this thing appeared in my neck last year resulted in me leaving my job to go out on disability as the symptoms made me crazy and unable to focus or concentrate or physically be stable like tipping over roomingnoarients and I couldn’t have that in a surgical dermatology setting so it was very stressful. Heart racing ear popping heartbeats swishing painful tinnitus and the list goes on , but all I get is on you look great see you in a year!🤦🏻‍♀️ so my last surgical consult is with Dr Hinni at Mayo in AZ in a week. He saw me back in 2012 when it started in my skull base. I’m not very hopeful. I did get radiation at Moffitt and it did shrink a tiny tiny bit but I’m still keeping this place called Envita on the list in the background, they don’t accept insurance so I don’t know if I can afford it or have to do a go fund me? They take your genetic factors and make immunotherapies I guess and do extensive work ups and may have some concoction that may help shrink my tumor. I don’t think that letting things go for me is an option because even though I may look “normal” to others, I have an internal disruption all throughout the day and that’s not a good way to live and in fear of it exploding on a plane with the pressure or heart racing and pounding. I was negative for catecholamine surge which I don’t understand and now drs are saying I have heart disease and it has nothing to do with my tumor🤦🏻‍♀️so life goes on and after a year of surgical consults with Moffitt Tampa General Florida cancer, vascular surgeons biopsies which I would never recommend I only did it to satisfy this dr even though I told him it wouldn’t get any results too bloody, he did anyway. I do know that the bigger these get, the more problematic they are and the watch and wait isn’t good. But I guess if the surgery is more of a risk than how I’m living now that’s what they believe matters, I guess I would agree but it’s scary not knowing what each day brings and I have another lump on the other side of my neck, I know 30% of people with gangliomas have them bilaterally so that concerns me as it keeps growing. That’s my story and if you have any questions and want to pick my brain I’ve been through the gamut of testing for an entire year let me know if it can help.🙏🌸