Anyone have a paraganglioma?

@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.🙏🌸

@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
Hello, checking in to see how you and fellow Paragangliomas are
doing? It’s mid July and have another follow up appt at MDA Houston in one week. Tram has been actively watching since last Dec. Just finished my last radiation treatment after recent breast cancer surgery. Prayers for you all! Thanks, Suzanne