Paraganglioma / Carotid Body Tumor Question

It's so great to get your update, @gabulawayo. I see that you are in the States now and looking for a medical team. If you would like a consultation at Mayo Clinic, here is a link with appointment information, http://mayocl.in/1mtmR63.

Will you continue to post as you look for a medical team and a follow-up plan?

Shari, that's so great to hear that you are doing so well!!! Did you have genetic testing done? I am honestly too scalpel shy to get a surgical opinion. Right now it seems that radiation is going to be the best option. I've been told by many doctors now that surgical intervention is not an option and could be fatal given the vascular nature of the tumor location along with the nerve involvement. I'm gearing up for evaluation at the SCCA proton beam radiation therapy center in Seattle WA for evaluation with the founder of the center. It is the closest proton beam radiation center near to MT in a 6 state radius. A 7 to 8 hour drive from where I currently reside. The literature for paraganglioma treated with octreotide shows promising tumor size reduction by 3-11%. This paired with the proton radiation is the most recent treatment option that has been recommended. I will continue to see Dr Pacak and his team at the NIH every 3 to 6 months after my treatment start. I do feel I am in great hands there. Given that I am SDHB ( B for Bad) I am at high risk for secondary malignancy and will need continued supervision for the rest of my life. This is my new "normal". I am not going to say it has been an easy adjust especially because my husband and I were trying to have another child for 7 months before I found out. We have a 4 year old daughter who is the light of our lives. Her genetic testing is pending at the NIH as we did not know prior to having her. The sooner we know the better for disease monitoring and outcomes. The mutation is heterozygous and there is a 50% chance that she has the mutation. Most of my time has been spent researching, reading and deciding what my next move is going to be. I appreciate your feedback!
Best wishes,
Ristene

Hi, I know this is an older post but I have just been diagnosed with paraganglioma and live in the Seattle area. I am at the beginning of this journey and haven't yet spoken with surgeons regarding taking it out immediately, not at all or having radiation. Did you move forward with the proton radiation? Did it reduce the tumor? Who did you work with? If you are willing to share this with me it would be so helpful 🙂
Thanks so much

I also have a paraganglioma - carotid body tumor in the right part of my neck. The surgeon is discussing with the radiologists on the artery involvememt. It looks like its completely encased by the tumor 🙁

I also have a paraganglioma - carotid body tumor in the right part of my neck. The surgeon is discussing with the radiologists on the artery involvememt. It looks like its completely encased by the tumor 🙁

Hi, I know this is an older post but I have just been diagnosed with paraganglioma and live in the Seattle area. I am at the beginning of this journey and haven't yet spoken with surgeons regarding taking it out immediately, not at all or having radiation. Did you move forward with the proton radiation? Did it reduce the tumor? Who did you work with? If you are willing to share this with me it would be so helpful 🙂
Thanks so much

@elgie17 I haven't yet met with any surgeons as I was just diagnosed three days ago. I am hoping to meet with two different surgeons next week, but hard to know how quickly I can get in. Usually it's 3 months to get an appointment. My doctor has marked urgent and I do think mentioning that it is paraganglioma might help to get in quicker. Where are you having treatment, is your surgeon a specialist in paraganglioma and if so, how did you find them?
Appreciate any advice and information you have on finding them right surgeron.

I found your story very helpful.
I was just diagnosed with both a vagus nerve and bilateral carotid body tumors. Mayo Clinic was absolutely wonderful. I am not a surgical canidate because of the location and size of my vagus nerve tumor. I am currently preparing for Proton therapy and hoping for the best.
I am also going to have genetic testing done.

Just found this group. I have had a parapharangeal ganglioma since 2012. Mayo in Scottsdale see the best Dr Michael Hinni who said leave it alone and cannot biopsy because too dangerous and too vascular. Fast forward my symptoms have gotten acute since Jan of this year, a carotid body tumor has now shown up, went through iterate scan recently and a vestibular test and mri CT’s parietal. Seeing a team at Tampa general. The ent says no radiation or a feeding tube is in my future. I’m 53 and medical assistant neuromuscular therapist and aging dancer. My balance has gotten way worse my swallowing is scary and choke daily, I have hit my head at least 6 times now splitting it at work. Tip over while rooming patients and they are talking electrostatic radiation. I read up on Luthera??? I have been doing everything g like fenben and ivermectin to smearing ivermectin paste on my neck tumor which is causing hearing issues shushing and tinnitus and pressure on my jaw and ear and pulsing pain throbbing. I’m not sure what the future holds, what job I’ll be able to have and they only said no surgery because this thing encompasses vagus, jugular and carotid arteries. So I don’t sleep have two children single parent and don’t know which way to go with this. Who has any experience in going down this road???? Please someone help. I’m due to see an endocrinologist soon. Have an appt at Moffit to see what they think as a second opinion. Should I go mayo instead???? What other immunotherapies work??? I can’t do hyperbaric oxygen because of the ear pressure already. Thank you for the support in advance🌸🙏