Featuring Professor Mario Sanna, MD, world-renowned skull base surgeon and founder of the Gruppo Otologico in Piacenza, Italy, and Dr. Susan Richter, MD, international expert in head and neck paraganglioma management. We were also honored to invite our patient perspective, Lacey Koelling, as well as our caregiver perspective, Karen Horton.
This educational webinar was moderated by Dr. Karel Pacak, MD, PhD, DSc, who is a global leader in pheochromocytoma and paraganglioma research.
The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in depth knowledge of your medical history and current situation.
Timings and questions are as follows:
01:21:05 – Q1: What are the recommendations for annual head & neck MRIs?
01:26:35 – Q2: I have SDHA mutation and 2.5cm paraganglioma near the skull base. They are recommending radio therapy instead of surgery because of the danger of the structures nearby. Can the radiation be a cause of the tumor turning malignant? Also, can they measure how far the tumor would have to grow before it starts impacting the function of various structures nearby?
01:28:52 – Q3: Question regarding Belzutifan for head/neck tumors. The patient most likely has 2 vagal paragangliomas and 1 carotid paraganglioma. Dr. Richter, do you have any comments?
01:31:13 – Q4: How to interpret the growth of head/neck paragangliomas?
01:33:57 – Q5: As someone with carotid body tumors SDHD that are non-secreting hormones, is it advised to remove them?
01:35:43 – Q6: For Professor Sanna, is glomus tumor operable?
01:38:22 – Q7: How much blood loss occurs during surgery?
01:39:41 – Q8: Why is surgery preferable to radial surgery even though radial surgery is so much less risky and invasive?
01:43:31 – Q9: Is there any connection with low plasma glucose or glucose uptake in head & neck paraganglioma? Is there a scan that might explain the tumor behavior?
01:45:18 – Q10: Two of my daughters have inherited SDHC genetic mutation from me unfortauntely. I had a vagal paraganglioma successfully removed in 2021. My oldest, 10, has been having intermittent episodes for a few years similar to the ones I had before official diagnosis: intermittent pain, left-sided ear pain, migraine, and vertigo. Nothing showing up in ultrasound or MRI–any suggestions for investigation?
01:48:41 – Q11: For a patient on watch-and-wait protocol for a vagal paraganglioma, what kind of precautions should be done if the patient, for example, undergoes a colonoscopy or other anesthesia procedure?
01:49:57 – Q12: For bilateral carotid body tumors, if one carotid body has already been removed with the tumor, but then years later, another tumor grows on the other side. Can the other carotid body be removed? What are the outcomes or impact if patients have both carotid body removed?
01:51:07 – Q13: Regarding NIH watch & wait protocol – At what point do objective clinical symptoms and biochemical functional proof of catecholamine toxicity override the “no-tumor-no-surgery” rule to prevent loss of human life?
*Click here to view Dr. Richter’s slides from the presentation.
*Click here to view Professor Sanna’s slides from the presentation.