Hi to everybody, I have been diagnosed with a carotid paraganglioma (3.7 x2.5x2.3 cm) secreting dopamine (and maybe cortisol). I have the French-Canadian founder SDHC mutation. I live in Canada. I have a few questions for you: could you refer me to the most experienced surgeons in Canada (preferably in Quebec or Ontario).
Also, to anyone operated in the neck, what were the impacts of the surgery, the sequella, for a Shamblin II?
Also, did anybody tried radiosurgery (Cyberknife) instead of surgery? And if so, did the radiosurgery succeeded to normalize your hormones secreted by the tumor?
Thank you very much, Julie
PS: after reading more than 100 scientific articles, I don't know if the surgery is worthwile: you can have permanent suffering and paresthesis and many patients finally develop metastases 15-20 years later. So what's the point of this invasive surgery? Stereotactic radiosurgery leads to tumor growth arrest. My only doubt is if it would normalize/cure a tumor that is secreting. Thank you!