@kfs Do you have health insurance? If you do, it may be worth a call to them to find a specialist or a teaching medical center who can evaluate you. I am sure it is very frustrating. You might also inquire about any possibilities of financial assistance for medical treatments. Medical centers sometimes have protocols for what they can do as charitable assistance to help a patient if the patient cannot afford treatment. It is worth asking and making contact with specialists who might be doing research on your condition since it is rare. They may have specific requirements about which patients they can help. It may be worth asking Mayo or another major university medical teaching hospital with medical schools and looking up who is doing research into your condition. I was searching for "Glomus tumor research" and finding links about diagnosis and treatment. I was searching to see what I could find for you. I hope some of this will help and provide some information.
https://www.mayoclinic.org/departments-centers/vascular-anomalies-clinic/overview/ovc-20421863
https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970
https://utswmed.org/conditions-treatments/glomus-tumor/
https://www.upmc.com/services/neurosurgery/brain/conditions/brain-tumors/glomus-tumor
https://www.aurorahealthcare.org/services/cancer/head-neck-cancer/glomus-tumor
https://www.mountsinai.org/locations/cerebrovascular-center/conditions/tumors/paragangliomas
http://med.stanford.edu/skullbasesurgery/conditions-we-treat/paragangliomas.html
Clinical trials
https://www.nichd.nih.gov/health/topics/pheochrom/clinicaltrials/default
This link for Mayo's Clinical trials has links for studies and contact information for the researchers if you click the links
https://www.mayo.edu/research/clinical-trials/diseases-conditions/paraganglioma
This clinical trial says it's enrollment is closed, but there is a phone number and e mail contact for cancer related trials at Mayo.
https://www.mayo.edu/research/clinical-trials/cls-20307106
On the National Brain Tumor Society, you can find this patient story about surgery and recovery from a paraganglioma on Caring Bridge.
https://braintumor.org/share-your-story/my-journey-with-a-rare-brain-tumor/