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kfs (@kfs)

Glomus brain tumors (paraganglioma)

Brain Tumor | Last Active: Feb 18, 2020 | Replies (16)

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@jenniferhunter

@kfs I don't have experience with these tumors, but doctors need to look for what they call a differential diagnosis, and there can be other reasons for your symptoms. It is possible that they were incorrect with the diagnosis, and you may want to start fresh with a new different specialist opinion. I also get pulsatile tinnitus that comes and goes, and I have a lot of muscle tightness in my neck because of thoracic outlet syndrome that pulls into my jaw and ear, and has pulled my jaw out of alignment. I work on all of that in physical therapy. I have been misdiagnosed before and doctors have also missed things in my case. There is a lot that goes into a diagnosis, not just what the imaging shows, and sometimes it's only after other problems are excluded through testing, that a true diagnosis emerges. Doctors also can get unintended misinformation from patients that can lead them down a different path. Then there is a lot of consideration to where a problem is, and if surgical intervention is appropriate because they do not want to do more harm than good. There may not be a good path for surgery that wouldn't cause damage to something else. I know living with uncertainty causes anxiety, and I've been there too. Sometimes we just have to breathe and remember that we are doing OK, and also to keep paying attention so we notice changes that happen that could be clues. If you want to know what your doctors are thinking, request your medical records and reports, and look up what you find in them.

I did find some literature that explains paragangliomas and their symptoms, and also talks about the differential diagnosis. It has a case study of a patient who had this tumor. You can look up the symptoms of the the other possible diagnosis and see if anything relates to your experiences.
https://www.cancernetwork.com/articles/paraganglioma-potentially-challenging-tumor

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Replies to "@kfs I don't have experience with these tumors, but doctors need to look for what they..."

I have all the symptoms of a glomus tumor and different drs agreeing on one..I've read that's it's rare so finding someone with that expertise is difficult. The final diagnoses were my migraines aren't connected to the tumor and the inner ear deficit isn't connected to the tumor and the tumor isn't interfering with anything at the moment so we will watch it..they uped my dose of preventative migraine medication and weren't clear as to how we were watching it..my symptoms like dizziness had been under control from a years worth of physical therapy. I do have tightness in my neck that radiates pain to my head which gets worked on in therapy but my symptoms slowly came back over the last several months and they told me if I'm having symptoms to make an appointment with the guy I just saw but the symptoms aren't connected to the tumor so what symptoms? So I'm at least glad I can get a "second " opinion. Its extremely frustrating.