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Does anyone have a glomus brain tumor (paraganglioma)?
Brain Tumor | Last Active: Apr 17, 2023 | Replies (18)Comment receiving replies
I have been diagnosed with a glomus jugular tumor in 2018 and I was able to see it on the MRI with the neurologist. She discussed it with her colleague and sent me to a neurosurgeon who agreed with the results and he sent me to a ent dr and a cardiologist and a cancer institute. The ent dr wasn't convinced it was a tumor- without really examining me.he had me do a scan of the temporal bone and in double talk that it's a tumor but it's not a tumor..the cancer dr said it's there and we will do 1 treatment of radiation since its small and they need their own MRI or ct scan then he talks to the ent and says no tumor,then after reading the results says it's too insignificant to shrink but it is there...the original neurologist says we will watch it and if I have symptoms we will see about another MRI. Around spring of last year-2019- I'm experiencing dizziness and pain and odd pulsing in my other ear so they made an appointment with the first neurologist's colleague. I saw him today and hes siding with the ent saying it's not a tumor then says your tumor is cured?!??!?..I'm extremely confused and if I saw it,2 off the new neurologist colleague saw it,neurosurgeon saw it then does it just disappear? He said the ct scan is better than an MRI and it's not there yet MRI's showing it??..and I was having memory issues and migraines and the first neurologist is a woman and said she doesn't have any answers for me concerning memory. And this new neurologist came across as sexist saying she got everyone upset for no reason. I've been having symptoms very similar to when I first found out. I was hoping to get a new MRI- I don't like them,I'm claustrophobic- because I think stuff could have shifted..does anyone have advice because I'm so turned around on this whole thing. Please..any info like do tumors just disappear? The one I have was told it grows extremely slow..ugh
Replies to "I have been diagnosed with a glomus jugular tumor in 2018 and I was able to..."
@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
Hello @kfs
Your confusion is well understood by many of us on Connect. Conflicting opinions by specialists is indeed frustrating and certainly can be anxiety-producing. I suggest, as did @lisalucier and @jenniferhunter, that you seek another opinion. I do suggest that you consider going to a multi-disciplinary medical center like a university medical school or a Mayo facility. These centers are both research-oriented and usually have a medical team that is very good at communicating with patients.
Do you have a facility like that nearby?
Connect
Hi, @kfs - you'll note I moved your post on 2nd or 3rd opinions on glomus jugular brain tumor here to this discussion entitled "Glomus brain tumors (paraganglioma)," as you've posted here before and it's helpful to keep information on similar conditions together.
Sounds as though you are feeling you are getting conflicting information on whether you have a tumor or not, and if it was there, how it might have disappeared.
Hoping some connect members such as @hopeful33250 @ashley5423 @ginette55 @spudlk @jenniferhunter will have some thoughts for you on whether tumors might just disappear. As far as a new MRI and being claustrophobic, @jimhd may have some advice on that.
Are you looking at a new MRI at the same medical center? Or, are you going to another one to get a second opinion? Alternatively, is there a nurse who works with the neurologist you most recently saw to get some help in interpreting what was said to you?