Glomus brain tumors (paraganglioma)

Posted by kfs @kfs, Nov 30, 2019
@hopeful33250

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?

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I would love to go somewhere like the mayo clinic but I can't afford it. I'm paycheck 2 paycheck. The closest places here are about 2 hours away and I've been to a cancer institute there..but that's about it

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@kfs

I would love to go somewhere like the mayo clinic but I can't afford it. I'm paycheck 2 paycheck. The closest places here are about 2 hours away and I've been to a cancer institute there..but that's about it

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@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/

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Can a brain tumor move from a hard hot to the head?..I fell on the ice and hit the back of my head so hard a front tooth popped out.i hit it almost exactly where my glomus tumor is located and I'm having a lot of ear pain and sometimes more pain in the head area..I had a ct scan done in emergency department but wasn't told results other than a horrible concussion. And this was 3 weeks ago..does anyone know of tumors moving or dissolving in scenarios like this?

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@kfs

Can a brain tumor move from a hard hot to the head?..I fell on the ice and hit the back of my head so hard a front tooth popped out.i hit it almost exactly where my glomus tumor is located and I'm having a lot of ear pain and sometimes more pain in the head area..I had a ct scan done in emergency department but wasn't told results other than a horrible concussion. And this was 3 weeks ago..does anyone know of tumors moving or dissolving in scenarios like this?

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That's an interesting question about whether significant force can move a brain tumor, @kfs.

I moved your post on glomus brain tumor here to an existing discussion on this subject where you were participating before so that you can talk with others who can relate.

Have you been back to your neurologist or neurosurgeon since the head hit on the ice, @kfs? If so, what did they say about any impact on the tumor?

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