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Does anyone have a glomus brain tumor (paraganglioma)?

Posted by kfs @kfs, Nov 30, 2019

Does anyone have a glomus brain tumor?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

kfs | @kfs | Jan 28, 2020
In reply to @lisalucier "Hi, @kfs - you'll note I moved your post on 2nd or 3rd opinions on glomus..." + (show)
@lisalucier

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?

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I went to a new neurologist who says he looked over my MRI from over a year ago and a ct scan from even longer ago and he said to me he doesn't understand why my previous neurologist got everyone all worked up for no reason and then looks at me and said ur cured from ur tumor..I was wanting another MRI period. Even if it shows it's gone then that's great but moving on to why these symptoms still exist..so I went back to my family dr and told her I want another opinion from another neurologist. We went over everything and she decided to send me to a oncologist since if they test again they would be the one I'd end up at..I'm glad she believes that I need clear answers and not double talk by this dr and ent and the other dr I saw at the cancer center

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kfs | @kfs | Jan 28, 2020
In reply to @jenniferhunter "@kfs I don't have experience with these tumors, but doctors need to look for what they..." + (show)
@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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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.

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kfs | @kfs | Jan 28, 2020
In reply to @hopeful33250 "Hello @kfs Your confusion is well understood by many of us on Connect. Conflicting opinions by..." + (show)
@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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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 30, 2020
In reply to @kfs "I would love to go somewhere like the mayo clinic but I can't afford it. I'm..." + (show)
@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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kfs | @kfs | Feb 18, 2020

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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leo23 | @leo23 | Apr 9, 2023

My wife had visual disturbance so we brought her to ED to seek medical attention and she was diagnosed with rare disease they called Paraganglioma . She had a history of stroke 20 yrs ago and had a stent placed @ St Joe’s 2002.So I don’t know where I have to begin with as far as who we have to see first?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 9, 2023
In reply to @leo23 "My wife had visual disturbance so we brought her to ED to seek medical attention and..." + (show)
@leo23

My wife had visual disturbance so we brought her to ED to seek medical attention and she was diagnosed with rare disease they called Paraganglioma . She had a history of stroke 20 yrs ago and had a stent placed @ St Joe’s 2002.So I don’t know where I have to begin with as far as who we have to see first?

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Welcome @leo23. I moved your message to this existing discussion so that you can connect easily with other members like @jls77 @kfs @mrruttinger1 and @saylor479 who have experience with paragamgliomas. Cick this link to see previous posts:
- Does anyone have a glomus brain tumor (paraganglioma)? https://connect.mayoclinic.org/discussion/glomus-brain-tumors-1/

Paragamgliomas are neuroendocrine related. Have you received a referral to a onco-neurologist or an expert specializing in neuroendocrine tumors?

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saylor479 | @saylor479 | Apr 17, 2023
In reply to @kfs "Yeah I have the one by the jugular and the neurosurgeon sent me to a bunch..." + (show)
@kfs

Yeah I have the one by the jugular and the neurosurgeon sent me to a bunch specialists before I was supposed to have it shrunk by radiation. The cancer institute did an MRI before treatment and said it was too insignificant to shrink so we're watching it..last year it was 1.43 centimeters. Its been a year since that MRI and my neurologist said we will do one if I'm having symptoms which is confusing because she said all my issues aren't related to the tumor itself so they're having me see a different neurologist in January. The only reason we found the tumor was because I get vestibular migraines and we were trying to stop the cycle of getting them for days and days without relief. And around that time I was getting a lot of vertigo to the point of falling over and I had to stop working. They discovered that that's caused by inner ear deficit. Currently for the last 6 weeks I've had various degrees of dizziness and migraines are happening a bit more as well as the pulsing in my ears and having more and more slurred speech and a lot of memory issues and using incorrect words and she said that these things aren't related to the tumor.

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I had radiation for this exact timg 1 year ago. All of your symptoms I have exactly as you have.
For the past year I have been noticing more and more that I am having short turm memory problems. They say it isn't related to my tumor or the radiation. My headaches are still rbe same.

I have lost the nerves that control one vocal cord and half my toung is paralyzed as well.

My headaches are excruciating I wish I had better news for you.

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