Glomus brain tumors (paraganglioma)

Posted by kfs @kfs, Nov 30, 2019

Does anyone have a glomus brain tumor

Hi @kfs, as you know, glomus tumors are also known as paragangliomas. Do you have a glomus jugulare tumor (near the temporal bone of the skull)? What treatment if any have you had?

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@colleenyoung

Hi @kfs, as you know, glomus tumors are also known as paragangliomas. Do you have a glomus jugulare tumor (near the temporal bone of the skull)? What treatment if any have you had?

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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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@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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You may be interested in this discussion related to dizziness and vestibular migraines:
– Chronic dizziness and vestibular migraines https://connect.mayoclinic.org/discussion/hello-_-my-name-is-kim-i-am-33-years-old-and/

There are also great discussions about many of the symptoms you talk about in the ENT group (https://connect.mayoclinic.org/group/ear-nose-throat-conditions/) and the Hearing Loss group (https://connect.mayoclinic.org/group/hearing-loss/) for example:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/
– Propriociption https://connect.mayoclinic.org/discussion/propriociption/

That's great that your neurologist scheduled to a second opinion with another neurologist in January. Did she explain why she feels your symptoms are not related to the tumor? What does she suspect?

Liked by Lisa Lucier

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The neurologist is convinced I'm "cured" from my symptoms minus tumor and migraine. I was sent to a balance specialist who determined I've got a significant deficit in my inner ear near the tumor.my neurologist has sent me to physical therapy for it and after a year I was doing way better but a few weeks ago I started getting dizziness episodes. And more migraines..when this all began in 2018 I had vertigo that sent me on this journey and my migraines completely went away. They didn't come back until last nov 2018 and have had them get worse over time.she increased my preventative med- amitriptyline to 75 mg..the tumor, the migraines and dizziness they feel is not affecting the tumor and said watch it and wait for symptoms b4 another MRI which confused me cuz those ARE the symptoms too

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@kfs

The neurologist is convinced I'm "cured" from my symptoms minus tumor and migraine. I was sent to a balance specialist who determined I've got a significant deficit in my inner ear near the tumor.my neurologist has sent me to physical therapy for it and after a year I was doing way better but a few weeks ago I started getting dizziness episodes. And more migraines..when this all began in 2018 I had vertigo that sent me on this journey and my migraines completely went away. They didn't come back until last nov 2018 and have had them get worse over time.she increased my preventative med- amitriptyline to 75 mg..the tumor, the migraines and dizziness they feel is not affecting the tumor and said watch it and wait for symptoms b4 another MRI which confused me cuz those ARE the symptoms too

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Hello, @kfs – sounds like it's really hard to parse out what is related to the tumor and what is not. The neurologist you are going to see in January — is this a neurologist who has a different focus than the other neurologist you've seen?

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@lisalucier

Hello, @kfs – sounds like it's really hard to parse out what is related to the tumor and what is not. The neurologist you are going to see in January — is this a neurologist who has a different focus than the other neurologist you've seen?

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It really is hard to decipher what is caused by what sometimes. I only saw the neurologist in January one time and he thought I was a new patient and didn't have any of my records with him..the regular dr I see is based in a town 2 hours away and the one in January travels here once a month. So he probably will have a different take on it if hes gone over them before he gets here.at this point I'm seriously thinking something could have changed. I'm really dizzy again after almost a year,my memory is getting worse and the pulsing in my ear is back but in the other ear..

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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

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@kfs

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

Jump to this post

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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@kfs

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

Jump to this post

@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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@kfs

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

Jump to this post

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?

REPLY
@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?

Jump to this post

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

Liked by Lisa Lucier

REPLY
@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

Jump to this post

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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@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?

Jump to this post

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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