I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
I'm bringing in @vkoonz@larak@gsm13161@coachv and others into this discussion to share their experiences with diagnosing a paraganglioma and testing with you.
@megtrich, you mentioned that your team is moving quickly. Do you have any update? Will you get a second opinion at Mayo Clinic? How are you doing?
Well, 6 days after having the paraganglioma removed, very happy! We traveled to Tampa on the 9th, and went to the hospital on the 10th, very early, 5:30 am. The facility is very well run, from front desk, check-in, the pre-op area, all the staff is capable, friendly, willing to answer any questions. The facility is only 3 years old, all equipment is top of the line. A CT scan is done to get a current pic of what is going on. My 10th surgery, I've always enjoyed the "happy juice" they give you to relax you, it's the old hippy in me. I don't know when they slipped me something, all I remember is being wheeled out of the pre-op area, next thing I know it's 2 hours later and I'm in the recovery area. The actual surgery was less than 30 minutes! The overnight stay was also great, nurses very capable, single room, everything clean. Meals were hospital grade, what can I say. All costs were covered by medicare and my secondary insurance. I cannot be more pleased that I went this route. I've learned from previous surgeries, get up and move about as soon as possible, I was walking the halls 4 hours after the surgery, and did so every couple of hours, all thru the night (can't sleep worth a crap in a hospital). Flew home 2 days later, not too painful. Now, 6 days later, very impressive black and blue area bigger than my open hand, but pain has been handled very well with just OTC drugs. See my endo doc this Friday for review. If I didn't mention it before, the Dr was Tobias Carling, website is adrenal dot com, he is only adrenal, but there are others there who specialize in other endo gland surgery.
I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
megtrich, the symptoms you describe were similer for me, anxiety, sweaty in chest area, and several times of extreme tremors. In May my endo doc ordered an MRI of adrenal gland, which the radiologist read as normal, even though I had a 3 cm paraganglioma actually attached to my adrenal gland! Months later a larger area was scanned, and found it, they went back and looked at earlier MRI, it showed up there also, so don't be afraid to ask for other eyes to look at tests. My 24 hr urine test was way high in metanephrines, like 4 times the normal high limit. We are waiting on pathology results, but I was told that the paragangliomas usually are benign, so hopefully this is what will be your case. Keep us informed!
"Plan for the CBT on my carotid artery." Could you explain what "CBT" means, please? Tried to look it up and all I can find is "cognitive behavioral therapy"?
@56pan
Hello I just found this forum. I believe CBT stands for carotid body tumor. I had a paraganglioma found in my skull base in 2012 Mayo in AZ said don’t do anything, this year I had swelling in my neck and severe symptoms falling over splitting my head, dizziness headaches memory problems popping swishing in my ear heartbeats rapid pulse episodes and pounding in my chest that was very uncomfortable throbbing in my neck. So Tampa General said no surgery you will be paralyzed in some capacity, Mayo said I’m fine😔 I had radiation on my CBT it grew 1.5 cms and now I have another lump in my right neck that has shown up on scans since January I creasing in size even thoughts are saying g oh it’s nothing a lymph node or submandibular gland. Well it went from mm’s to cm’s and I want to know if I am one of the 30-50% that have bilateral tumors. I talked with Stanford and they said watch and wait for a year. No thanks. I have an appt with UT southwestern in Dallas and i plan on going back to Mayo in AZ to see what their opinion is, in the meantime I read up on Lutathera for benign tumors to shrink them to make the surgical outcome more favorable. Any help is appreciated and if I can help anyone here we have to be sure our co Siri on is so rare no Dr seems to know how to deal with these and we wait and more problems occur. 🙏💞
I was diagnosed after colon cancer PET in 2012 with a parapharangeal ganglioma saw Dr Hinni at Mayo in az he said leave it alone until I can’t swallow anymore. So fast forward symptomatic headaches falling over tipping hitting splitting my head popping swooshing in my ear painful tinnitus heart pounding episodes of orb my pulse rapid very scary crying all the time and this year a new sweeping revealed carotid body tumor bifurcating the carotid and jugular which sucks. Very dangerous and risky to graft these structures , I did radiation on it and it still grew, my right neck has had a lump growing since Jan and after looking into the journals of vascular surgery I learned that 30-50% of people with carotid body tumors have them bilaterally r on both sides of the neck thought I need to move fast before this is grows out of hand. I have an appt in Dallas at ut southwestern and I plan on going back to Mayo to see what they think. I wasn’t able to stay working because I was handlignbdharp tools assisting surgeries and wonder what the future looks like with these symptoms. I was hoping someone would cut out this is like on my right side and help remove the carotid body tumor n the left side. It’s a lonely place to be when drs don’t have experience in these tumors and just tells you to wait or oh it’s too risky. I signed up for a clinical trial in Bethesda MD as they are treating benign tumors with Lutathera to help shrink the tumors before surgery. Who knows I’m hopeful but wish something else would come along to help those of us that have these rare issues.😔
Yes. Parapharangeal ganglioma at the skull base now a carotid body tumor bifurcating carotid and jugular, and now another lump appeared and seems to be growing on left neck and nobody wants to do anything about it,
Yes. Parapharangeal ganglioma at the skull base now a carotid body tumor bifurcating carotid and jugular, and now another lump appeared and seems to be growing on left neck and nobody wants to do anything about it,
@taracronwall
Can you please send the link to the vascular surgery journal saying these are bilateral 30-50% of the time? I had my CBT on the right side bifurcation removed by Mayo Rochester July 2025. Head and neck cancer surgeon on the surgical team said my carotid arteries did a weird 'loopty-lou', but not 'significantly' retropharyngeal. Confusing to me, because its path is either behind/in back of the throat or its not?! I still have a globus sensation now nearly 6 mos after resection of the tumor. Additionally now BOTH sides of my throat are sore w some lumps (I suspect lymph nodes; they took 1 large benign lymph node when they took the
tumor). My non-medical logic tells me the 'loopty-lou-ing' indicated the CBT was working at becoming bilateral. Everything I've read says very few have these neck CBTs on both sides, so I'd be interested in that vascular surgery journal link. Have been back to Mayo post-op and a throat scope done showing no obstruction, though it feels like a (growing) wad of gauze was left behind. Keeping them updated through Epic MyChart every 8 wks. Mid-Jan I'll have to tell them its now on both sides (pain, lumps, ear pain).
Thx for sharing, and best to you!
@taracronwall
Can you please send the link to the vascular surgery journal saying these are bilateral 30-50% of the time? I had my CBT on the right side bifurcation removed by Mayo Rochester July 2025. Head and neck cancer surgeon on the surgical team said my carotid arteries did a weird 'loopty-lou', but not 'significantly' retropharyngeal. Confusing to me, because its path is either behind/in back of the throat or its not?! I still have a globus sensation now nearly 6 mos after resection of the tumor. Additionally now BOTH sides of my throat are sore w some lumps (I suspect lymph nodes; they took 1 large benign lymph node when they took the
tumor). My non-medical logic tells me the 'loopty-lou-ing' indicated the CBT was working at becoming bilateral. Everything I've read says very few have these neck CBTs on both sides, so I'd be interested in that vascular surgery journal link. Have been back to Mayo post-op and a throat scope done showing no obstruction, though it feels like a (growing) wad of gauze was left behind. Keeping them updated through Epic MyChart every 8 wks. Mid-Jan I'll have to tell them its now on both sides (pain, lumps, ear pain).
Thx for sharing, and best to you!
I had it in my random my laptop but lost them somehow 🤦🏻♀️🤦🏻♀️🤦🏻♀️I’ll do a deep dive to see if I can dig them up. I think I was looking into paraganglioma with carotid body tumor bifurcating carotid and jugular. Then the bilateral patient was found showing the lumps in her neck and the surgical intervention. Give me some time to do some digging, and it’s good for my oncologists who don’t know the stats on these tumors.
"Plan for the CBT on my carotid artery." Could you explain what "CBT" means, please? Tried to look it up and all I can find is "cognitive behavioral therapy"?
@56pan
Carotid body tumor.
They are rare, I had a parapharangeal ganglioma at my skull base backing 2012 Mayo in AZ said come back when you have more severe problems symptoms like you can’t swallow anymore. Well over the years that’s happened, I e adjusted but this year a lump appeared and it took a lot of different doctors and diagnostics to diagnose me with a carotid body tumor bifurcating the carotid artery and jugular vein, which kind of sucks because of how dangerous a resection can be grafting veins🥴 but it’s causing all kinds of problems, the heart racing and rapid deep pulsing dizziness ripping over splitting my head crying g outbursts ear popping g clocking swooshing migraines vision weirdness choking on food memory problems high blood pressure spikes when mine is usually normal low. All doctors are telling g me to just watch and wait but it’s already grown 1.5 cms bigger after radiation. I have a lump on the right side that has been growing since the beginning of the year from mm’s to cm’s now that most docs have chalked up to a lymph node or a submandibular gland but it keeps growing. 🤦🏻♀️ signed up for clinical trial for Lutathera to see if I can shrink these tumors before they get out of control and also if it works surgery can be a lot less risky if the tumors are smaller.
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I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
I'm bringing in @vkoonz @larak @gsm13161 @coachv and others into this discussion to share their experiences with diagnosing a paraganglioma and testing with you.
@megtrich, you mentioned that your team is moving quickly. Do you have any update? Will you get a second opinion at Mayo Clinic? How are you doing?
Well, 6 days after having the paraganglioma removed, very happy! We traveled to Tampa on the 9th, and went to the hospital on the 10th, very early, 5:30 am. The facility is very well run, from front desk, check-in, the pre-op area, all the staff is capable, friendly, willing to answer any questions. The facility is only 3 years old, all equipment is top of the line. A CT scan is done to get a current pic of what is going on. My 10th surgery, I've always enjoyed the "happy juice" they give you to relax you, it's the old hippy in me. I don't know when they slipped me something, all I remember is being wheeled out of the pre-op area, next thing I know it's 2 hours later and I'm in the recovery area. The actual surgery was less than 30 minutes! The overnight stay was also great, nurses very capable, single room, everything clean. Meals were hospital grade, what can I say. All costs were covered by medicare and my secondary insurance. I cannot be more pleased that I went this route. I've learned from previous surgeries, get up and move about as soon as possible, I was walking the halls 4 hours after the surgery, and did so every couple of hours, all thru the night (can't sleep worth a crap in a hospital). Flew home 2 days later, not too painful. Now, 6 days later, very impressive black and blue area bigger than my open hand, but pain has been handled very well with just OTC drugs. See my endo doc this Friday for review. If I didn't mention it before, the Dr was Tobias Carling, website is adrenal dot com, he is only adrenal, but there are others there who specialize in other endo gland surgery.
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1 Reactionmegtrich, the symptoms you describe were similer for me, anxiety, sweaty in chest area, and several times of extreme tremors. In May my endo doc ordered an MRI of adrenal gland, which the radiologist read as normal, even though I had a 3 cm paraganglioma actually attached to my adrenal gland! Months later a larger area was scanned, and found it, they went back and looked at earlier MRI, it showed up there also, so don't be afraid to ask for other eyes to look at tests. My 24 hr urine test was way high in metanephrines, like 4 times the normal high limit. We are waiting on pathology results, but I was told that the paragangliomas usually are benign, so hopefully this is what will be your case. Keep us informed!
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Hug
1 Reaction@56pan
Hello I just found this forum. I believe CBT stands for carotid body tumor. I had a paraganglioma found in my skull base in 2012 Mayo in AZ said don’t do anything, this year I had swelling in my neck and severe symptoms falling over splitting my head, dizziness headaches memory problems popping swishing in my ear heartbeats rapid pulse episodes and pounding in my chest that was very uncomfortable throbbing in my neck. So Tampa General said no surgery you will be paralyzed in some capacity, Mayo said I’m fine😔 I had radiation on my CBT it grew 1.5 cms and now I have another lump in my right neck that has shown up on scans since January I creasing in size even thoughts are saying g oh it’s nothing a lymph node or submandibular gland. Well it went from mm’s to cm’s and I want to know if I am one of the 30-50% that have bilateral tumors. I talked with Stanford and they said watch and wait for a year. No thanks. I have an appt with UT southwestern in Dallas and i plan on going back to Mayo in AZ to see what their opinion is, in the meantime I read up on Lutathera for benign tumors to shrink them to make the surgical outcome more favorable. Any help is appreciated and if I can help anyone here we have to be sure our co Siri on is so rare no Dr seems to know how to deal with these and we wait and more problems occur. 🙏💞
I was diagnosed after colon cancer PET in 2012 with a parapharangeal ganglioma saw Dr Hinni at Mayo in az he said leave it alone until I can’t swallow anymore. So fast forward symptomatic headaches falling over tipping hitting splitting my head popping swooshing in my ear painful tinnitus heart pounding episodes of orb my pulse rapid very scary crying all the time and this year a new sweeping revealed carotid body tumor bifurcating the carotid and jugular which sucks. Very dangerous and risky to graft these structures , I did radiation on it and it still grew, my right neck has had a lump growing since Jan and after looking into the journals of vascular surgery I learned that 30-50% of people with carotid body tumors have them bilaterally r on both sides of the neck thought I need to move fast before this is grows out of hand. I have an appt in Dallas at ut southwestern and I plan on going back to Mayo to see what they think. I wasn’t able to stay working because I was handlignbdharp tools assisting surgeries and wonder what the future looks like with these symptoms. I was hoping someone would cut out this is like on my right side and help remove the carotid body tumor n the left side. It’s a lonely place to be when drs don’t have experience in these tumors and just tells you to wait or oh it’s too risky. I signed up for a clinical trial in Bethesda MD as they are treating benign tumors with Lutathera to help shrink the tumors before surgery. Who knows I’m hopeful but wish something else would come along to help those of us that have these rare issues.😔
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1 ReactionYes. Parapharangeal ganglioma at the skull base now a carotid body tumor bifurcating carotid and jugular, and now another lump appeared and seems to be growing on left neck and nobody wants to do anything about it,
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3 Reactions@taracronwall
Can you please send the link to the vascular surgery journal saying these are bilateral 30-50% of the time? I had my CBT on the right side bifurcation removed by Mayo Rochester July 2025. Head and neck cancer surgeon on the surgical team said my carotid arteries did a weird 'loopty-lou', but not 'significantly' retropharyngeal. Confusing to me, because its path is either behind/in back of the throat or its not?! I still have a globus sensation now nearly 6 mos after resection of the tumor. Additionally now BOTH sides of my throat are sore w some lumps (I suspect lymph nodes; they took 1 large benign lymph node when they took the
tumor). My non-medical logic tells me the 'loopty-lou-ing' indicated the CBT was working at becoming bilateral. Everything I've read says very few have these neck CBTs on both sides, so I'd be interested in that vascular surgery journal link. Have been back to Mayo post-op and a throat scope done showing no obstruction, though it feels like a (growing) wad of gauze was left behind. Keeping them updated through Epic MyChart every 8 wks. Mid-Jan I'll have to tell them its now on both sides (pain, lumps, ear pain).
Thx for sharing, and best to you!
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Hug
2 Reactions@gangcarotid1
I had it in my random my laptop but lost them somehow 🤦🏻♀️🤦🏻♀️🤦🏻♀️I’ll do a deep dive to see if I can dig them up. I think I was looking into paraganglioma with carotid body tumor bifurcating carotid and jugular. Then the bilateral patient was found showing the lumps in her neck and the surgical intervention. Give me some time to do some digging, and it’s good for my oncologists who don’t know the stats on these tumors.
@56pan
Carotid body tumor.
They are rare, I had a parapharangeal ganglioma at my skull base backing 2012 Mayo in AZ said come back when you have more severe problems symptoms like you can’t swallow anymore. Well over the years that’s happened, I e adjusted but this year a lump appeared and it took a lot of different doctors and diagnostics to diagnose me with a carotid body tumor bifurcating the carotid artery and jugular vein, which kind of sucks because of how dangerous a resection can be grafting veins🥴 but it’s causing all kinds of problems, the heart racing and rapid deep pulsing dizziness ripping over splitting my head crying g outbursts ear popping g clocking swooshing migraines vision weirdness choking on food memory problems high blood pressure spikes when mine is usually normal low. All doctors are telling g me to just watch and wait but it’s already grown 1.5 cms bigger after radiation. I have a lump on the right side that has been growing since the beginning of the year from mm’s to cm’s now that most docs have chalked up to a lymph node or a submandibular gland but it keeps growing. 🤦🏻♀️ signed up for clinical trial for Lutathera to see if I can shrink these tumors before they get out of control and also if it works surgery can be a lot less risky if the tumors are smaller.
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Like -
Helpful -
Hug
1 Reaction