@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.
@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.
@taracronwall
The day before I had my paraganglioma removed at Mayo Rochester, they did a femoral vein embolization, also embolization in the artery in my wrist.one embolization had a coil the other was the 'driver'. I was under conscious sedation (they called it conscious gentle sedation, but nothing gentle about it. I was groggily awake thru it all. They did this to reroute the blood supply away from the tumor, yet still provide adequate blood to my brain. They asked me various questions thru the process of moving the coil up thru my abdomen, thru my heart, thru my neck...all of which I could feel moving... questions like, What city are we in, What is your husband's name, Wiggle your right smallest toe, Repeat these colors...etc. to make sure the reroute would not affect my brain function. I know some folks who've had a CBT removed in their neck w/o this being done, and they ended up w drooping facial muscles, or drooping eyelid, or slur in speech. I have none of those things. Just sayin'...
"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"?
To jls77
It sounds like you're wanting to know about people's experiences w paragangliomas. In April I had very swollen lymph glands on left side of neck. Antibiotics relieved that in a week, but a CT w contrast was done..is serious to only have glands majorly swollen on 1 side. CT of neck was symmetrical; a carotid body paraganglioma was found on RIGHT side, on the V (bifurcation) of the carotid artery, about 1.5 cm. I live in north Idaho; no one w/in 1000 mi who deals w these. As soon as ENT I was referred to said the word -biopsy' I shut him out and left when he stopped talking. WORST thing to do on carotid artery NETs is biopsy....makes them 'angry'. Researched all over US, and got signed up to see Endocrine dept. All members of triage team believe is benign. But something was causing hypertension, dizziness, fatigue,, so did full body CT w contrast and found 2 tumors on left kidney. Once I became Mayo Rochester patient, the ball started rolling more quickly. The Urology dept said was most likely malignant, and 85% chance of radical nephrectomy. Then wks b4 scheduled surgery, surgeon called (on a Sat!!) to say he believed he had a 95% possibility could save the kidney! No guarantees of course, but Wow!
Had surgery; got 100% of both tumors. Adrenal glands and bladder had no evidence of cancer. Will be going back in Jan for post-op CT w contrast & lab work & consults. No chemo or radiation. Am on a 30-day, nonfat (40 gr/day) chyle diet to keep lymph & white blood cells from getting overloaded with naturally produced chyle and keep healing lymphatic system from getting too much chyle, and causing a leak. No guarantee it'll never recur, but I just got a miracle and I'll do whatever they prescribe for the best optimal continued results. We'll be going back this next Spring to make a Plan for the CBT on my carotid artery. I may have an incision that looks like an autopsy was done, along w what looks like a stab wound from drain hole, but ask me if I care!
Wishing u the very best!
@gangcarotid1
Hello, just read your notes this morning. How are you doing?
I also have a PPGL in the same spot in my right neck, diagnosed CT with and without contrast. Evidently has been there for a year or more. Several physicians diagnosed as swollen lymph node from an abscessed right back lower molar that had a filling put in after tooth pain - but actually needed a root canal or extraction.
Oral surgeon suggested the CT Scan as he suspected something else going on. Paraganglioma was in the exact same area and I guess growing, as it is. ow Shamblin III. Plasma tests in Dec 2025 showed normal, so currently just “under surveillance” with repeat tests early summer. Annual mammogram diagnosed breast cancer, and having a lumpectomy May 5th. Anyone else having cancer surgery with an existing PPGL in right neck? I am worried about the General Anesthesia more than the breast surgery. Thanks to all of you on the forum! Your notes and experiences are very helpful!
@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.
@taracronwall
Hello, it’s mid April 2026, and would love to know how all of us with a paraganglioma right neck in the “Y” are doing? Prayers for everyone and hope for the best!
I’m in Watchful Waiting, as 76 years young, and my 5 cm benign tumor just showed up last year!
Thanks for everyone’s notes and support, means a lot! Breast surgery fall of 2013 Mayo Rochester, and they are awesome! Hugs, Suzanne
Hi Suzanne. I also HAD a right neck paraganglioma. I am 70. Was 69 last yr July when it was resected. All went well w the surgery, but I am still dealing w dysphagia, and numbness below my right side jaw. No drooping muscles, though, and benign tumor is gone. Had thyroid biopsy 2 wks ago, and am wondering if the dysphagia is partially being caused by all the thyroid nodules.
"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"?
Hi Suzanne. I also HAD a right neck paraganglioma. I am 70. Was 69 last yr July when it was resected. All went well w the surgery, but I am still dealing w dysphagia, and numbness below my right side jaw. No drooping muscles, though, and benign tumor is gone. Had thyroid biopsy 2 wks ago, and am wondering if the dysphagia is partially being caused by all the thyroid nodules.
@gangcarotid1
wow! amazing you had it resected was it a carotid body tumor? I have a carotid body tumor on left neck but stemmed from a parapharangeal skull base gangioma. I also have a lump in my right neck which was called a 2B lymph node on scans but it was written off by my radiation oncologist at Mofftt as a salivary gland, blahblah, its not her neck. Its gotten bigger from mm to cm's and my oncologist at Florida Cancer said not right and I should be watching all of my thyroid nodules because they are growing. Im not sure what Shamblin class I'd be but Im thinking at least a III because it bifiurcates the carotid and the jugular and it stems from the skull base which I understand can make it difficult and put you at risk for strokes and hemmorhage unless the tumor is embolized first which is I guess how they establish if they will embolize or not, wonder about a cerebroangiogram first to determine what ischemic changes have happened in the brain as mine have shown to have many changes. I hope Dr Hinni Can get the tumor removed and get some in the skyll base without moving my mandible and also get the suspicous other tumor(which could be a billateral carotid one as 30%of people that have them have them on both sides) and if there is little collateral damage Id be a happy camper to not have to worry about these every day of my life. Also those that have had surgery have your symptoms subsided at all??? Mine are tipping over hitting my head a lot, migraines, heartbeats in my ear, swooshing, painful tinnitis swelling throbbing diffficulty swallowing and choking on food, numbness in my left arm and 3 last fingers my concentration is for shit and my memory is going and its enough to make me a little battty as these symptoms some come and go and people say "oh you look fine like nothing is wrong with you!" :{
@taracronwall
The day before I had my paraganglioma removed at Mayo Rochester, they did a femoral vein embolization, also embolization in the artery in my wrist.one embolization had a coil the other was the 'driver'. I was under conscious sedation (they called it conscious gentle sedation, but nothing gentle about it. I was groggily awake thru it all. They did this to reroute the blood supply away from the tumor, yet still provide adequate blood to my brain. They asked me various questions thru the process of moving the coil up thru my abdomen, thru my heart, thru my neck...all of which I could feel moving... questions like, What city are we in, What is your husband's name, Wiggle your right smallest toe, Repeat these colors...etc. to make sure the reroute would not affect my brain function. I know some folks who've had a CBT removed in their neck w/o this being done, and they ended up w drooping facial muscles, or drooping eyelid, or slur in speech. I have none of those things. Just sayin'...
@gangcarotid1
I thank you so much for telling it like it is, not sugar coating anything, it worries me but if it helps outcome later, I can imagine more horrific dental procedures that Ive been through. I worry though that i might cough because I have bronchiectasis and anyone that has this knows in a cold environment its like eating ice cream too fast and having to cough and drowning in your own mucous if you lay down flat. How is this supposed to go for me? I dont know Im very scared about this more than the procedure, but I do know the risks. I assume I will have to do the cerebroangiogram and the embolization to prevent stroke and or bleeding out. Ive had the skull base tumor since 2012 and the carotid body appeared last year fast. what is your swallowing function like and have any of your symptoms that the CBT gave you subsided at all? Thank you for your feedback.
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@taracronwall Thank your for that good explanation.
@taracronwall
The day before I had my paraganglioma removed at Mayo Rochester, they did a femoral vein embolization, also embolization in the artery in my wrist.one embolization had a coil the other was the 'driver'. I was under conscious sedation (they called it conscious gentle sedation, but nothing gentle about it. I was groggily awake thru it all. They did this to reroute the blood supply away from the tumor, yet still provide adequate blood to my brain. They asked me various questions thru the process of moving the coil up thru my abdomen, thru my heart, thru my neck...all of which I could feel moving... questions like, What city are we in, What is your husband's name, Wiggle your right smallest toe, Repeat these colors...etc. to make sure the reroute would not affect my brain function. I know some folks who've had a CBT removed in their neck w/o this being done, and they ended up w drooping facial muscles, or drooping eyelid, or slur in speech. I have none of those things. Just sayin'...
@56pan
Carotid body tumor
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3 Reactions@gangcarotid1
Hello, just read your notes this morning. How are you doing?
I also have a PPGL in the same spot in my right neck, diagnosed CT with and without contrast. Evidently has been there for a year or more. Several physicians diagnosed as swollen lymph node from an abscessed right back lower molar that had a filling put in after tooth pain - but actually needed a root canal or extraction.
Oral surgeon suggested the CT Scan as he suspected something else going on. Paraganglioma was in the exact same area and I guess growing, as it is. ow Shamblin III. Plasma tests in Dec 2025 showed normal, so currently just “under surveillance” with repeat tests early summer. Annual mammogram diagnosed breast cancer, and having a lumpectomy May 5th. Anyone else having cancer surgery with an existing PPGL in right neck? I am worried about the General Anesthesia more than the breast surgery. Thanks to all of you on the forum! Your notes and experiences are very helpful!
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Helpful -
Hug
1 Reaction@taracronwall
Hello, it’s mid April 2026, and would love to know how all of us with a paraganglioma right neck in the “Y” are doing? Prayers for everyone and hope for the best!
I’m in Watchful Waiting, as 76 years young, and my 5 cm benign tumor just showed up last year!
Thanks for everyone’s notes and support, means a lot! Breast surgery fall of 2013 Mayo Rochester, and they are awesome! Hugs, Suzanne
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1 ReactionHi Suzanne. I also HAD a right neck paraganglioma. I am 70. Was 69 last yr July when it was resected. All went well w the surgery, but I am still dealing w dysphagia, and numbness below my right side jaw. No drooping muscles, though, and benign tumor is gone. Had thyroid biopsy 2 wks ago, and am wondering if the dysphagia is partially being caused by all the thyroid nodules.
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Helpful -
Hug
3 Reactions@56pan
Carotid body tumor
@gangcarotid1 Understood. Thank you.
@gangcarotid1
wow! amazing you had it resected was it a carotid body tumor? I have a carotid body tumor on left neck but stemmed from a parapharangeal skull base gangioma. I also have a lump in my right neck which was called a 2B lymph node on scans but it was written off by my radiation oncologist at Mofftt as a salivary gland, blahblah, its not her neck. Its gotten bigger from mm to cm's and my oncologist at Florida Cancer said not right and I should be watching all of my thyroid nodules because they are growing. Im not sure what Shamblin class I'd be but Im thinking at least a III because it bifiurcates the carotid and the jugular and it stems from the skull base which I understand can make it difficult and put you at risk for strokes and hemmorhage unless the tumor is embolized first which is I guess how they establish if they will embolize or not, wonder about a cerebroangiogram first to determine what ischemic changes have happened in the brain as mine have shown to have many changes. I hope Dr Hinni Can get the tumor removed and get some in the skyll base without moving my mandible and also get the suspicous other tumor(which could be a billateral carotid one as 30%of people that have them have them on both sides) and if there is little collateral damage Id be a happy camper to not have to worry about these every day of my life. Also those that have had surgery have your symptoms subsided at all??? Mine are tipping over hitting my head a lot, migraines, heartbeats in my ear, swooshing, painful tinnitis swelling throbbing diffficulty swallowing and choking on food, numbness in my left arm and 3 last fingers my concentration is for shit and my memory is going and its enough to make me a little battty as these symptoms some come and go and people say "oh you look fine like nothing is wrong with you!" :{
@gangcarotid1
I thank you so much for telling it like it is, not sugar coating anything, it worries me but if it helps outcome later, I can imagine more horrific dental procedures that Ive been through. I worry though that i might cough because I have bronchiectasis and anyone that has this knows in a cold environment its like eating ice cream too fast and having to cough and drowning in your own mucous if you lay down flat. How is this supposed to go for me? I dont know Im very scared about this more than the procedure, but I do know the risks. I assume I will have to do the cerebroangiogram and the embolization to prevent stroke and or bleeding out. Ive had the skull base tumor since 2012 and the carotid body appeared last year fast. what is your swallowing function like and have any of your symptoms that the CBT gave you subsided at all? Thank you for your feedback.