Oh I'm so sorry! In the past months, my vocabulary has increased w words I had no clue what they meant, let alone able to pronounce them! Now I rattle off carotid body paraganglioma like it's nothing.
By CBT, I meant carotid body tumor. I'm sorry! Wishing you the very best.
I'm 70 yrs old, happened to mention to my GP that sometimes I would wake up in the night with a rapid, strong heartbeat, anxiousness, a little dizzy. (Has been going on for years, but by the next day it was forgotten about) This would go away in a few minutes, and I'd go back to sleep. GP, then Cardiologist, and when I said it seems like a mild adrenalin rush, to an endo doc. Took 6 months of urine tests, 2 MRI's to finally point to a "growth" next to the left side adrenal gland. Met with surgeon a few weeks ago, he described what it was, a paraganglioma, and discussed removal. I asked if that was necessary, sure is! Can't keep dumping adrenalin into your body. His specialty is endo surgery, asked him how many of these he has operated on, "to date? none"! Evidently they are very rare, like 1.7 per million people.
A few people have said that I should look for someone who has done this operation before, but I figure he needs to get his first one somewhere. The aim is laproscopic, but he said it might end up having to open up normally. Two worries about it, it is right next to a major blood vessel, and the tumors can get pissed when you mess with them and dump a lot of adrenalin, stopping your heart. Lovely. I have read in several places that they try to stop the hormone production before surgery with drugs, and he's using an alpha blocker. From what I can gather, they judge how well that is working by monitoring my blood pressure, which isn't going down as much as desired. With 3 weeks to go, I'm wondering if they will try something else.
I'm 70 yrs old, happened to mention to my GP that sometimes I would wake up in the night with a rapid, strong heartbeat, anxiousness, a little dizzy. (Has been going on for years, but by the next day it was forgotten about) This would go away in a few minutes, and I'd go back to sleep. GP, then Cardiologist, and when I said it seems like a mild adrenalin rush, to an endo doc. Took 6 months of urine tests, 2 MRI's to finally point to a "growth" next to the left side adrenal gland. Met with surgeon a few weeks ago, he described what it was, a paraganglioma, and discussed removal. I asked if that was necessary, sure is! Can't keep dumping adrenalin into your body. His specialty is endo surgery, asked him how many of these he has operated on, "to date? none"! Evidently they are very rare, like 1.7 per million people.
A few people have said that I should look for someone who has done this operation before, but I figure he needs to get his first one somewhere. The aim is laproscopic, but he said it might end up having to open up normally. Two worries about it, it is right next to a major blood vessel, and the tumors can get pissed when you mess with them and dump a lot of adrenalin, stopping your heart. Lovely. I have read in several places that they try to stop the hormone production before surgery with drugs, and he's using an alpha blocker. From what I can gather, they judge how well that is working by monitoring my blood pressure, which isn't going down as much as desired. With 3 weeks to go, I'm wondering if they will try something else.
Hello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder and your questions about upcoming surgery.
Getting a second opinion before making a decision on surgery is always a good idea. I got three opinions prior to making a decision on surgery for a neuroendocrine tumor in the digestive tract and I'm glad that I did.
I'm not sure where you are located, but you might try to seek another opinion from a health center that has specialists such as Mayo Clinic. Mayo has three locations and if you don't live nearby one of those locations (Minnesota, Florida and Arizona), you might be able to arrange a virtual consultation. Here is a link with appointment information, http://mayocl.in/1mtmR63.
If an appointment at Mayo Clinic is not an option for any reason, then it might be good to look for a university medical school nearby to find a doctor who is experienced in this type of surgery.
Hello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder and your questions about upcoming surgery.
Getting a second opinion before making a decision on surgery is always a good idea. I got three opinions prior to making a decision on surgery for a neuroendocrine tumor in the digestive tract and I'm glad that I did.
I'm not sure where you are located, but you might try to seek another opinion from a health center that has specialists such as Mayo Clinic. Mayo has three locations and if you don't live nearby one of those locations (Minnesota, Florida and Arizona), you might be able to arrange a virtual consultation. Here is a link with appointment information, http://mayocl.in/1mtmR63.
If an appointment at Mayo Clinic is not an option for any reason, then it might be good to look for a university medical school nearby to find a doctor who is experienced in this type of surgery.
@wilhelm I strongly agree w Teresa, Volunteer Mentor. When my NET on my carotid artery was discovered, I did a lot of research at hospitals all over the country as to where they handle this sort of thing. I live in north Idaho; no one is "experienced" w this in my area, even as far away as Seattle or Portland. I thought about it like u did, "well it needs taken care of" then asked myself if I'd have someone remove my tonsils who had done it once? Or have them set a complex fracture if they'd only done it once? Would I have my GP handle this? All self-answers were a gigantic 'of course not'. Each person has to make their own decision. For me having my rare tumor taken care of by someone who would be essentially learning as they go, scared the heck out of me!
Hello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder and your questions about upcoming surgery.
Getting a second opinion before making a decision on surgery is always a good idea. I got three opinions prior to making a decision on surgery for a neuroendocrine tumor in the digestive tract and I'm glad that I did.
I'm not sure where you are located, but you might try to seek another opinion from a health center that has specialists such as Mayo Clinic. Mayo has three locations and if you don't live nearby one of those locations (Minnesota, Florida and Arizona), you might be able to arrange a virtual consultation. Here is a link with appointment information, http://mayocl.in/1mtmR63.
If an appointment at Mayo Clinic is not an option for any reason, then it might be good to look for a university medical school nearby to find a doctor who is experienced in this type of surgery.
I'm in upper New York state, and the surgeon is at Albany Medical Center, a teaching and research hospital. His specialty is endocrine and robotic surgery, and has dealt with the tumor being part of the adrenal gland (don't remember the name for that), but has not dealt with the tumor outside of the gland. As I said earlier, if everyone shies away from a doc because he has never done it before, there wouldn't be many experienced ones! As far as a second opinion, the only outcome I could see there is, operate or not? This thing is affecting my health in several ways, and is slowly getting more pronounced. I wrote here not so much because I'm worried, I saw the original question and figured I would give my story.
I'm in upper New York state, and the surgeon is at Albany Medical Center, a teaching and research hospital. His specialty is endocrine and robotic surgery, and has dealt with the tumor being part of the adrenal gland (don't remember the name for that), but has not dealt with the tumor outside of the gland. As I said earlier, if everyone shies away from a doc because he has never done it before, there wouldn't be many experienced ones! As far as a second opinion, the only outcome I could see there is, operate or not? This thing is affecting my health in several ways, and is slowly getting more pronounced. I wrote here not so much because I'm worried, I saw the original question and figured I would give my story.
Hi Teresa, surgery is scheduled for Nov. 22nd, I'm meeting with the doc and others this Thursday to go over questions I have, and pre-op testing. I tend to be inquisitive in how things work, in the past I would not ask many questions, but as I get older I'm like what the heck, ask. Be glad to update with what I find out, and after the operation if you would be interested.
Hi Teresa, surgery is scheduled for Nov. 22nd, I'm meeting with the doc and others this Thursday to go over questions I have, and pre-op testing. I tend to be inquisitive in how things work, in the past I would not ask many questions, but as I get older I'm like what the heck, ask. Be glad to update with what I find out, and after the operation if you would be interested.
I'm glad you have a list of questions, being inquisitive is part of being proactive. On Mayo Connect we discuss how to have a successful doctor's appointment. Here is a link to that discussion:
--Keys to a Successful Doctor's Appointment, the link, https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
I hope you take a look at this discussion, it might provide you with additional information. I look forward to hearing from you after your appointment on Thursday.
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Oh I'm so sorry! In the past months, my vocabulary has increased w words I had no clue what they meant, let alone able to pronounce them! Now I rattle off carotid body paraganglioma like it's nothing.
By CBT, I meant carotid body tumor. I'm sorry! Wishing you the very best.
-
Like -
Helpful -
Hug
2 ReactionsI'm 70 yrs old, happened to mention to my GP that sometimes I would wake up in the night with a rapid, strong heartbeat, anxiousness, a little dizzy. (Has been going on for years, but by the next day it was forgotten about) This would go away in a few minutes, and I'd go back to sleep. GP, then Cardiologist, and when I said it seems like a mild adrenalin rush, to an endo doc. Took 6 months of urine tests, 2 MRI's to finally point to a "growth" next to the left side adrenal gland. Met with surgeon a few weeks ago, he described what it was, a paraganglioma, and discussed removal. I asked if that was necessary, sure is! Can't keep dumping adrenalin into your body. His specialty is endo surgery, asked him how many of these he has operated on, "to date? none"! Evidently they are very rare, like 1.7 per million people.
A few people have said that I should look for someone who has done this operation before, but I figure he needs to get his first one somewhere. The aim is laproscopic, but he said it might end up having to open up normally. Two worries about it, it is right next to a major blood vessel, and the tumors can get pissed when you mess with them and dump a lot of adrenalin, stopping your heart. Lovely. I have read in several places that they try to stop the hormone production before surgery with drugs, and he's using an alpha blocker. From what I can gather, they judge how well that is working by monitoring my blood pressure, which isn't going down as much as desired. With 3 weeks to go, I'm wondering if they will try something else.
-
Like -
Helpful -
Hug
1 ReactionHello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder and your questions about upcoming surgery.
Getting a second opinion before making a decision on surgery is always a good idea. I got three opinions prior to making a decision on surgery for a neuroendocrine tumor in the digestive tract and I'm glad that I did.
I'm not sure where you are located, but you might try to seek another opinion from a health center that has specialists such as Mayo Clinic. Mayo has three locations and if you don't live nearby one of those locations (Minnesota, Florida and Arizona), you might be able to arrange a virtual consultation. Here is a link with appointment information, http://mayocl.in/1mtmR63.
If an appointment at Mayo Clinic is not an option for any reason, then it might be good to look for a university medical school nearby to find a doctor who is experienced in this type of surgery.
Is it possible for you to seek another opinion?
-
Like -
Helpful -
Hug
2 Reactions@wilhelm I strongly agree w Teresa, Volunteer Mentor. When my NET on my carotid artery was discovered, I did a lot of research at hospitals all over the country as to where they handle this sort of thing. I live in north Idaho; no one is "experienced" w this in my area, even as far away as Seattle or Portland. I thought about it like u did, "well it needs taken care of" then asked myself if I'd have someone remove my tonsils who had done it once? Or have them set a complex fracture if they'd only done it once? Would I have my GP handle this? All self-answers were a gigantic 'of course not'. Each person has to make their own decision. For me having my rare tumor taken care of by someone who would be essentially learning as they go, scared the heck out of me!
-
Like -
Helpful -
Hug
2 ReactionsI'm in upper New York state, and the surgeon is at Albany Medical Center, a teaching and research hospital. His specialty is endocrine and robotic surgery, and has dealt with the tumor being part of the adrenal gland (don't remember the name for that), but has not dealt with the tumor outside of the gland. As I said earlier, if everyone shies away from a doc because he has never done it before, there wouldn't be many experienced ones! As far as a second opinion, the only outcome I could see there is, operate or not? This thing is affecting my health in several ways, and is slowly getting more pronounced. I wrote here not so much because I'm worried, I saw the original question and figured I would give my story.
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Like -
Helpful -
Hug
2 ReactionsI appreciate you sharing your story, @wilhelm. Do you have a surgery date already scheduled?
Will you continue to post and let me know how you are doing?
Hi Teresa, surgery is scheduled for Nov. 22nd, I'm meeting with the doc and others this Thursday to go over questions I have, and pre-op testing. I tend to be inquisitive in how things work, in the past I would not ask many questions, but as I get older I'm like what the heck, ask. Be glad to update with what I find out, and after the operation if you would be interested.
-
Like -
Helpful -
Hug
3 ReactionsHello @wilhelm
I'm glad you have a list of questions, being inquisitive is part of being proactive. On Mayo Connect we discuss how to have a successful doctor's appointment. Here is a link to that discussion:
--Keys to a Successful Doctor's Appointment, the link,
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
I hope you take a look at this discussion, it might provide you with additional information. I look forward to hearing from you after your appointment on Thursday.