Aa
Good health care provider in Bay Area for cardiac problems
Hi All,
The last time I wrote I seemed to be going in a better direction with the big K - seemed to have a good cardiologist.
However once again I've hit a stone wall, and now I think the doctor is trying to get rid of me.
I have chronic chest pain; GERD and esophageal problems were ruled out by trials on different GERD meds and a rather unpleasant endoscope procedure. I have been having, for the last 3 weeks or more, daily hours and hours long chest pain.
Nitro helps, but it comes back after a time.
I've also got an ascending aortic aneurysm last measured at 4.4cm; an aneurysm of the pulmonary artery measuring 4.5cm, and involvement of the aortic root on the aortic aneurysm. I have been communicating a lot with my cardiologist who just keeps denying any connection between my pain and my heart - even though nitro helps, and even though during periods of higher pain levels I get very noticeable palpitations and lots of skips.
Happens day or night, working or on vacation, stressed or happy. My dr's, because I think they are unwilling to go further to find the cause and get the pain really treated and improve my quality of life, have tried to pawn it off as stress issues, wanting me to get a psych eval.
So now their latest tactic has turned to doing the aortic MRI every two years - let me explain. I had the last MRI in Jan of this year. My cardiologist got back to me to let me know the measurement was 4.4 and was roughly stable from the last measurement.
I have seen countless references, and received general information from Cleveland Clinic that the MRI should be done, at the longest interval, yearly - no longer.
So they have changed this, seemingly arbitrarily without any further imaging since Jan to every other year, giving me a real WTF moment (pardon the implied language but I'm frustrated with Kaiser).
So Open Enrollment is soon and I have a choice of Blu Shield or a UC Health Plan where I may get access to Stanford.
How would you rate Kaiser, overall, for quality cardiac care? I have my own opinions given my history with them, but I'm looking for other stories, either in agreement with my experiences or counter to them. Maybe I'm just a "difficult" patient that I want answers, so they are trying to get rid of me or get me to request another new dr.
I do finally have copies of all my imaging studies, and other documents so I can take them to a new provider if necessary.
Sorry for the ramble.
What are your thoughts?
What would be the best option for me as far as health care providers go so I can get some quality care from doctors who actually listen?
Dave
The last time I wrote I seemed to be going in a better direction with the big K - seemed to have a good cardiologist.
However once again I've hit a stone wall, and now I think the doctor is trying to get rid of me.
I have chronic chest pain; GERD and esophageal problems were ruled out by trials on different GERD meds and a rather unpleasant endoscope procedure. I have been having, for the last 3 weeks or more, daily hours and hours long chest pain.
Nitro helps, but it comes back after a time.
I've also got an ascending aortic aneurysm last measured at 4.4cm; an aneurysm of the pulmonary artery measuring 4.5cm, and involvement of the aortic root on the aortic aneurysm. I have been communicating a lot with my cardiologist who just keeps denying any connection between my pain and my heart - even though nitro helps, and even though during periods of higher pain levels I get very noticeable palpitations and lots of skips.
Happens day or night, working or on vacation, stressed or happy. My dr's, because I think they are unwilling to go further to find the cause and get the pain really treated and improve my quality of life, have tried to pawn it off as stress issues, wanting me to get a psych eval.
So now their latest tactic has turned to doing the aortic MRI every two years - let me explain. I had the last MRI in Jan of this year. My cardiologist got back to me to let me know the measurement was 4.4 and was roughly stable from the last measurement.
I have seen countless references, and received general information from Cleveland Clinic that the MRI should be done, at the longest interval, yearly - no longer.
So they have changed this, seemingly arbitrarily without any further imaging since Jan to every other year, giving me a real WTF moment (pardon the implied language but I'm frustrated with Kaiser).
So Open Enrollment is soon and I have a choice of Blu Shield or a UC Health Plan where I may get access to Stanford.
How would you rate Kaiser, overall, for quality cardiac care? I have my own opinions given my history with them, but I'm looking for other stories, either in agreement with my experiences or counter to them. Maybe I'm just a "difficult" patient that I want answers, so they are trying to get rid of me or get me to request another new dr.
I do finally have copies of all my imaging studies, and other documents so I can take them to a new provider if necessary.
Sorry for the ramble.
What are your thoughts?
What would be the best option for me as far as health care providers go so I can get some quality care from doctors who actually listen?
Dave
Best Answer
You need to get the plan that gives you access to Stanford. Period, end of story. You need to be seen at their aortic clinic, the one that has Dr. Craig Miller. Go where there is an expert in your condition. This back-and-forth lack of consensus on the doctors' part and the lack of satisfaction on your part has been going on for years. Time to cut to the chase.
Sounds good. I think a high-quality subspecialist opinion is needed, even if you have to pay. I hate it that money has to be considered also, but sometimes the free opinions are just not helpful. You need an opinion from someone who evaluates great-vessel aneurysms on a daily basis, and that type of expertise is rare. There might not be more than a few dozen physicians in the country who have the type of expertise you need -- if that many. Some of them are located at CCF and Stanford, though.
Thanks again for your reply and support. I appreciate your opinion as it matches up with mine, which formulated from all the research I did on the various sites, previously mentioned in this thread (Cleveland Clinic, Mayo Clinic, UCLA; in other words reputable sites with accurate information).
I just wanted to make sure, before I go spending several hundred to thousands of dollars on a 2nd opinion that there is sufficient justification for said action. I think perhaps I will first start by contacting Cleveland Clinic and send them all the imaging etc unless Stanford has the same type of 2nd opinion program that Cleveland Clinic does, as my out of pocket should be somewhere between 20% of their service fee to as much as 800.00
Hate having to weigh in financials when considering something as serious as the aortic aneurysm & pulmonary aneurysm, but such are the times.
Again, thank you for weighing in - as I have had dialog with you I do trust your layman's opinions.
Kind regards,
~Dave
I just wanted to make sure, before I go spending several hundred to thousands of dollars on a 2nd opinion that there is sufficient justification for said action. I think perhaps I will first start by contacting Cleveland Clinic and send them all the imaging etc unless Stanford has the same type of 2nd opinion program that Cleveland Clinic does, as my out of pocket should be somewhere between 20% of their service fee to as much as 800.00
Hate having to weigh in financials when considering something as serious as the aortic aneurysm & pulmonary aneurysm, but such are the times.
Again, thank you for weighing in - as I have had dialog with you I do trust your layman's opinions.
Kind regards,
~Dave
Dave, I can only tell you that bigger people have bigger aortas. I think your aorta is probably bigger than "normal," even for a large-framed individual such as yourself. The real question, though, is whether you need surgery. Not every enlarged aorta requires surgery. As a layperson, I think the probable answer to that question (emphasise LAYPERSON and PROBABLE) is "not yet," but I'm not a doctor, and your presentation is not usual. What does your new cardiologist say? And if you feel the need for a second opinion, what about seeing someone on the thoracic aortic surgery team at Stanford?
I have uploaded the image in question as 'Friends Only" and sent you a friend request.
~Dave
~Dave
I have changed to a PPO health plan through my employer and seem to have a much better cardiologist who isn't driven by profit & loss motivation.
I have reviewed my chest MRI results from 1/2014, and the MRI that I've taught myself how to read as best as a layman can (having done considerable research with various sites like Cleveland Clinic, Stanford etc) that discuss how to read these things, it would seem looking at it from the spine forward that the ascending portion is more than 1.5X larger and narrows through the arch to a more normal looking diameter on the descending portion.
I wish I could attach the image I have, but from the scale on the image it looks to be between 4.6 and 4.8CM from each of the outer edges of the aorta that appear, looking in negative contrast.
One cardiologist suggested that may be normal for someone 6'3", but I have never been particularly athletic.
I am still on the atenolol and scheduled for another CT scan in 1/2016 with my new cardiologist.
Would you say my results are normal or abnormal for a healthy aorta?
~Dave
I have reviewed my chest MRI results from 1/2014, and the MRI that I've taught myself how to read as best as a layman can (having done considerable research with various sites like Cleveland Clinic, Stanford etc) that discuss how to read these things, it would seem looking at it from the spine forward that the ascending portion is more than 1.5X larger and narrows through the arch to a more normal looking diameter on the descending portion.
I wish I could attach the image I have, but from the scale on the image it looks to be between 4.6 and 4.8CM from each of the outer edges of the aorta that appear, looking in negative contrast.
One cardiologist suggested that may be normal for someone 6'3", but I have never been particularly athletic.
I am still on the atenolol and scheduled for another CT scan in 1/2016 with my new cardiologist.
Would you say my results are normal or abnormal for a healthy aorta?
~Dave
Will do, and no worries - agreed that most of these questions should be asked of my doctors. Will keep you informed.
I'm glad to hear that you've signed up for a health plan that will allow you to get expert care. I really don't know what the doctors are Stanford are going to say. I just know that you do need to see them, because you need medical advice that you feel confident in. You have not gotten that kind of medical advice in the past and have been left with a lot of mental distress, in addition to your chest pain.
As for your specific question about aneurysm pain, I just don't know the answer. On the face of it, I would not expect nitroglycerine to help with aneurysm pain, but I don't know. As for whether your pulmonary artery requires treatment, I don't know that answer to that, either. All of your issues are very, very specialized, and I'm not any kind of doctor at all. I'm just a lay person who has undergone surgery for a thoracic aortic aneurysm and bicuspid aortic valve. From that experience, though, I do know that thoracic aneurysms require expert care. It is my very best, heartfelt opinion that thoracic aneurysms need to be assessed by doctors who treat thoracic aneurysms every day.
Personally, I would want to consult a surgeon to see if my aneurysm(s) needed surgical treatment. I would go straight to the top and make an appointment with Dr. Craig Miller. Why beat around the bush? If he tells you there's no way you need surgery, then you can stop thinking about that. If he doesn't think you need surgery, then he should have an opinion about what kind of care you do need and who can help you.
Please keep us posted. Wishing you the best, always.
As for your specific question about aneurysm pain, I just don't know the answer. On the face of it, I would not expect nitroglycerine to help with aneurysm pain, but I don't know. As for whether your pulmonary artery requires treatment, I don't know that answer to that, either. All of your issues are very, very specialized, and I'm not any kind of doctor at all. I'm just a lay person who has undergone surgery for a thoracic aortic aneurysm and bicuspid aortic valve. From that experience, though, I do know that thoracic aneurysms require expert care. It is my very best, heartfelt opinion that thoracic aneurysms need to be assessed by doctors who treat thoracic aneurysms every day.
Personally, I would want to consult a surgeon to see if my aneurysm(s) needed surgical treatment. I would go straight to the top and make an appointment with Dr. Craig Miller. Why beat around the bush? If he tells you there's no way you need surgery, then you can stop thinking about that. If he doesn't think you need surgery, then he should have an opinion about what kind of care you do need and who can help you.
Please keep us posted. Wishing you the best, always.
Open Enrollment time has finally arrived, and I have signed up for a plan where I work that includes Stanford as a preferred carrier on their tier 2 payment network.
One more question, and something my previous provider seemed to be ducking. Is there any linkage between these three things: Aortic & Pulmonic aneurysms -> Chest Pain -> relieved somewhat by nitroglycerin.
I know that nitro will lower blood pressure, but if I am being caused pain by my aneurysms, would nitro mitigate that to varying degrees?
They also seemed to indicate that they don't normally do anything for a pulmonic aneurysm, though other sites have said that it can be stented if necessary.
I'm assuming the combination of the two aneurysms, mitral valve regurgitation, a trace of regurgitation from the aortic valve (at the last check), and the question of whether or not my heart is enlarged doesn't exactly paint a good picture of my overall cardiac health, does it...
A word about the heart enlargement - the first cardiologist who saw me called me the day of the CT scan she presided over (I guess that's a correct term) to tell me of it, and then when asked what was to be done, answered with one word:
"nothing"
No further checking, no information. Then, come to find out after obtaining all of the records from the provider, never noted the conversation in the log of dr to patient communications, where virtually everything else was logged and duly noted. I'm guessing that is some sort of breach of, at the very least, proper etiquette. And, they never listed the two aneurysms as part of my ongoing conditions.
I've often wondered just what my life expectancy at this point is. I'm turning 50 next year, and celebrating 20 wonderful years with my partner/spouse.
One more question, and something my previous provider seemed to be ducking. Is there any linkage between these three things: Aortic & Pulmonic aneurysms -> Chest Pain -> relieved somewhat by nitroglycerin.
I know that nitro will lower blood pressure, but if I am being caused pain by my aneurysms, would nitro mitigate that to varying degrees?
They also seemed to indicate that they don't normally do anything for a pulmonic aneurysm, though other sites have said that it can be stented if necessary.
I'm assuming the combination of the two aneurysms, mitral valve regurgitation, a trace of regurgitation from the aortic valve (at the last check), and the question of whether or not my heart is enlarged doesn't exactly paint a good picture of my overall cardiac health, does it...
A word about the heart enlargement - the first cardiologist who saw me called me the day of the CT scan she presided over (I guess that's a correct term) to tell me of it, and then when asked what was to be done, answered with one word:
"nothing"
No further checking, no information. Then, come to find out after obtaining all of the records from the provider, never noted the conversation in the log of dr to patient communications, where virtually everything else was logged and duly noted. I'm guessing that is some sort of breach of, at the very least, proper etiquette. And, they never listed the two aneurysms as part of my ongoing conditions.
I've often wondered just what my life expectancy at this point is. I'm turning 50 next year, and celebrating 20 wonderful years with my partner/spouse.
Thank goodness, Shasari. I am so glad to hear you say that. I have been very concerned. You need the opinion of a doctor who has experience in treating your particular condition. Because your problem is unusual, that means you need a true expert. I think you can get some meaningful and reliable information from the docs at Stanford. Please keep us posted.
Thank you for your reply. Quite right I should have done this a long time ago - I will be switching plans come November. Kaiser has played with my life and life expectancy for too long now as it is.
I should note that, in March when I got the MRI results my cardiologist said at that time he would continue yearly MRI's. Now however without any further exam or even seeing me in his office, he just up and changed that to every other year. I'm guessing from all my own sleuthing that every other year is not recommended, and may in fact put me at severe risk.
~Dave
~Dave
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