I'm at maximum anxiety levels! Crazy bad experience with cardiologist

[KarenK]

I’ve had 3 appointments with my new cardiologist. He showed up for the 1st and was quite charming. 2nd I met with a surgeon. Cardiologist showed up at the very end and contributed nothing.

3rd, after waiting 1 ½ hrs. a different surgeon met with me. He announced that they were going to do a TAVR. (Surprise! I didn’t know we were at the point. 7 wks. ago they said it wasn’t nearly as bad as originally reported and it’s possible I wouldn’t need surgery for another 5 years!) I was handed a brochure from the valve mfr. and ask if I had any questions. Being surprised I couldn’t recall my list of questions, but I managed to ask a couple. The dr. just stared at me, never answered, then left. The nurse told me to wait, why I didn’t know. Then a full 2 hrs. late for the apptmt. the cardiologist walks in and says “who are you?” He plops down at the computer, spend a good amount of time there and ignores me. I asked a question but he wasn’t listening and gave a completely inappropriate answer.

Skimming the brochure, I happened to see where it said the valve cannot be used with someone that cannot take blood thinners. That’s me! I reminded him that the Mayo Clinic said I couldn’t take blood thinners. He mentioned Plavix, said it’s not really a blood thinner, it effects the platelets and he actually said, “Don’t worry about it.” and brushed me off!!! Did he just appear so that he could bill the insurance?

He’s totally ignoring my brain bleed, clipped aneurysm medical history! And they haven’t even read the test results of the Neurointerventional doctor they referred to! His nurse claims they never got them, though repeatedly she said she would follow up. The neuro doc said it’s in the computer system, she could view them at any time!

I’ll be going to the Mayo Clinic but I can’t even trust them to use as a local source. There is one more medical system in NW Arkansas that I can try, or I will need to go 2.5 hrs. to Missouri or Oklahoma for a local source. Is that feasible?

It would be so great if I could do TAVR. I started looking into the possibility with my history and I found: “Bleeds were significantly higher for adults taking older blood thinning medications including Plavix”

“… the annual rate of de novo aneurysms is relatively high and the cumulative risk becomes significant after 9 years. In consideration of the fatality rate of Subarachnoid hemmorrhage, follow-up angiography is indicated for patients with clipped aneurysms 9 to 10 years after surgery.”

It was clipped 10 years ago this month.

 

[jeffp]

You have what would be referred to as a “complex medical history”. This is not something you want mess around with docs that don’t seen to give a crap. You gotta do what’s 100% best for you, and go in fully informed. Your life is worth doing a bit of travel and research for. We’ve got some great docs here but I’ve know a few folks that they recommended to the Cleveland Cardiac Clinic for some specialized procedures (don’t ask me what they were, it was years ago).
Just the anxiety is enough to give you heart trouble. Best wishes.

 

[Dodgy Ticker]

Sounds like a dreadful situation and you have my sympathies. All I can say, having been pushing my doctors to think outside of the box for a long time is that if you are even 1% not satisfied - go somewhere else! Its YOUR life they are meant to be dealing with, and if they ain't up to the job, however inconvenient it MIGHT be, it is certainly not sufficiently inconvenient for you to take risks on their behalf. What my own complex and messy medical history has taught me is that my own mental health and wellbeing are just as important to my recovery as my physical wellbeing. Wish it weren't so, but the alternatives are too serious to ignore. Good luck and keep us informed please.

 

[Chuck C]

I would agree with Jeff. Your situation is complex and it does not sound like your local clinic cares. I would suggest that you be willing to travel to one of the top clinics that does high volume and has seen it all. Cleveland Clinic has been mentioned. That would be one to consider. I could make some suggestions if you were out west, but hopefully other members can chime in and give you some input on other options within a few hours of you.

 

[Protimenow]

I agree with the others. It sounds like they don't care about your time or what waiting endlessly for one more doctor whose apparent only purpose was to create another reason to bill your insurance.

Going to Cleveland Clinic or other facilities with a tremendous amount of experience is a good idea, but I suggest that you try to find a cardiologist in your area with the right experience and understanding of your condition to provide competent care. A cardiologist like this will probably be able to refer you to a GOOD surgeon who won't be fitting your heart procedure -- whatever is REALLY appropriate -- between two hernia repairs.

 

[Croooser]

I traveled over 1000 miles to the Cleveland Clinic in Cleveland for my surgery to get the very best treatment I could find even though there are plenty of open heart surgeons in Florida. There is almost nothing that they have not experienced and dealt with at CC.

If you go on their website, there are instructions on how to assemble a copy of your medical records and forward them to the clinic for review. In my case, after reviewing digital copies of my echos and CT scans as well as hard copy of consults, they got back to me with an opinion that I needed surgery and how they would propose to do it.

They have an excellent program for out of town patients that permitted me and my wife to travel there, have them perform all of the tests again to validate the results, and then perform the surgery - all in one trip of 10 days. Alternatively, you can schedule a visit for a complete regimen of tests and consults only.

I would guess that the other top clinics in the country have similar programs.

Inconvenient - YES. But, we are talking a life saving and extending surgery here. If I had to make that decision again, I would do it the same way.

 

[Mister_James]

It does not matter where you have your surgery. Most doctors are competent enough if they work for a good hospital.

You need a good cardiologist. That's your point person who should know your history, recommend a surgeon, hospital and will do follow up care.

Your Primary Care doctor and your cardiologist are the more important part of this equation. Your surgeon will not spend an hour with you in your lifetime (while you are awake).

 

[Gkeraney]

If I understand you correctly they said you didn't need a procedure for as much as 5 more years? If that so, I would personally move slow and get at least one more opinion. Tavr durability is unknown though it seems like the leading docs are growing more confident a tavi/tavr will be as durable as a bio valve. Texas has great heart centers, and its close if you are in Arkansas.

 

[Gkeraney]

I’ve had 3 appointments with my new cardiologist. He showed up for the 1st and was quite charming. 2nd I met with a surgeon. Cardiologist showed up at the very end and contributed nothing.

3rd, after waiting 1 ½ hrs. a different surgeon met with me. He announced that they were going to do a TAVR. (Surprise! I didn’t know we were at the point. 7 wks. ago they said it wasn’t nearly as bad as originally reported and it’s possible I wouldn’t need surgery for another 5 years!) I was handed a brochure from the valve mfr. and ask if I had any questions. Being surprised I couldn’t recall my list of questions, but I managed to ask a couple. The dr. just stared at me, never answered, then left. The nurse told me to wait, why I didn’t know. Then a full 2 hrs. late for the apptmt. the cardiologist walks in and says “who are you?” He plops down at the computer, spend a good amount of time there and ignores me. I asked a question but he wasn’t listening and gave a completely inappropriate answer.

Skimming the brochure, I happened to see where it said the valve cannot be used with someone that cannot take blood thinners. That’s me! I reminded him that the Mayo Clinic said I couldn’t take blood thinners. He mentioned Plavix, said it’s not really a blood thinner, it effects the platelets and he actually said, “Don’t worry about it.” and brushed me off!!! Did he just appear so that he could bill the insurance?

He’s totally ignoring my brain bleed, clipped aneurysm medical history! And they haven’t even read the test results of the Neurointerventional doctor they referred to! His nurse claims they never got them, though repeatedly she said she would follow up. The neuro doc said it’s in the computer system, she could view them at any time!

I’ll be going to the Mayo Clinic but I can’t even trust them to use as a local source. There is one more medical system in NW Arkansas that I can try, or I will need to go 2.5 hrs. to Missouri or Oklahoma for a local source. Is that feasible?

It would be so great if I could do TAVR. I started looking into the possibility with my history and I found: “Bleeds were significantly higher for adults taking older blood thinning medications including Plavix”

“… the annual rate of de novo aneurysms is relatively high and the cumulative risk becomes significant after 9 years. In consideration of the fatality rate of Subarachnoid hemmorrhage, follow-up angiography is indicated for patients with clipped aneurysms 9 to 10 years after surgery.”

It was clipped 10 years ago this month.

I found this on tavi. Now, I have a tavi and am on blood thinners anyway as I got clots evident on ct and mine is tavi in stented bioprosthesis. Nevertheless, this is the trend in the data on tavi durability. It may be they are as durable as bio valves we just can't know yet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10203628/

 

[pellicle]

It may be they are as durable as bio valves we just can't know yet.

I hope that it is. The technology is very promising for people having their first intervention in the later years.

A good friend of mine (my other mother) had her first stent put in at about 79, she's had two more and is 93 now. I'm sure if she'd have required OHS she wouldn't be here. Shes still active (for that age) but also not as robust as when she was 45.

Fingers Crossed mate