New, confused, scared, anxious, help

[Jingles]

Thank you all very much for your responses.
Again, I apologise for appearing hostile. It definitely was not my intention.
The frustration level has been very high my end, as I've not been getting answers anywhere.
I've felt like I was being swept under the carpet again, like I was with the AVM (took nearly 8 years for that to be diagnosed.)
That's no excuse for my behaviour though.

Before I try to get a second opinion, I first want to hear what the surgeon has to say. I finally got his name today, and did a wee bit of research. He has a very good reputation (did extensive clinical studies at the Cleveland Clinic), and specializes in complex mitral valve repair and minimally invasive transcatheter valve surgery. Reading his credentials has given me a tidge of hope!
Also, I previously asked the cardiologist for a neurosurgeon or neurologist who has seen my AVM imaging/history to be a part of the decision making about the risk level. He didn't respond to that, so I will be asking again.

@dornole - thank you so much for your suggested questions. I've got them written down ready to go, along with a few simple ones I had.
Hopefully I will come away from the meeting with more knowledge, and even better, a big slice of hope!

Thanks again.

 

[Croooser]

It sounds like you will get some additional info and a (more) definitive diagnosis after the scheduled testing and consult.

I think that dornole's list is a good one.

I would suggest that you also consider:

• Take someone with you who is familiar with your medical situation to listen to what is discussed in the consults. In my case, my wife was with me for my consults and added a LOT of value - not the least of which was helping me remember what was said. She also advised me on her opinion of the Doctors and whether or not they seemed concerned and capable.
• Unless the providers have an online portal with easy access to all records of your tests and consults, be sure to request a hard copy of any test results. If there are digital images, get copies of them as well. Also, hard copies of any visit summaries. These copies can be provided to others if you seek other opinions.
• If you are told that you are not a candidate for a Mitral Valve replacement - why - exactly why? Then take that opinion elsewhere and see if it is confirmed.
• Finally, if there is anything less than a definitive diagnosis with a specific treatment/surgery plan that has a good chance of resolving the issue, be prepared with a Plan B. Where else can you go to get a second opinion?

My wife just went through 5 months and 5 doctors and multiple tests and consults to get to a definitive diagnosis for a non-heart related (but serious) issue. The first 3 doctors proved to be unconcerned, and in one case, incompetent. She persisted and Doctor #4 provided a preliminary diagnosis and an immediate referral to a surgeon who confirmed the preliminary diagnosis and in about 30 days performed the rather complex surgery that was successful. My point is that, in our experience, one has to be determined to keep trying different Doctors until you are sure that you know what the situation is and what the options are.

My best wishes to you for a successful trip and a positive outcome.

 

[ValveAdmin]

Best wishes and prayers for you with the doctor's appointment.

 

[Mister_James]

Let me stick up for doctors a little. They may not be on their best foot everyday but in most cases they are mostly good folks. What is important is advocating for yourself and getting regular health screenings.
When you show up at a hospital in distress, they have to start an informed guess work to get a clear picture of what is it and what caused it and that may take multiple visits and procedures and consultations.
That said, a very simple understanding what the doctors are saying about the condition and how are they are going to manage the situation (and that's where you get a second opinion).
What good is a second opinion if you do not have an initial opinion?

 

[JaneF]

She "might" be able to get an opinion from the likes of the Cleveland Clinic, but that would definitely fall outside the normal practices of the Canadian health care system, and there would not likely be any funding. There would absolutely not be funding for surgery in the US unless it could be demonstrated that the care needed simply can't be provided in Canada. Options in specialty centers in other provinces would be explored if needed, but Vancouver and UBC are major centers, so odds are consults will be kept local. Just FYI for those providing advice based on experience in the US

Obviously being in the US I have no experience with the Canadian health care system, but I will share what I learned from the Cleveland Clinic.

My insurance company, Anthem BCBS, had sent me 3-4 letters over the course of the past year offering a clinical review from the Cleveland Clinic. After the last letter I decided I had nothing to lose, as there was no charge, so why not do it. After about 10 days a Cardio PA called to discuss their findings.

They asked how often I have an Echo, which my current cardio has never mentioned a set schedule. She said after my last one in May 2021 showed my MVR was fine, however I had a trace of Pulmonary regurgitation and mild Tricuspid regurgitation, they would recommend an annual Echo. I found this very interesting since my current cardio had never mentioned these other issues and I plan to ask about it at my appointment in November. I’m not concerned since it’s mild & a trace, but curious as to why he never mentioned it.

All that being said, I don’t think it would hurt to reach out to ask for a clinical review and at what cost.

 

[thomas999]

Let me stick up for doctors a little. They may not be on their best foot everyday but in most cases they are mostly good folks.

I agree and disagree with your comment, because I found some very good doctors that have made me feel great with their bedside Manner and their knowledge. Just the same, I have found terrible doctors that will never be good doctors, period. These type of doctors are usually found in hmos or some government instituted Healthcare systems. The government will never provide the best for their citizens, because there are just too many citizens to be concerned with. Anything the government gets a hold of they mess up generally. As far as canada, I think they have a national Healthcare System. That's why so many come over here for care is because too many of the doctors are just playing lousy. Doctors that can't make it in a private practice generally join group organizations like National Health Care or hmos, those type. I have run into both levels of doctors in my time, some that should be cast out of their profession, and some of the greatest most caring doctors as well.

 

[Jingles]

This is a very, very late reply. One that I put off because I didn't like what I was told from those men with degrees.
I found out I have mixed mitral valve disease - both severe regurgitation and severe stenosis.
Because of the AVM, my only option is TMVR.
But I've been deemed too much of a risk factor even for that. Which I do understand.

Not posting this to be a downer.
On the contrary, I am living every day to its fullest.
Like everybody should.
But don't.
Cos they think there's always tomorrow.

I hope for many, many more tomorrows for you all!
Cheers!

 

[pellicle]

Mistake understanding

 

[Jingles]

Sorry, but are you deliberately being a dick???
Maybe I've misinterpreted what you said, but TMVR is NOT an option.
Thanks anyways for your best wishes.
But that was not helpful in any form.
I think I best stay away from here.
I wish you all well.

 

[pellicle]

I'm sorry I misunderstood this

Because of the AVM, my only option is TMVR.

But I've been deemed too much of a risk factor even for that. Which I do understand.

And thought it referred to standard surgery.

My sincere apologies

 

[Jingles]

I'm sorry I misunderstood this


And thought it referred to standard surgery.

My sincere apologies

Now you're making me look like a dick after you edited your reply!
(That was not meant as an insult.)

Thank you for your apology. Accepted.

 

[pellicle]

Thank you for your apology. Accepted.

I edited it because it was wrong and based on my mistake.

Again, I'm sorry for any distress

 

[Superman]

Doctors that can't make it in a private practice generally join group organizations like National Health Care or hmos, those type.

That’s awful presumptive. How about Dr’s that just want to provide the best care for patients without having to worry about running a business and chasing down patients and generating revenue typically end up in places where they are paid a decent salary to do what they do best? So they get out of a sales / business management job and just care for people. Whereas in private practice they’re more concerned with keeping their business afloat and generating revenue per patient.

I’m not saying either assumption is true. But anyone can assign motives to anyone else. Wanting to work for a salary doesn’t make one lazy. It just means they want to do what they’re trained to do and not spend their time on business management and sales / marketing and HR.

 

[Croooser]

Jingles,

Not the best diagnosis for sure. A thought:

It still might be worth a shot to contact some of the world class heart clinics. Although my valve and aneurysm was "standard issue" and I was a candidate for a typical AVR/aneurysm surgery, I became aware of the fact that the Cleveland Clinic in Cleveland is well known for handling complex situations that other clinics deem to be inoperable. That does not mean that they would be able to provide a solution to you, but it might be worth an inquiry. I believe that if you forwarded your records to them (or another world class clinic), that they would let you know if they think it worthwhile to go there for tests and a consult. It did not cost me anything to do so prior to my surgery. Undoubtedly, there are other clinics that have similar capabilities.

Not trying to raise any false hopes - just an idea.

Best wishes to you.

 

[Nocturne]

Sorry, but are you deliberately being a dick???
Maybe I've misinterpreted what you said, but TMVR is NOT an option.
Thanks anyways for your best wishes.
But that was not helpful in any form.
I think I best stay away from here.
I wish you all well.

Pellicle can be a fountain of toxic positivity. Try not to let him get to you.
Your anger, sadness, and fear are valid.
Good luck to you. I’m sorry you’re dealing with this.

 

[uncle_boko]

I would always recommend the Cleveland, I just had mitral and tricuspid repair at the Cleveland in London UK. If there was a word meaning in excess of excellence, I would use it!!

 

[pellicle]

Pellicle can be a fountain of toxic positivity.

Hey noctrune, welcome back.

How's your Lp(a) doing? I have read and heard some positive things about options for actually dealing with that.

Have you had valve surgery yet? You'll be pleased to know I decided to go of antibiotics near the end of last year. So after 10 years lets see if I am cured of that bacteria or I go in for another round of tough love.

I hope you continue to post in your happy bouyant and positive ways or yore.

Best Wishes

PS have you read of these things? (I expect you're well aware by now)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8822604/
Among patients with coronary heart disease receiving moderate to intensive statin therapy (eg, simvastatin 40–80 mg/d or atorvastatin 80 mg/d), approximately 50% to 60% achieve LDL-C levels <70 mg/dL (2,5). Of these, approximately 30% have LDL-C levels of 60 to 70 mg/dL (5). Whether patients with LDL-C levels close to 70 mg/dL on statin treatment derive incremental benefit from further lipid-lowering therapy is therefore a question that is frequently encountered in clinical practice.

Inhibitors of proprotein convertase subtilisin/kexin type 9 (PCSK9) produce large reductions of LDL-C as monotherapy or when added to statins. An additional effect of PCSK9 inhibitors is to reduce lipoprotein(a) concentration by 20% to 25% (3,4). Lipoprotein(a) is a type of low-density lipoprotein particle whose concentration is determined primarily genetically. It is believed to have atherogenic, proinflammatory, and prothrombotic properties (6). Epidemiologic and genetic studies associate lipoprotein(a) concentration with the risk for incident coronary, peripheral artery, and cerebrovascular disease (7–9).

 

[dornole]

Well crap, jingles. If I recall you were already seeing some quite qualified docs. Are you pretty confident there’s no surgical answer? And if so, do you trust your team can manage your symptoms as best as possible without surgery?

 

[Chuck C]

I'm really sorry to hear about this Jingles.

I would second what Croooser and Unkle_Boko said, and recommend getting a second opinion from a top clinic, maybe a couple top clinics. There are clinics and surgeons which pride themselves in taking challenging surgeries that others will not. Whatever the risks of the surgery, it is unlikely to be higher than not doing surgery, as the outcome there is certain.

Hugs and best of luck.

 

[pellicle]

Whatever the risks of the surgery, it is unlikely to be higher than not doing sugery, as the outcome there is certain.

that's what I was thinking, but then I don't know all the facts