Tavi declined by Consultant, but medical records maybe incorrect!

[Sundodger]

I was first diagnosed with aortic stenosis in 2016, since then I’ve been on 20mg of Furosemide and one amiodarone 200mg.

The cardiologist tells me I have a strong left ventricle function.

I had an echo done, I’ve been told the valve is now more rigid and she mentions a TAVI procedure.

My other illness is parkinsonism , not Parkinson’s disease itself.

I was on heavy anti psychotic medication years ago and for over 30 years, I don’t have the tremors, swallowing problems. My walking is bad, still refuse a wheelchair, just daft pride.

Anyway, I believe my cardiologist thinks I have vascular dementia, this is not the case.

It was a strange meeting at the hospital with the cardiologist, but definitely her facts are not correct. I am frail, but I can still do a simple meal for myself, wash the dishes etc.

So I feel the actual surgeon may have this wrong information and has said no to a TAVI.

My wife was deeply upset and we need to know a lot more about this decision.

I pray the medication keeps working, otherwise I feel they have placed a Black hat on me.

Thanks for reading

[Ageingfast]

Welcome on board to this friendly forum.My first read of your post got me thinking…that’s great, you do not need TAVi. Isn’t this a good thing ?

If your valve is about to fail then yes an operation to replace the valve might be necessary.

Is your valve in fact still satisfactory ? That would be the best outcome.

I had the choice of TAVi or open heart surgery. My two consultants both veered towards OHS. I am 74 and not in the best of health. But my valve was on the point of failure or, as you put it, black hat time. I opted for OHS and it all went very well. But I would rather have been in the not necessary for either section !

My surgeon preferred OHS on the grounds that TAVi might fail and then OHS would be needed.

Do let us know how things have gone

Best wishes

Sooty

[Sundodger in reply to Ageingfast]

Hi SootyMany thanks for your reply, it’s so good to have your view on this matter.

I am hoping I can go on for a while and not need an operation. I am almost 74, and an OHS is a definite no , as the cardiologist as said a couple of times.

I want to get things clear that no way do I have vascular dementia, so hopefully I can get in touch with her secretary.

Can I ask did they offer you the the surgery when you began having symptoms?

All the best

Sundodger

[Ageingfast in reply to Sundodger]

Dear Sundoger

My medical records showed mild stenosis and I got called for an annual scan. For four years. Then moderate stenosis but still just annual check, nothing else. I rather rapidly deteriorated over a few months, by deteriorate I mean having huge fatigue, 22 hours a day. I also lost partial control of my leg muscles, whereby I fell forwards.. I had a full stroke afew years before and the stroke fatigue was the same as the heart problem.my GP did an ECG then sent me for a scan at the local hospital. The very next day, a Saturday, the consultant rang me from her home to tell me I needed treatment ASAP. I went to the Crompton hospital where I had the three prelim procedures and then the Aortic valve replacement by open heart surgery. Major op. Four months of rehab at home and then I felt wonderful.

I was offered the TAVi as an alternative, but the consultant suggested OHS would be marginally better.

So I had severe, very severe, symptoms and was told in no uncertain terms that I had just a few weeks to live, so the op was urgent. The op was observed and the students confirmed how near I was to passing on.

No mention made of vascular dementia, and from what you have written that’s just an annoying irrelevance for your case. I wonder if one medical report mentioned that you should be checked to ensure you do not have dementia.

Can I add that the OHS procedure went really well. The medical care is just exceptional. My scar is hardly visible.

I went for several years with stenosis before I was referred for action.

By all means tell me if I can help.

Best wishes

Sooty

[Raylpa in reply to Ageingfast]

Hi Blackcatsooty (-: good to hear positive outcomes. May I ask were you put on any medication following the initial findings of mild stenosis? I ask as I am at that state and interesting to read Sundodger evidently was.Kind regards

Ray

[Ageingfast in reply to Raylpa]

Dear Ray

No medication prescribed. I was already on a group of tablets to suppress a second stroke. So I really had no idea that a new valve would become an issue. I did have an annual scan.

I don’t really want to know about impending health issues, I just do whatever doctors recommend.

I only had a couple of weeks to panic over Severe stenosis. Plus I was so far gone by that stage I didn’t really know what day it was.

By far the worst part of AVR is waiting to go to hospital. Once in the hospital things were excellent.

Best wishes

Sooty