Does anyone have a diagnosis of aortic stenosis at the same time as pmr?

[janimaths]

I was told about 8 years ago that my heart murmur suggested a problem with my Aorta. About 18 months ago an echocardiograph showed aorta not to be functioning well. I was to be monitored in the community and had another echo in March 2019. A second was done in October 2019. Despite 5 calls to doctors secretary, a visit to my GP I cannot obtain my results after 18 weeks. Any advice would be good.

[jinasc]

Call the place who monitored you and ask. Talk to person in charge if you do not get a satisfactory answer.

Who sent you to community monitoring in the first instance, Consultant, GP etc.

Mind I would be having sharp words with the Practice Manager.

[janimaths in reply to jinasc]

6 calls to monitor - consultant cardiologist’s - secretary. . Resulting in message “ it is being worked on” 2 visits to GP, several calls to GP practise. No result. Hospital is the agency who has not produced my results. Daughter here visiting. She agreed with your advice by saying I need to instigate a complaint through the practise manager and it needs to be in writing and signed, leaving a paper trail instead of phoning. So I did just that today. PMR complicates the issue. Symptoms of aorta and PMR the same - exhaustion,, weakness, unable to go for a walk or to my mild aqua fit. Thanks for your reply. It got me going.

[Blearyeyed in reply to janimaths]

Is your daughter still visiting ?

Perhaps she can take over the mission of ringing through the Day to get some answers.

It would need to be to the Cardiologist if they organised it.

I usually give them a time limit.

If they say they are going to need to check and ring back , I ask when and tell them it's so I know when to ring back if I haven't heard anything. They know I will be back on the phone that day so know they can't put it off anymore.

If I don't get answers , I ask if it's possible that " somebody else" may have mislaid my results and do they think , as it has been a while , that I should come back and repeat the test. Sometimes volunteering to repeat it gets results quicker than waiting for them to deal with a mistake.

The secretary's comment gives me the impression that they have either lost the results in the system and forgot to chase up your request , or the results are back now they've chased them up and they are trying to sort out the diagnosis .

[jinasc in reply to janimaths]

As the hold-up or 'c-up' looks to be at the hospital.. Your daughter is ideal to get hold PALS.

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. You can find officers from PALS in your local hospital.

You are not well enough to do it yourself.

PS: I had a similar problem last November, Practice Manager sorted it out.....backlog of typing letters at hospital.

[Marijo1951 in reply to jinasc]

I also think you need to contact PALS at the hospital. They really got things moving for a friend of mine who was being given the runaround by one particular hospital department.

NHS link: nhs.uk/common-health-questi...

[Brantuk]

Hi Jani, can you clarify is it your aorta that is the problem? Or is it your aortic valve as mentioned in your home page intro? Or is it both? They usually use the echocardiogram and/or ultrasound to monitor your aortic valve murmer, but to look at the whole aorta they usually use a CT-scan (and sometimes a pet scan where inflamation like gca/pmr is also involved). In my experience the NHS is very good when monitoring chest and heart problems, but sometime these conditions can take a long time to develope, worsen, or change into something that needs urgent medical attention. Either way, you do need to know the results of their periodic testing within a reasonable time, just for your own peace of mind, and I agree with what others say about getting your daughter to help chase them up. But if you notice any unusual changes or severe pains in your chest, don't hesitate to dial 111 or 999 and mention your heart valve and aorta history, and they'll get you into A&E straight away and give you the full range of tests and scans. They will tell you the results immediately they are available, and before discharging you from A&E. Meantime, though easier said than done, try not to worry - if they haven't called you into hospital yet, it's likely not bad enough to be neccessary.

[janimaths in reply to Brantuk]

hi Brantuk, I didn’t make myself perfectly clear...its aortic stenosis...thank you for your advice which is pellucid clear to me and I feel armed with the information you took time to write. Also the others who replied telling me about PALS which I may have to use in the future, who knows. Practise Manager rang me this morning, already having spoken to the secretary in cardiology who seemingly was all sympathy for me which was good to hear. I have requested and am hoping for another appointment and repeat of the echo. No wonder I have been having sore shoulders and neck for some days. PMR in my case responds to stress. Feel a worry is being lifted thanks to you all in this utterly marvellous site. And I know how to respond should I develop symptoms, and what the symptoms might be. Great. I’ll get on with my reading and study with better attention today. Go well all of you.

[Brantuk in reply to janimaths]

I'm glad to hear the cogs are finally turning between your practise manager and the cardiology secretary. It sounds like you could finally be getting somewhere, and another appointment & echo certainly wouldn't hurt. If they do have to eventually replace your valve then the operation you'll have will be mostly similar to what I had 2yrs ago (except in my case it was half my aortic arch that got replaced, right next to the valve). So if you need any info or advice when it happens then please don't hesitate to contact me. If you're not squeamish you can even find a video of the operation on the internet.

[janimaths in reply to Brantuk]

As it is said: “ there’s no substitute for experience” and many thanks for the offer of info or advice should I need it. What a gift this site is, most GP’s just don’t have the time to talk at length with patients, poor things, they are so pressured. I love the mix of skills and experiences I find on here, and the patient way replies are formulated as you all share your knowledge. Wishing you all better health.