As background, My condition is untreatable and surgery won’t help (labelled recurrent chest pain syndrome with confirmed myocardial bridge of the LAD with confirmed diastolic compression). This albeit won’t be officially said (as there is no established diagnostic protocol) is a restriction of blood flow. My prognosis is not known and I fall off the edge of the “research” cliff in that it usually ends saying medical treatment and surgery if meds not working. Whilst research also says bridges are benign, I am the exception / living proof.
As of last week my current cardiologist has put me on “patient initiated” basis - basically go away and if you have any problems / issues you’ve got my number.
is that even a real thing or made up on the spot? Still I appreciate it though, I’ve got nothing else!
So this is it, I carry on living with my persistent angina which on a good day is a pain level 3/4, and on most days routinely 5/6 increasing to 7/8 dependent on what i do sometimes very simple daily stuff that “normal people” do will bring on an intense attack. This is every day, every time I move and do something. Then there are the emotional triggers. And the flutters but as not many, cardiologist not concerned.
Cardiologist advised keep your heart calm and no over exertion. I said “does that including walking up one flight of stairs”? 😂 they didn’t answer.
Whilst I accept my reality (because otherwise my mental health will be permanently poor), my concern and the point of this post is if I repeatedly get angina which is caused by restriction of blood flow and therefore blood oxygen to the heart, this will logically affect the structure / function of my heart- eventually? (In 2022 same cardiologist wrote I had mild LVH)
but no one i.e. the NHS is going to check or monitor, my fear (whether rational I don’t know) is the damage will be done and it’ll be too late to prevent / reduce.
So I’m toying with the idea of a private echo once a year to give my heart a good look over to at least give me peace of mind? Something I lack when it comes to my condition. I’m sure lots of us struggle with the “unknown” when comes to health issues.
I’m on amlodipine, atorvastatin (these I was already on re high BP and cholesterol before condition becoming symptomatic) clopidogrel and lansoprazole.
If anyone can relate I’d appreciate hearing from you and how you tackle things if no one’s monitoring / checking periodically.
If your still reading, well done for the perseverance 😊
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I can't comment on your health issues, not having any experience with what you are going through but I can reassure you that a patient initiated appointment is a real thing, they use them at the hospital I am under, it is called a PIF, short for patient initiated follow up, usually given to patients that do not need any further medical intervention, unless the patient feels they need it.
Perhaps use this system and ask for more information from a different cardiologist
Hope you get some answers and more importantly get it sorted
I was simply sharing an idea. It’s clear that you have extensive experience on the topic - we’re always reminded of it so we get it ok. However, it would be encouraging if all members of this group felt their contributions were valued, regardless of their level of experience.
Yes. We definitely need to hear from as many voices as we can about less common health conditions , as we need to know the different experiences people of different ages and genders have.Like we most conditions we are all unique and it helps to hear from many friendly voices whom understand what we are going through.
Both those on the way to diagnosis and those whom have been diagnosed for some time with experience, it helps more to know we aren't alone and that the way things affect us is normal.
Have to agree with you, Ennasti. It's always good to hear different voices, lived experiences, and different opinions & ideas on this forum - and thank you for sharing yours.👍
Hi I have been checked for everything except vasospastic angina but I do not fit that profile as described / lived by Milkfairy who has been specifically tested for it. My myocardial bridge has been tested which is angiogram with dobutamine. This is per research the gold standard / definitive test.
I hope you get to the root of your problems. Ive never heard of this patient initiates concept. Still, if it works and gives more peace of mind it’s all good I guess. It might be suited to some and not others.
Hi I have got to the root of my problems I’ve been appropriately tested by the known expert through angiogram with dobutamine it’s just early days for research etc. There is nothing else at this present time.
Apparently it’s a real thing patient initiation and I see the logic of it from a resource constrained NHS.
Milkfairy has given me an idea or two of what I could ask for to keep a check on my heart function, emailing my cardiologist today!
Thank you for thinking of me. I believe the OP is aware of vasospastic angina and microvascular angina already as they closely follow Milkfairy.
My experience with how my bridge affects me is slightly different to the OP, therefore, not all the symptoms between myself and the OP are the same. I believe our diagnoses and treatment are also different too (apart from having the bridge).
Yes both my treatment and diagnosis are different to yourself but also is my bridge having been tested and confirmed. No two bridges are the same that’s the complexity of this condition and its treatment - differences in lengths, depths and positions and artery(s) affected all play a part as well as level of proximal stenosis if there is any.
I think from memory some of the meds you take have definitely made my symptoms worse in the past.
I also think my symptoms are significantly different to yours.
Yes, that’s right. The characteristic’s of a bridge can determine the type of symptoms we have and treatment needed. Despite not having the testing, a confirmed spasm in my bridge which led to a confirmed heart attack has been considered as the appropriate evidence. Some do not always have a clear clinical picture and further testing is required. In my case, where the evidence is predominantly in favour of vasospasms, as my specialist put it “this is a clear cut case of coronary artery spasms” testing will not be needed, but available should I ever need it.
It is a complex condition.
I also react badly to the stress agent used for the specialised testing involved in bridges. Whether they do/would offer a different type of stress agent I don’t know. It will be one topic of discussion with a specialist next week.
A treatment(s) which is appropriate for myself, has not been suitable to you in the past as you have recalled yourself.
Yes, your symptoms differ to myself. I hope you can get the support you need from your patient initiated care should you need it.
Being able to ask for an appointment when you need it sounds positive, it gives you some control.
I am in a different situation appointment wise as I see my Cardiologist every 4 months and he comes to see me on the ward when I am admitted.
I do, share your experience of living with a type of refractory angina that nobody really knows how to treat or what my long term prognosis is.
My GP is pretty good. I go to see him, arrange several blood forms in advance of my unstable angina periods. I then have my troponin and NTproBNP blood levels checked.
NTproBNP is used to monitor your heart function, it rises when your heart is under strain. If it's raised then an echocardiogram can then assess how well your heart muscle is working.
It might be worth checking with your GP or Cardiologist if you can have this blood test to monitor your heart function.
Cardiac rehab for us is a challenge!
What do we do to exercise our heart muscle without triggering our angina?
Over the years I have learned that I must keep my heartrate at a certain level.
I find Tai Chi and yoga a way of keeping calm as you have to learn to coordinate the breathing with your movements.
The psychological impact of living with unpredictable pain and other symptoms is challenging.
I was referred to a Clinical Psychologist and a Pain Management Programme which I found helpful.
Living in pain can be isolating other people can't understand or see our pain.
Perhaps see if your GP will refer you to a Pain Management Programme.
One book I can recommend is this one by Vidyamala Burch
I’ll look into the blood test you mentioned, something just as a regular check would be helpful.
I find doing things where raising my arms can tire me out, get dizzy / headache - I tried some stretches standing and was quickly tired/dizzy/ headache so it put me off. But I think there is a degree of de-conditioning going on due to lack of exercise. But then answer is I need to keep trying little at a time. Giving up is so easy when in pain, I need to give calming activities more of a chance though.
I did ask my gp about pain management but he said you’re not on pain killers so it’s not for you 😳 I’ll look out for the book!
There's more to pain management than pain relief medication 🤦♀️
I use a transcutaneous electrical nerve stimulation TENS machine.
I used a TENS machine in labour when having my 3 children.
I checked with my Cardiologist and Physiotherapist and they said it was fine for me to use.
It really helps me. I have to take it off when I go into hospital as it interfers with the ECG machines and the continiuos cardiac monitoring I have to be on.
Two more useful things I can add to my email to cardiologist to enquire about - TENs and pain management support! My brain goes blank in appointments and the cardiologist was rushing. Thanks 👍
It's a shame that those of us living with rarer and challenging refractory angina have to face such obstacles, prejudices if not unkindness before we can access the care we are entitled to.
Seems like you’re a walking medical miracle getting so much attention from GP/Cardiologist/Hospital when most of us find getting appointments with either is a miracle on its own 😃
Yes it can be hard but I also think from various posts I’ve read that the “attention” in that particular case was hard fought for over many years. Think that’s why I would like to get some ongoing “attention” in place. 👍
I know exactly how you feel, am in somewhat familiar situation, I am aged 68, I have a broken skull from 2018, double seizure, not actually diagnosed until July 2021 "the next seizure you have will probably be your last!" had epilepsy since 1970, over 400+ seizures, but I'm still here. Recently misdiagnosed with Prostate Cancer in June 2022, [in fact I have Schwannomatosis or NF3 a very rare neurological condition] the schwannomas/benign tumours on my prostate gland led to their diagnosis, but the Testosterone injections or Decapeptyl SR led to serious reactions with my pectus carinatum [pigeon chest] my rib cage structure is now completely "untreatable" I have gone on about this before on this site, only this morning asking about my chest to my GP, too dangerous to have anything done for me, asking about removing a rib that dislocates with another, right above my heart! Yes the GP calls me a "one off" or as you say " I am the exception / living proof ".I'm the only one known in UK with Schwannomatosis, I have a personal specialist, so any of my "moaning and groaning symptoms" will be noted by her for future medical research [recognised as a medical condition in 1973, I started in 1970!] I live by myself, a sister who lives just around the corner, I finally had the courage to tell her and the rest of the family know of my "real state of health" two weeks ago! Ironically my heart is my best organ, without it? I had a full check last year, 👌 I had my GP [a good friend👍] do a PSA test on me, passed with flying colours, he like myself are doubtful if I ever had Prostate Cancer in the first place, bit late for my "buggered " or terminal chest ? I get continual blood tests as a new GP said recently "They like take blood out of you!" Give me a call pm any time, I'm not going anywhere!
You are indeed a very rare creature / exception / living proof / complex array of issues (I mean that kindly) even without any googling. Thanks for sharing your experience and situation, you have a very supportive GP and specialist arrangements in place. Whilst I can’t hope for that or need it, it has helped spur me on to at least ask for a bare minimum as I didn’t at my appointment last week, was a bit despondent / brow beaten after. ❤️
Unusually I find my tattoo left arm "Adapt through adversity" and right arm, my family motto "Patientia Vincit" [Patience endureth] do help me through some of my worse times?
Oh how I wish but GTN makes worse, and nitrates for me are the devil’s work 🤭. I’m on BP med and statin plus blood thinner - they’re a help / insurance but don’t help with the actual angina. 👍
I can't advise re your health conditions but the patient initiated appts are definitely real.
My husband is on patient initiated appts. He has had regular yearly/6 monthly appts with his cardiologist since 2012, however he'll no longer have regular appts now as there's no point but, if he needs to see a cardiologist then he just has to phone the hospital and they'll make an immediate appt for him, no referral from the GP is required.
I hope that puts your mind at rest to some extent, someone has suggested getting a 2nd opinion about your medical condition which seems a good idea.
Thank you yes helps, I had really thought it was made up to send me on my way but I was feeling despondent at the appointment!
I have secretary number and email so I can get back to that cardiologist.
I’d always advocate getting a second opinion, only I’ve seen the one expert cardiologist. I’m content with their opinion / diagnosis. But see what future brings.
Yes we felt that way as well, my husband has severe heart failure and theres no magic tricks left in the box to treat him so it does seem a waste of the cardiologist time (& ours) to go to these appts. However, on thinking about it, it's very reassuring that, should he need to, he has immediate access to cardiology if necessary. He's also very well looked after by HF nurses &, though our GP surgery isn't great by any means! If he needs to see a medic then he always gets a same day appt. I hope things improve for you
I have a myocardial bridge that was found in Sept 2021 after an NSTEMI .
And been having symptoms as you describe ever since , nhs say it’s not causing my problems.
My diagnosis is coronary artery disease , acute coronary disease, angina, palpitations. Nothing about myocardial bridge.
When I mention or they read notes in A&E about myocardial bridge everything seems to change as they no not much can be done I reckon.
Been in A&E 8 times in 12months and ecg and bloods fine every time except last time a 1st block came up on an ecg but apparently this is normal.
I have patient initiated appointment which I used last time by ringing cardiology and an appointment set up straight away with no referral from GP.
I have just completed a stress test even though I had chest pains doing this test was normal. Awaiting letter to confirm this from Cardiologist.
I have not even though asking any practical advice on what I can do ie work etc only back in 2021 in cardiac rehabilitation was just listen to your body but with employer this is a minefield and awkward.
There you are, my MB soul mate ❤️ I totally relate to your experiences - they just either won’t consider the bridge at all or they don’t know. The lack of acknowledgment enough just to consider it could be the issue was a low point. It is normal for ecgs and bloods to look normal and a paramedic insisted I go A&E because of something on ecg but again all normal when at hospital.
I had stress echo (on treadmill) and stress MRI to exclude microvascular issues rather than prove whether bridge, kind of process of elimination of all else that could be wrong. Angiogram with dobutamine is key test if you can get it.
Even though they can’t do anything for me, having the dobutamine test was sort of the acknowledgment I needed.
The practical advise I got is basically keep heart rate low and don’t do anything strenuous.
Good luck with your test results and hope you have a better outcome regards treatment.
I too am on Patient Initiated Support - although my cardiologist calls it Patient-Led Support. Thankfully, I've not had to see him since late last year. Other than two angiograms I've not had any physical intervention and am being treated by meds. According to my last angiogram one of my (minor) arteries is now full blocked and that's good apparently as it only supplies a small proportion of blood and the heart will create it's own bypasses. Not had any angina-type pain since that happened and my last assessment at the Cardiac Centre as part of my phase 4 rehab (a couple of weeks ago) was all good. Interestingly another partially blocked artery has cleared.
I never knew there was a name for a cardiologist saying ' you know where we are if you need us' but yes I can relate to that. I have Microvascular Angina, Bradycardia and Long QT Syndrome and currently self manage my conditions by listening to my body and accepting my conditions. That was made easier after watching a cardiologist on YouTube who explains heart conditions better than any cardiologist I have been to see.
Yes it seems self monitoring and management with access to call up a cardiologist if required is the common approach. I’m still working all this heart stuff out including how to live daily life / what my limitations are (I just keep pushing it too far or it just surprises me) - acceptance is “work in progress” !
I don't want to give you or anyone else false hope here, but about 15 minutes ago, my wife called me out to the back kitchen where the small TV was on to view a BBC news article about heart treatment in Austria I think. It's a new treatment that stimulated the growth of new vessels in the heart, by an intervention using mechanical shockwaves, basically sound waves directly to the heart. This involved opening the patient up via sterniotomy, so it's not done lightly, but the results look very promising. They showed one patient who claimed that he was now able to go hiking in the mountains without pain or breathlessness. They said they would offer the treatment to other countries in a year or two, but knowing the glacial pace that our NHS moves at, I think you would be lucky to see it in 10 years over here. I had a look for the article on the BBC news website but I couldn't find it so I can't provide a link.
Thank you I will search for it. It would be amazing if new vessels could grow or at least compensate. But your right whether this comes to UK so. or more research is done on myocardial bridges, I don’t expect progress anytime soon. 👍
"The aim of this trial is to investigate the safety of cardiac shockwave therapy (SWT) as a novel treatment option and its efficacy in increasing cardiac function by inducing angiogenesis and regeneration in hibernating myocardium."
It seems to be a technique to help new blood vessels grow, known as angiogenesis with the aim to regenerate damaged heart muscle.
I'm on the same thing for cardiology and with my pain consultant for damage to my spinal cord. I've been waiting since last October to see cardio and when I rang the pain clinic there was a 3 months wait to even speak to him.
That’s not great at all. I wonder how they prioritise / triage once people like us put in a request for help? I do hope you get some progress soon. ❤️ I’m not expecting fast responses based on previous occasions getting in touch with a cardiologist.
Wellthe pain clinic said it would be July sometime. NO word at all from cardio except the booking centre said they are just now doing referrals from last JUne.
That’s a big backlog, will the cardiologist’s secretary help in any way as I know in my case in the past they’ve directly booked an appointment? Its certainly got its flaws this patient initiated follow-up thing.
Wouldn’t it just be better they prioritise than we deteriorate and rock up at their door with bigger (more costly) problems. That’s my underlying fear whether rational or not I don’t know.
maybe the pain clinic might escalate you seeing a cardiologist?
It's a neuro surgeon I need from the pain clinic. My GP has tried cardio for me in January- got the same response. The only one I've known to work well here has been the emergency dentist- the very next day. He left a root in because it meant removing a bit of my jawbone and told me to ringback if I got pain.
I did wait a year for a respiratory consultant then they booked tests quite quickly, but yours is very specialist, all comes down to money and regional differences should not be like that.
That’s making my jaw hurt thinking about it.
I do hope there is progress soon, fingers crossed for July.
Thanks. Mine's breathlessness getting worse for cardio. After my HA they saw two 65% blockages in the LAD not stented so G P and I are wondering if they've got worse. Lung function test was off the scale good. My spine is a different matter; a section of spine has slipped out of line and now affecting spinal cord, legs, bladder. BTW- tooth was easy apart from roots crossed over so he cut the gum and got it out that way.
And the one causes problems with the other. I'm even having huge problems getting my cataracts done. I can't lie flat because of my spine so they want to do a general anaesthetic and not keen because of heart but even under general they would lie me flat which would possibly damage spine further. Can't win. GP is only concerned about the pain.
Several things working against each other, I imagine it’s hard to pick what needs sorting first so the others can be fixed, I hope you get the support you so obviously need so these complex and conflicting issues can be resolved. ❤️
thank you everyone who has shared their experiences and understanding, and explaining PIF is a real thing! Plus the practical things I could do, email sent to cardiologist so I guess I have started my first patient initiated event! I’ve asked for the NTproBNP blood test and pain management support. Recommended reading next.
It has been a real help, I often feel despair, but I feel like I’m doing something to help myself. Can only ask!
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