Dealing with a Sam and adrenal surges

[Healthy64]

Can anyone advise I've been told I have a Sam a Systolic Anterior Motion of the Mitral valve a displacement of the distal portion of the anterior mitral valve towards the LLVOT left ventricular outflow trunk during Systole . Doesn't sound good as I get adrenal surges causing v high BP 270/80/145/150 and heart rates 280 ish atrial flutter .thank goodness fast regular and not irregular several non-stemi incidents later exasperated by medics who tell me no cardiac solution can only attempt to stabilise as looks like secreting tumours causing surges. Would welcome any cardiac advice as I think bisoprolol at 2.5 x 2 daily actually provokes situation maxed out on perindopril and Lercandipine now on alpha blocker as well bisoprolol now at 1.25 x2 daily less incidents but carcinoid syndrome evident daily issues

Any ideas welcome

[Kristin1812 Heart Star]

Your post is complicated and technical, to me, Why not ring the BHF helpline? They are well qualified and very helpful. Heart Helpline team is on 0300 330 3311 Mon-Fri 9-5pm or email [e-mail]

[Healthy64 in reply to Kristin1812]

Hi Kristin thanks for the advice as it looks like heart damage is caused by adrenal tumours in waiting on a MIBG scan and results of heart and adrenal area MRI scan . So your right I need some specialist nursing input to explain some things Thanks ever so much for your support appreciated

[Kristin1812 Heart Star in reply to Healthy64]

I hope they help to unravel things for you. Let us know how you get on.

[Youreasunflower]

Hi did you ever get an outcome and find out if you had carcinoid?

[Healthy65 in reply to Youreasunflower]

Well after not 10 but over 20 years got to an answer Just after Xmas had multiple admissions to 2 different hospitals and I was pushing the cardiologist s to look to what could be impacting the heart and Blood pressure

Full body Pet scan ,CT scans of heart and abdomen along do with MR Is got a result yes I have bi - Lateral nodules on adrenals but the condition is a pseudo Pheocrromacyctoma a rare situation

It's causing the imbalance release of norepinephrine/ noradrenaline . That mimics the true Phe o and is just as deadly . The carcinoid syndrome effect and all

It took a specialist hours looking at my biochemical results and the symptoms tests followed by a 21/2 hr interview tie it down.

Now looking at ablation plus pacemaker as heart is damaged remodelling effect

I discovered th at the effect of these circulating enzymes etc can be to alter the conductivity of the atrium this the sinus node will fail and alternative pathways will take effect .That's where I'm at waiting a few weeks to hopefully survive the EP cardiologist ablation , pacemaker insertion and hopefully avoid a surge that takes me

It's a scary situation but no choice really so will go with it a and a M DT a team to keep me alive throughout procedure . Last 6 weeks I felt res us and CCU was like my second home but I am a survivor

Wanted to post this so that others can know when you think your right about your body and have a reasonable grasp of what's happening concentrate on pushing the underlying cause with doctors don't settle for the condition outcome .if I hadn't insisted I would not be posting this .

Hope things improve for all the folk here on this site reading your stories and experience s have inspired me to get to a solution that may work and may restore a semblance of a more n normal life

I'm grateful to you all

Regards

Healthy 64