Now It's Bicuspid + Ehlers Danlos

[pearjas]

Hi everyone. I've been a member on this forum for years and my first post was after I was diagnosed with an aortic root aneurysm along with the diagnosis of Ehlers Danlos Syndrome (hypermobility and the aneurysm are the only 'major' symptoms presently). I've had several years worth of following up echo's, which showed a starting level of 3.9cm for my aortic root and peaking out at 4.2 in 2018, which is what it's been at since. I even had a 4.1 reading in there and my latest echo was Sept 7, which showed 4.0 amazingly. Unfortunately, before I was able to de-stress, the cardiologist threw me a curveball.

He said on the test for this year, it looked like I might have a bisuspid valve that was perhaps missed in years prior. To date, I'd had 2 CT scans (both at other facilities) and both said my heart was tricuspid. So this was a bit of a new revelation. It was described as a "slight fusion of the left and right cusp". I had a cardiac MRI yesterday which confirmed this finding. I was already told before this MRI that my heart was 'essentially functional', but I was also told if this is what it appears to be (and now is confirmed), I am at an even higher risk of surgery.. which was a bit of a blow. The cardiologist said roughly 50% need surgery and I'm reading online anywhere from unknown to 80% depending on the source. I also believe some never need any intervention.

I guess what I'm trying to figure out is what this means. The cardiologist still has to call me back after he reviews the results and I'm going to have plenty of questions.. I was just wondering if anyone had any personal input either through experience or research themselves. I almost feel like the last several years the big issue of anxiety has been the surgery itself (and possible complications, such as dementia developing afterwards if you have it at an older age, etc) but it just seems like no matter how stable I am, my odds of not having surgery are just getting worse! Just frustrated I guess... =-/

 

[pellicle]

Hi there

well that was an interesting read (if you'll forgive me) but I would suggest that its time to consider a second opinion.

I have a similar history (biologically) to you and have ended up after three surgeries (I started my career much earlier than you I suspect) and I've had in my last surgery a replacement of the valve and a dacron graft. There was some more complex non standard anatomy at the arch (of course) but in the case of my last surgery the driver was the aneurysm not the arch.

I get the feeling you've been holding a candle for never needing surgery which to me isn't the right attitude and your concerns about demntia as a possible complication are also possible with an aneuryms repair too, but then its possible you get hit by a car and killed too ... see what I mean?

You don't mention your age (which would be critical to know before I can say much more) but while you're contemplating things I suggest you contemplate a few stoic views which may help you. Remember the goal of stoicism is not to attempt to pretend you don't have feelings, it is to provide a guide to the conscious and logical part of your brain which will provide a steading hand to quell the vibrations of your inner bell that's been rung.

Yesterday I was out driving with a friend scoping a local event and mapping in preparation. I was driving trails in my 4WD (its a horse, walking and MTB event) and as we were driving along I mentioned that in the 4 years I've lived here this is the 2nd time I've been on this track. My friend (who was born here) said "don't worry, its only my third and I'm asking myself why too"

This sort of country

This sort of (family type) event

So during the times you're with the Medical people, listen and learn. Afterwards put some effort into understanding and determining a plan (this forum is good for a sounding board) and then get on with living your life and enjoying the flavor of each meal and each drink.

Smell the roses as it were because in reality you aren't in control of more than what you think and what you say and do. The rest is really not in your control, not even your body.

https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
Best Wishes

 

[pearjas]

Hi there. I remember we chatted on my prior post as well. I am going to be 39 in a month...so currently 38. I guess the whole situation presents a perfect combination of all of my biggest fears mixed into a bottle of one. Before any of this was diagnosed, I developed a fear of anesthetics after reactions after being injected on multiple occasions. Alzheimer's worked it's way into my life after watching both my grandfather as well as my father at a younger age (60's) suffer from it. My dad had a lot of major surgeries. One person chiming in about how their loved one suffered from dementia that was triggered after major surgery was enough to ignite my fears about that as well concerning possible surgery.

So it's an odd concern... As grueling as open heart surgery might sound, it's actually the prep and after that present the most anxiety for me. I keep telling myself the fears are unjust... in a way. The odds would dictate I'd survive surgery and I would not have complications long term with memory after. I also keep reminding myself of expanding technology, such as endovascular repair, who drastically reduces the "damage" done during surgery and possibly with that, some of the memory complications (which I've read mostly comes from anethesia used, but I am not 100% certain). I guess I was just wanting to vent...and possibly get some encouragement, or reminders about things (such as expanding technology) that might make all of these concerns a waste of time and energy.

I sure hope there are a lot of things I'm overlooking that might help some of the concern... but I know I'm in the waiting room for the long haul...and there's not really anything I can do about that one.

 

[pellicle]

ne person chiming in about how their loved one suffered from dementia that was triggered after major surgery was enough to ignite my fears about that as well concerning possible surgery.

here's the thing. I feel that its not, its just that it was there and everyone was turning a blind eye to it and then the break of continuity in how things are was the trigger for them to become more confused.

I know that when my mum had a fall at home and was taken to hospital she didn't know her address. They called me (in a city 100km away) and I came in. Then again later when they moved her from one ward to another it was another drop in cognitive assessment.

We often do so much on "auto pilot" we can fail to observe that the pilot isn't in the cockpit.

 

[pearjas]

True.. It could be things that went unnoticed. I guess I just wish I had a crystal ball.. I'm expecting to hear back from the doctor this week to go over the results. I'm not sure if I'll have any limitations other than heavy weight lifting of course, but this whole experience has slightly reset things. I guess the silver lining is my measurements have been the same since 2018.

 

[Chuck C]

We often do so much on "auto pilot" we can fail to observe that the pilot isn't in the cockpit.

Very well put and very much accurate in my experience.

I'm currently caring for my mom who was diagnosed with dementia a year ago. My brother and I were the closest to her and have been aware of her memory decline for over 7 years. My step father had parkinsons, passing away 3 years ago. Up until that time my brother and I, and our spouses, were the only ones aware of her memory decline. Everyone else was focused on Dad's decline and his parkinson's. Once he passed, suddenly the other siblings are telling me that they've noticed that Mom's memory has suddennly gottern really bad, an there was even speculation that it was due to her grief from losing Dad. Nope. It has been a gradual slide for at least 7 years, they just never paid close enough attention.