Spontaneous Artery Dissection (SCAD) Research & Self Care

https://connect.mayoclinic.org/discussion/scad-heart-disease/
Hello @bensmom1, and welcome to Mayo Connect. I posted an older post that may have some more information for you regarding SCAD. To be honest...I never heard of it before until your post. So I just learned something from you! Maybe this will re-activate the community and more folks have something to offer since it was so long ago.

Before others hopefully chime in with information or answers to your questions, how are you feeling now? You say you just spent 12 hours in the ER! Nobody wants to ever be there, and certainly not half the day.

Hi @bensmom1 ,
I know your post was from quite a while ago, but I just found it and wanted to reply to share my experience.
I'm now 51 and I had an MI due to SCAD almost 2 years ago. I completely agree - recovery has been exhausting and frustrating. On one hand, I'm grateful that I was treated by a medical team who were familiar with SCAD, diagnosed me correctly (the on-call Cardiologist who treated me in the ER guessed that I was experiencing SCAD even before the angiogram confirmed it) - I've read so many stories of women with SCAD who were misdiagnosed, or even worse, told they were fine and sent home, while having a heart attack. But, my experience was completely different to everyone else in my Cardiac Rehab support group, for instance - they all reported feeling "so much better" after their stents were placed (100% of my support group, except me, had at least one stent placed). By contrast, I felt just horrible after my MI - I had a slew of symptoms, some of which were due to the new medications I was put on. And, I felt abandoned by the medical team - I was sent home the same day as my diagnosis, and it was radio silence until I contacted them. I lived in a state of anxiety that did nothing to help my recovery for many months.
Starting about 2 weeks after my MI, I had daily chest pain that was on a sliding scale of severity. I went to the ER after the first bout - like you, it was a frustrating and frightening experience. The ER docs knew nothing about SCAD - one of them took it upon himself to interpret my angiogram results for himself and told me a bunch of things that were frightening and proved to be completely incorrect (confirmed by my Cardiologist). In addition, the ER team decided to give me morphine for my chest pain (which I did not need and told them I didn't want - they insisted. I was exhausted from it for a week), and extended release nitroglycerin (nitro is contraindicated for SCAD) which gave me the worst, days long migraine (nitro should also not be given to migraine sufferers). The one good thing that came out of that visit was that they confirmed I was not having another heart attack, which was my biggest fear. After that horrible experience, I started to chart my chest pain and other symptoms in a journal - I pretty quickly figured out what felt "normal" (new normal anyway), and that none of it felt like what I'd experienced the night of my MI. I haven't been back to the ER since.
I did have a follow up Echo about 2 months after my MI - it confirmed that my dissection was healing well and that my heart function was basically back to normal. This was very comforting. Cardiac Rehab was also comforting - both because I was able to get through it (although it was very difficult for me, due to a number of factors in addition to my MI), and because I got some perspective on my symptoms and abilities by talking with others in my class. However, the single biggest positive factor in my recovery was finding a Naturopath and Acupuncturist to work with - unlike my conventional medical team, this doctor listened to me and is helping me to deal with my symptoms and my overall health. I now feel that I have a partner in my recovery process. And, for the last year or so I have chest pain very rarely, usually only when I'm very tired and/or have "over done it" on a particular day (not sure if this is due to the new treatments or just time passing). I know seeing a Naturopath and/or having acupuncture is not possible or desirable for everyone - for me, it has proved to be a huge gift, and I'm fortunate that it is covered by my insurance.
I wanted to mention one other thing, which is that I've been diagnosed with Hypermobility Spectrum Disorder - my Naturopath suspects that this contributed to my dissection. It is a fairly new and often misunderstood and under diagnosed disorder (much like SCAD) - like many "spectrum" disorders it can be quite different from person to person in terms of symptoms, but is basically a connective tissue disorder. And, I finally had an answer for the myriad of odd and debilitating symptoms I've been dealing with since shortly before my MI (when, we believe, I went into "crisis" due to severe life stress). Again, I know not everyone who has SCAD has Hypermobility Spectrum, but if you have any of the main markers (hyper flexibility in joints/limbs/digits, chronic joint pain and dysfunction or injury, many others) it might be worth having an evaluation. I immediately knew I might have it when I saw an illustration of "typical" hypermobile knees, which look just like my weird, hyper-extended appearing knees. Its also solved a family medical mystery for me as well, as Hypermobility (again like SCAD) seems to be highly inheritable, especially along the female line - my mother and grandmother's unexplained lifelong medical issues finally made sense.
Sorry for the very long post. I guess I was really wanting to share my experience! Thanks for letting me do that. And good luck to you and all those out there dealing with SCAD and Hypermobility. There is help out there!

Thank you, ngl, for your thoughtful message to my long-ago post! It is about 18 months later, and I am coming up on my 2-year 'Scadaversary,' as we survivors call these milestones. I have not had another SCAD but the chest pain comes and goes without fail. I can go several weeks with little to no funny feelings in my chest, and then all of a sudden, the pain comes on. My last ER trip was in August of this year. We were at our camp in the White Mountains of Maine when the pain + lightheadedness came on as I began a walk in the woods. My husband took me to Bridgeton Hospital, a small regional, and there I got the best and fastest care ever for chest pain. In and out in under 2 hours with the ER MD doing my EKG himself. I was fine. I have come to realize that if I don't immediately get the PTSD panic under control at the first signs of pain, it can spiral into other symptoms. But with SCAD, we never know, so we have to get checked out. And though I have had every test under the sun and a myriad of diagnoses ruled out, including hypermobility, my cardiologist and I still don't know why it happened in the first place. But as time has passed, and I have mourned the loss of my pre-SCAD self, I have begun to travel and do most of the things I did pre-SCAD. Thanks so much for taking the time to read and respond to my original post. I wish everyone on here good health!