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spontaneous coronary artery dissection - a research

Odia
1 Recommendation

Hi everybody
I had a heart attack 8 months ago, as a result of spontaneous coronary artery dissection. The ability to share feelings and professional information with others in this site really helped me in the recovery period. I felt that there are so many women who would like to study and to know more about this rare phenomenon.
I asked my cardiologist, who also teaches Medicine students, if one of his students might want to take the SCAD as a subject for his Doctorate work. He asked me to check first how many women would really like to participate (sharing information, medical documentation, questionnaires etc.).
I want to ask all the SCAD friends:
1. Would you like to take part in a study about SCAD?
2. If you have any idea, direction, thoughts etc. about it, please let me know.
My email is: browns@013.net (please write a subject, so I'll know it's not a spam). You can also send me a reply by this site.
Thank you!
Odia

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51 replies

wendylee

Odia,

I also had SCAD. I would love to help you out. I will also e-mail you. My e-mail is wmushel@new.rr.com.

-wendy

martzj

Hi Odia,

Nice to see you post again. I've been wondering how you were doing.

SCAD didn't happen to me, but I think a study of SCAD in women would be a terrific thing. On this site, it seems this happens mostly to women of childbearing age, often not long after delivery. Complex things going on.

Thanks for suggesting this. Hope you get enough women to justify a dissertation/research study.

Best wishes,
Jaynie

KAKLeon

Hi Odia! Great to see you again. I was so disappointed when the new website interrupted the ongoing chat of our "SCAD group." I'd planned to try to reconnect us by e-mail also, and am very excited to hear of the study you've organized.

I copied and pasted the SCAD discussion into a Word document on an ongoing basis, if you'd like that as a foundation for the data.

Count me in for the study ... I'll email you directly as well. (KAKLeon@verizon.net)

Katherine

Odia

I want to thank first to all of you who replied (here and directly to my e-mail). Next month I'll see my cardiologist and we'll see if we can advance; I hope more women will reply so there will be enough participants (right now we are only few).
All the best
Odia

titi4

Hello Odia,

I am new to this wonderful site and was happy to see your post. I had SCAD 10 months ago a week after the birth of my son. I needed to have bypass surgery to save my life. After much research and discussions with my doctors, I was told it is very rare and survival is slim. How happy I was to find other survivors on this site. I was hoping that another SCAD discussion would soon occur....I would like to read and share details. Please include me in the study.

All my best,
Christine

CJM3

Hi Odia, Hope you are well. I too had SCAD with no known cause. My story was featured in the September 2008 issue of Fitness magazine and I recently did an interview at Fox News with Dr. Manny about it.

Count me in for the study!

Sharon

Stephanie2

Hi Odia

Thanks for your email
Please count me in as well

nancygrace

Hi Odia,
I was recently speculating that SCAD does not get research dollars b/c there is no money to made in prevention or in any specializing treatment (can it be medically managed? Heal on its own? Is stenting the best approach?-No one knows for sure) since the cause is uknown and supposedly it is so very rare.

However, regarding rarity, I have to wonder how often scad goes undiagnosed in women who themselves or their doctors attribute it to anxiety or something non-heart related, since there are no apparent heart disease risk factors associated with it. Additionally a dissection (supposedly) can heal on its own which could be another factor in it remaining undiagnosed.
I'd be interested in participating.
nancy grace

Odia

Hello all
thanks for all the replies.
If you can be in touch with other SCAD friend whe haven't replied yet about our hopefull study, please do it!! (we're 14 by now, but there are at least 25 other SCADies who, I guess, haven't looked at the site recently).
Odia

teriryan

I experienced a SCAD on July 18, 2008 while exercising at the gym. I was fortunate to be close to a good hospital and a stent was inserted to unblock my Left Anterior Descending artery. My doctors at George Washington University in Washington, D.C. indicated that they were going to use my event for a research paper on SCAD (not sure where that stands). My sister-in-law's daughter-in-law had a SCAD in March 2007 shortly after giving birth to twins. Given these two incidents of what is supposed to be a very rare condition, I think SCAD may well be under-diagnosed and would like to participate in the study. Please let me know how I can help.

Teri

teriryan

Sharon,
My sister subscribes to that magazine and sent me your article...she was amazed to find someone else had experienced what I had undergone in July 2008 given the reported rarity of SCAD. Hope you're doing well.

Teri Ryan

CJM3

Thanks Teri- I am amazed as well about the number oof women who seem to have it. I am going to my cardiologist on Wednesday and I am curious to know the following:

My incident of dissection has no known root cause. we have theories but nothing concrete. Most dissections occur after the birth of children. I am wondering if the rarity of it occurs in not knowing the cause. I was told that I was number 156 since 1922 of this being reported.

Hopefully I will be able to shed some light on this after speaking with my doctor. Will let you know!

SHaron

martzj

Ladies,

Given the fact that 4 young women have appeared here in the last few months with SCAD, I'm going to put myself out there and speculate that, while SCAD may be occurring less frequently than the other spectrum of critical heart issues, it is by no means 'rare'.... Women are here in droves who were just completely misdiagnosed. Personally, I am uninterested in current medical female cardiac distress statistics. Having lived through the years of dead wrong diagnostics, and seeing these practices continuing to prevail, I believe all current statistics based on medical charting are highly suspect...as in, not provable, possibly totally invalid in many many cases. Any woman who was sent home from an ER or doctor's office in cardiac distress only to return to an ER soon after found having heart attack fits this misdiagnosis category. But the original charts declaring the first presentation with heart attack to NOT BE HA, was invalid...yet still makes it into the records as valid.

Hope Odia gets a research grant and dissertation support. Badly needed. SCAD is a barely survivable incident unless caught in time.

Jaynie

KAKLeon

Hi Christine ... hope you're doing well. I can relate to the road you're on with a new baby and bypass recovery. When you have time (as if!), search for "spontaneous coronary artery dissection" in the Find It box above, and you can click through the history of SCAD as we know it here on the WomenHeart board.

Best wishes ... let me know if you have questions.

Katherine

KAKLeon

Hi Teri. I'm in Alexandria so if you need anything or ever want to compare notes over coffee, let me know.

Hope all's well.
Katherine

teriryan

Hi Katherine. I'd love to get together to compare notes. My next appointment with my cardiologist is October 28, so perhaps we can meet after that for either lunch or after work in Alexandria. I work in DC, live in Fairfax Station.

Given that I have no risk factors for heart attack (no cholesterol or blood pressure issues, no family history, nonsmoker, exercised regularly, etc), my doctor's best guess is that my SCAD was attributable to a recurrence of ulcerative colitis, an autoimmune disorder, which I had in the spring and was being treated for until June.

Thanks for the response.
Teri

athenak

Hello,
My name is Athena and I had a SCAD in the left circumflex artery in Feb. 05 at age 42. I would be very interested in participating in a research project. It's been completely rewarding to find this site, as I was desperately searching for answers this past week because I ended up in the hospital with shortness of breath, spasm like chest pain radiating down my left side... I was observed for the night and sent home... this has happened several times (once a year at least) since my original attack. What was fascinating when I read the many responses of women w/scad... is that many have similar ongoing symptoms. My cardiologist treats me like I'm a whining female, and that I "just have my radar screens up"... I'm not on any meds other than aspirin and niocin, I don't have any regular check up testing, and when I went to my first meeting w/the cardiologist after my SCAD (have 2 stents), I was told by the doctor (not the one who did the surgey)... "oh, my your the one... I'm sorry I'm not prepared for this visit.." she left the office and came back with some basic information she printed off the internet... (which I had already done)... and I really don't feel that this practice is at all interested.... so after this week when I ended up in the hospital... I'm determined to find a cardiologist, in the central NY area (I live near Ithaca, NY)... so if anyone knows of one...I'll travel if I have to.
I look forward to a lasting relationship with all of you and I am extremely thankful for this wonderful site.
Athena

heartmother

I was told by the cardiologist that put in my stents that it was a SCAD.It is even in his cath reports. The artieries definatly dissected and I had four long stents put in. But the controversy afterwards has been very strange. My cardiologist said that it was not SCAD because it is very rare and most women do not live to talk about it. When I looked it up it sounded just like what had happened to me, even the fact that I started my period in the ER while having the heart attack. I would be interested.

Odia

Dear Katherine and others

Sorry I haven’t been in touch for so long. We had problems with our computer, and Just now we finally have a new computer working. We also couldn’t get emails because our box was full and we didn’t have a computer to empty it…

Anyway, I’m back to work now….

My doctor was impressed with the number of women who want to participate, although he said it represents only those who survived… We decided to be in touch when I have a computer again. keep your finger crossed… I’ll let you know how we advance…

Odia

KAKLeon

Hi Odia. We've been in e-mail limbo too, but are finally set up. My new address is: katherine@fsirenovations.com.

I'm glad your cardiologist gave a favorable response! I don't understand his comment about "only" survivors, though. Seems like quality of care is determining whether we each have survived this (and a lot of good luck!). I would bet most women who die from SCAD didn't survive because the doctors ignored them, or delayed care and the heart damage was too great.

Will look forward to more news ... thanks for the update.
Katherine

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