All the SCAD ladies, put your hands up

• By mmuff
• Reply 553036
• September 23, 2009 at 3:13 pm
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Hi Laura
I had my SCAD coming up on five years this November when I was about to turn 46. I have had four pregnancies but my youngest was 10 at the time. I had started menopause quite young 36/37 and was pretty much on the down hill slope of it. My menopause was fairly tolerable compared to others I think.
When I was in the hospital and my husband or someone maybe even me(drugged up) asked the question if it could happen again. The response was "well it did happen once already" Exceptional bedside manner don't you think?
I have found that all docs seem to have a different opinion about a re-occurrence.
I don't think they have any idea because it is so puzzling in the first place and they like to tell you that you are a miracle and go home and be thankful to be here. What they don't tell you is that you will be terrified with every hiccup for quite a while. There should be some kind of therapy session before you go home. Some one to tell you that you are going to be looking at things differently now and will go thru stages allot like mourning because you will have emotions all over the place and that is normal.
The best thing you may have done for your recovery is to come here and meet so many wonderful people who will help a great deal. Good luck and stay strong.
Martie

• By wendylee
• Reply 553150
• September 23, 2009 at 4:49 pm
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Hi Laura,

I too had SCAD. Click on my name to read my story.

- Wendy

• By spared
• Reply 553495
• September 23, 2009 at 9:12 pm
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Hi Laura,
I am also a SCAD survivior. I had a heart attack after running four miles. I have no family history or health problems. My only risk factor was that I was on the pill for several years. The doctors have ruled out any connective tissue disorders and it was not pregnancy related. After going to the ER they did a cath the next day and found a 95% blockage in my LAD. They could not get a stint through so I had open heart surgery where they used my mammary artery to by pass below the dissection.

I finished cardiac rehab last week and have started going back to the gym. I am on a statin, baby asprin, and lexapro. I was on metoptolol...but it made me feel so fatigued. I doctor said I could come off of it and I hope that is the right decision as I know that it keeps my heart from having to work as hard. Three weeks after the open heart surgery I cried all the time and was constantly afraid of it happening again. The lexapro has helped with the anxiety and slowly life is returning to normal. I still hug my boys extra long and I don't take things for granted. God is faithful!

The doctor claims that there is little chance that this will ever happen again...but, I wonder everytime I have a weird pain. I wish there was a specialist who would research SCAD.

I am so thankful for all my SCAD sister.

• By karma328
• Reply 553693
• September 24, 2009 at 12:07 am
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Hello everyone,
I am a recent SCAD survivor. I am 32 years old and I had a heart attack 9 days after delivering my 4th child. However, I didn't go to the hospital until 2 days later. (Never thought it could be a heart attack). I had an echocardiogram (heart ultrasound) done and it determined the my EFT was 15-20%. 3 days later I had a heart cath done and that's when the dissection was discovered. 8 days later (5/28/09) I had a bypass using my mammary artery.

Since I have been home, I haven't had any rehab. I see my cardiologist once per month. I am taking Lisinopril, Coreg, Plavix, and 2 low dose asprins. I also walk 3 miles 3-4 days a week.

Yesterday I had another echo done and to my disappointment, my EFT is only 20-25%. Now they are reccomending that I have a defribillator put in. I am not sure what to do. I was also told that the chances of having another heart attack was slim.

At this point, I am emotionally drained and trying to stay positive but it is difficult. I thank God that I am alive and here to raise my children.

• By NZGirl
• Reply 553866
• September 24, 2009 at 8:03 am
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Hi there,
My name is Sharon and I live in Hastings, New Zealand and I am married with two sons aged 9 and 11. My SCAD event happened almost three years ago in December 2006. I was 43 years old, and it was a lovely sunny Friday morning before it all turned to custard, and I ended up in hospital diagnosed with an MI. A small part of me even now is still waiting for someone to tell me that it was all a big misunderstanding.
SCAD was diagnosed during the angiogram, and two stents were fitted to my LAD. I was discharged from hospital almost a week later with a script for Aspirin 100mg, Metoprolol 95mg, Plavix 75mg and Lipex 20mg . Three years later I still take the Metoprolol (they attempted to wean me off that after one year but it wasn't successful) the Aspirin, the Statin, plus Omeprazole 40mg (because my tummy decided that it didn't like that Aspirin....).
I do get tired very easily, but three years on I am generally quite well and feeling pretty good. Yes, I do worry whether it will happen again, but not as much as I used to. I do wish there was some test they could do to let us all know for sure and put our minds at rest. Wouldn't that be great??
I think it's a great idea to get us SCAD ladies together Laura! XXX

• By Madelainemae
• Reply 554247
• September 24, 2009 at 11:31 am
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My name is Michelle I am 45 years old living in the UK. I had my first dissection when I was 40 years old in my circumflex artery and my second 6 months ago in my LAD. My dissections are not related to pregnancy or a genetic disorder. I am fit and recovering well without any treatment. From my most recent angiogram we know that the first dissection has healed well, hopefully the second one will/is doing the same. This group is a great idea to put people in touch, as I have long suspected that there are more sufferer's than I have been told exist.

• By Asurvivor
• Reply 554430
• September 24, 2009 at 1:46 pm
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Ladies, let me ask you all something. We all have this in common - failed cath, followed by bypass for a "SCAD." Mine wasn't a "SCAD," my doctor told me the truth. Oh he tried to call it a "scad" to my cardio, but he told my husband the absolute truth about it. He slipped. It was the doctor who dissected my artery and the rest of them while he has at it, sliding across my heart. I had two stents in the original artery and an emergency triple bypass and this "SCAD" won't ever happen again, because I will never have another cath. But, you are all saying you were told this "SCAD" was "found" during your bypass. Is there really such a thing, or did your doctor make the same mistake mine did?

I looked it up and couldn't find much on it either, so it seems we are told "SCAD" when it really is "PECAD," physician error artery dissection. Makes me wonder, they like to hide so much. My sister underwent 3 angioplasties and nothing happened. My brother in law had one and he's fine. They used the same doctor. I'm in a different state.

• By laurahc
• Reply 554672
• September 24, 2009 at 4:35 pm
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Hi everyone,

Thanks everyone for chiming in! :) If you don't mind, I'm going to reply to everybody all at once, and I think I've sent you all "friend" requests now, If we weren't already WH friends.

@Martie: I swear, some doctors have the bedside manner of a toad! It's wonderful to hear from women like you, who are five years out from your SCAD--you're living proof that we can get through this, which is really important in those early days when we first get home from the hospital and we're all still shell-shocked and overwhelmed.

@Wendy: Thank you so much for linking to your story. It's really frustrating to *know* that something's not right and to be blown off by the doctors. I'm glad you were finally seen and that they found the second blockage. I know what you mean when people tell you that you're "as good as new," or "back to normal." It's like, OK, what normal?

@spared: Oh, the metoprolol fatigue, I'm with you there. My doc took me off it back in July and it was a huge relief to finally not feel like I was moving in slow-motion all the time. I was on lexapro for a bit too, and it does help with the anxiety. Cardiac rehab was an excellent confidence booster for me as well. Every session at rehab where nothing went wrong was a new layer of self-confidence regained. I too would like to see someone specialize in SCADs.

@Sharon: As with Martie, it's so great to have you here! It's really crucial to have women like you who've survived your SCADs and are several years out from them to tell us newbies that it really will be OK, that we'll settle down and eventually not panic about every little weird pain.

@Michelle: Wow, two SCADs, that sounds a little unusual, but I'm glad you're recovering well, and I hope the second one is likewise healing.

@Asurvivor: I can't speak for everyone else, but I didn't have a bypass, I had an angioplasty and stents.

When they did my angiogram, they saw a tear in my right coronary artery. The tear was what caused my heart attack.

Thus, my artery was already ripping before the angiogram, but the force of the dye injection, which is similar to the pressure I put on my circulatory system during moderate-to-heavy exercise, caused it to tear the rest of the way.

If it hadn't happened there on the table in the cath lab, it would have happened the next time I started exercising, and I wouldn't have been in as good a position to survive it.

I don't doubt that physician error occurs, but in my case, contrary to causing my SCAD, the doctors in the cath lab saved my life.

-Laura

• By Madelainemae
• Reply 554716
• September 24, 2009 at 5:06 pm
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Asurvivor. The SCAD's caused my heart attacks. I was told when I presented at hospital after a heart attack and cardiac arrest, that due to my profile I had probably had one of two things. It would either be a dissection or a spasm of one of my coronary arteries. I was young, fit, thin with no family history or underlying conditions. I had/have low blood pressure and cholesterol levels. It turned out to be a dissection (both times) and although I do believe that doctors are very capable of making mistakes my cardiologist was nothing but fabulous in the way he treated my condition.

• By Asurvivor
• Reply 554745
• September 24, 2009 at 5:34 pm
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Just wondering ladies. It all seemed so familiar. I hate to have you all go through life wondering if it will happen again.

I was thin also, but a smoker. That's what caused my HA. I had no dissections before the cath.

Thanks for your insight.

• By NZGirl
• Reply 555229 · In reply to 554430 by Asurvivor
• September 25, 2009 at 5:37 am
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Hello there Asurvivor,
I just wanted to reiterate as well that my SCAD was found at during the angio (cath), and definitely not caused by it.
There are indeed documented cases where the angio has caused an existing dissection to extend - that is unfortunately a complication from having to 'go in' to an already weakened and split artery.
My wonderful cardiologist actually suspected SCAD even before my angio due to me having absolutely no risk factors for heart disease, i.e. no weight, blood pressure, cholesterol problems, not a smoker etc. He told me what he suspected before I went into theatre, and he was proved right during the angio. I could not praise him enough for his standard of care and his knowledge.
SCAD is still most often diagnosed at autopsy, and they do not use angio at autopsies. So the condition is not caused by medical intervention, it is discovered by it and many of us owe our lives to that method of diagnosis.
We all live with the fear of it happening again because us 'SCADdies' were almost all fit, healthy women and our SCADs happened without a reason (some have subsequently been diagnosed with conditions which cause weakening of the arteries, but in the main we do not have any reason why it happened). It just did. But we know that we are alive, that we are very very lucky, and that every day is a new and wonderful day. Take care, Sharon

• By Asurvivor
• Reply 555271
• September 25, 2009 at 7:36 am
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Sharon,

I really had never heard the term before and am quite sure none are found until a cath.

Are they found or did they happen by error and they are using the term SCAD to cover up, was my question. Unless we were awake and saw the dye go in, we are just going by what they tell us. Mine confessed to me. He admitted a mistake, but to my local cardio, he said he didn't know what happened. I read my chart and so did my husband and he set my cardio straight. The records reflect the error now. Did they happen spontaneously to or did the doctor just tell you that?

Of course they saved your lives, they have to put a stent or two in to close it. I needed a triple, because it happened in 3 vessels all at once, not just one.

Sharon your case might have been totally different, no risk factors, but reading a lot here, I find people still are smoking. I smoked and had high numbers (but I didn't know) and ate all the wrong foods, but I was only 54 and weighed 110 lbs soaking wet. I have no risk factors now, except for a prior MI.

Mine occurred during a cath, but it wasn't on it's own. I don't think I'm explaining myself well, so I'm going to let this go. I hope all of you continue with good health and that you don't have any more problems. We are all lucky to be here today!

Take care!
Lynn

• By amy6
• Reply 555791
• September 25, 2009 at 2:46 pm
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I had MI at age 48 (Nov 2006) due to SCAD in LAD, though it's hard to know which came first-- the dissection caused the MI or the cath (with 2 stents) caused the dissection.

When I had a cath Feb 2009 due to restenosis of 2 stents, more dissections occurred, so more stents.The dr said my arteries are paper thin and just shred when the catheter goes through.

So there may be multiple problems that are all getting labeled SCAD. Let's at least get us all counted here. A "census of SCAD survivors" would help folks like the AHA to pursue better education for women about heart attacks when we have none of the big 5 factors.

Here are things I wonder about:

1. should the AHA recognize SCAD as a particular subset of women's heart disease and give it some research attention?
2. why do all of our doctors think we are so rare, when this discussion list tells us otherwise? Where might they be able to learn the scope of how many of us have this diagnosis? medical journals? The medical/cardio community is behind the curve of this.
3. since there is really no substantive science on SCAD, and it seems to mostly affect women, is NIH interested in any research on it? My hunch is that there are too few of us (even with the numbers of women reporting on this discussion board) to warrant it.
4. I wonder if the media would be interested in an investigative story on why so many women die of heart attacks compared to men? It may be because we don't yet understand or diagnose SCAD. Are any of us journalists or connected to journalists?


I know we're all grateful to just be here.
blessings,
Amy

• By laurahc
• Reply 555803
• September 25, 2009 at 2:57 pm
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Hi Amy,

I've wondered about that too, the rarity in the medical literature versus the number of women here who have them--when I first got home from the hospital and starting researching SCADs and was reading online about how supposedly rare they are, then I got here to the WomenHeart board and was finding several women like me who'd had them and survived.

On one hand, it's great to find other women who've come out the other side and are not only surviving but thriving; on the other hand, it's a bit puzzling about why the medical literature calls them so rare.

I wish the AHA would say *something*, anything, about SCADs on their website. I love WomenHeart, but before I knew this group existed, I went to the AHA's website first, and they had nothing--zero, zip, zilch, nada--about spontaneous dissections.

My sister is a freelance writer who's done stories for Better Homes & Gardens and other national and local publications. I may be able to talk her into doing a story on us; she'd have to pitch it to a paying market first. I'll run the idea past her and see what she thinks.

-Laura

• By Sparks
• Reply 556489
• September 26, 2009 at 9:38 am
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I am a SCAD survivor as well. I had a heart attack exactly one month after having my daughter. They did a heart cath and sent me to ICU. In two days, I had SCAD in my LAD. They rushed me to OR and I ended up with nine stents in that one artery. This happened in 2005 when I was 34 years old. No prior history either. I am so glad you asked about SCAD. Its nice to finally get some answers.
Sandra

• By Kim84
• Reply 557607
• September 27, 2009 at 10:27 am
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Hi,

Just wanted to add my name to the list. I had a SCAD in September 2006. I was getting ready to go to bed when I developed the chills and felt very ill. Within minutes I had severe chest pain. I called 911 and after it was determined I had a heart attack (caused by the SCAD). I was taken to the cath lab and had a stent put in the proximal LAD. I spent several days in the ICU as my EF was very low and I was still experiencing chest pain. The doctors went back and attempted to balloon the RCA as they thought that was narrowed (apparently not a blockage but due to an arterial spasm as I found out much later). When they ballooned that artery it dissected so I ended up with three stents in that artery.

So, I've been fine every since (except for one weird episode about 9 months after the original). Mine was most likely due to a connective tissue disorder based on findings of a geneticist at the NIH as I am active, healthy with absolutely no risk factors.

Just passed my three year anniversary. I think the second year was the hardest for me mentally. The first year I was angry that it happened, was just trying to find answers, and keep family and work under control.

I think SCAD is rare enough that there isn't much impetous to put research dollars into studying the causes. Until the last 10 years or so, survival rates were very low (before stents,etc). So that I think that is why there isn't much out there.

Best to all of you,

Kim

• By daisy29
• Reply 559778
• September 28, 2009 at 11:08 pm
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I am 29 and a recent SCAD survivor. I had two heart attacks two weeks after my daughter was born. I made it to the ER during the second, they performed an angiogram and the main part of my left artery was torn. I was rushed into triple bypass surgery that night. This was 6 weeks ago and has all been very scary. My doctor says I am very lucky to be okay and still have a healthy heart. They say it was due to pregnancy and I pray it never happens again. Sometimes I feel like I just can't get answers. I am just focusing on healing from this surgery and when things get really hard (like not being able to hold my babies yet) I am grateful that I am alive to see them and watch them grow up.

• By laurahc
• Reply 560218
• September 29, 2009 at 10:16 am
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Hello Daisy and welcome to the group that no one wants to join--but we're glad you've found us. At only six weeks out, it's perfectly normal to still be scared and worried. I didn't have a bypass like you did, I had angioplasty and stents, so our recoveries are a bit different, but I can relate to being completely freaked out by the SCAD diagnosis. Like you, I didn't have any risk factors, and while I'm not as young as you are (I was 40 when mine happened back in March), I still think of myself as "young," LOL.

Anyway, again, welcome to WomenHeart and to our little group of not-as-rare-as-doctors-say SCAD survivors.

-Laura

• By martzj
• Reply 562380 · In reply to 555791 by amy6
• September 30, 2009 at 7:40 pm
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Amy,

I've been thinking nonstop about all your questions since I first found this site and began visiting daily in 2008......You are so right in that here we see a steady stream of women being told ALL their heart events are 'rare'....when that doesn't appear to be the case. It made the hair stand up on the back of my neck. And possibly goes a long way towards explaining why women face a 43% chance of dying within first year of HA, men about 27%.

Today Obama announced the sum of 8 billion dollars is being awarded in medical research grants to kick start and breath new life into the many areas that were nearly killed off during the Bush administration. Cancer got big billing.......but adult stem cells and other research at the DNA, genetic and molecular levels have the possibility of breakthroughs in cell manipulation that may benefit many other human ailments than just cancer.

"1. should the AHA recognize SCAD as a particular subset of women's heart disease and give it some research attention?
2. why do all of our doctors think we are so rare, when this discussion list tells us otherwise? Where might they be able to learn the scope of how many of us have this diagnosis? medical journals? The medical/cardio community is behind the curve of this.
3. since there is really no substantive science on SCAD, and it seems to mostly affect women, is NIH interested in any research on it? My hunch is that there are too few of us (even with the numbers of women reporting on this discussion board) to warrant it.
4. I wonder if the media would be interested in an investigative story on why so many women die of heart attacks compared to men? It may be because we don't yet understand or diagnose SCAD. Are any of us journalists or connected to journalists?

good questions Amy,
Jaynie

• By Jubes
• Reply 567997
• October 5, 2009 at 8:54 am
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Hi everyone, just putting my hand up and sending out love to any newbies. My SCAD is nearly three years old now... I wish I had found you all earlier. There is life after SCAD.... The path I took was denial, followed by a great big emotional crash, then one day I got bored with it all and started living again...

I am a NZ woman living in London with my family. In 2006 at the age of 46 I suffered a heart attack due to SCAD. I had no risk factors, and was very healthy at the time, in fact the day before I had gone on a 40 min run. My children were 5 and 7 at the time. I don't have connective tissue disoders but I am tall and very bendy... I thought I was just great at yoga! The SCAD was in my LAD and I had 5 (drug eluting)stents implanted. Unfortunately they subsequently failed and my LAD is now 100% occluded with scar tissue. That part of my heart is functioning on collateral circulation. Not a bad as it sounds! I am surprisingly well and happy to be alive.