Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

This may be a rather long post. I have a lot to say. Please bear with me, and don't click awAy before finishing ;). My story started back in October of last year. I was 30 years old, fit and healthy. I had just arrived home from picking up my 2 older sons from school. I bent over to pick up my 5 month old to feed him and my vision dissapeared. I couldn't see my older ones standing right in front of me. I felt no pain but called my husband to tell him what was happening. He rushed home. Meanwhile, my oldest son (6 yrs old) grabbed the baby and helped me walk out to the car. My husband arrived and off to the hospital we went. Upon arrival, they took me immediately to get a CT scan. The doctor came in, told me that I had had a mini stroke and that I had left carotid and vertebral dissections. I spent a week in the hospital, then went home. They thought the cause might have been pregnancy. It was a complicated pregnancy and he ended up coming early and had to spend time in the nicu. They put me on coumarin and told me to follow up with my neurologist and hematologist. Almost a month went by when I had sudden chest pain. I thought I was having a heart attack. My heart rate was high, I was weak and shaky. My husband called 911. All I remember is being I'm the ER and After having a chest and abdominal CT, the doctor coming in and saying he's sorry, and that I have an abdominal aortic dissection extending from my umbilicle to my iliac. I don't remember the transfer to the bigger hospital. I was transferred because there was no vascular surgeon on call at that hospital. I remember waking up I'm the ICU and having a doctor tell me I would die from this(with my family right there). The vascular surgeon came om and said he would not operate on it unless it got bigger so I spent a few days in the intensive care unit before moving to a cardiac floor. I went home 8 days later. They pits on metoprolol to keep my blood pressure and heart rate as low as tolerated to minimize pressure om aorta. I have seen many doctors and had many tests since then(8months ago). No diagnosis and no explanation as to why I have multiple dissected arteries. My heart issues of skipped beats, SVT and sinus tachy have since worsened. I visit the hospital often with abdominal pain, palpitations and headache. No doctor seems to know what to do. I have severe lethargy, imcreasing frequency in palps and no answers. I have searched high and low for answers but with no such luck for answers. Scared everyday. I want to live a long healthy life and raise my 3 boys. I am happy that I found this site. I am not alone here.

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Comment by Cheryl Kerber on June 23, 2011 at 1:38

I hear you Christina from one mother to another.  I'm now 45, had my dissection at 38 but didn't know at the time.  I went in for a cough after I had turned 39 and they found the aneurysm on the chest xray which led to a ctscan where they found the extent of what I have.  I saw the vascular surgeon my MD sent me to, and after 5 minutes and 400 plus dollars, he sent me out the door and told me to get another scan in about a year.  (He didn't have the info from my MD, so he blew me off)

I did seek a second opinion from a referral to a surgeon at Abbott in Mpls, MN from a friend of mine who does ultra sounds there.  He went over everything with my husband and I explaining what I had and what it meant - he suggested going on heart meds as a preventative since I hadn't had high blood pressure and I never have smoked so I didn't fit the criteria either as to AD's.  Ironically - I never got a bill from this surgeon.

I ended up having emergency surgery due to a possible leak in my descending thoracic aorta, but the original abdominal dissected aneurysm was to extensive to fix during the 10 plus hour surgery they did.  So I still have the original section and have gotten 6 xtra years from it.  I am scheduled to have surgery this July 7th since my aneurysm has grown from a 4.2/3 to 5.6 in the last year and a half.  No symptoms really and that is why the routine catscans are a must as all they do is monitor.

5cm is the number they usually use as a basis for surgery for women.  It's 6 for men.  They say women's tissues are just thinner than mens so they do surgery earlier.

They never found the cause, but lately, the heart specialists my family has come across - all feel my 4 pregnancies most likely contributed to the weakening of the aorta, and having had pneumonia several times for years (I was a preschool teacher and pretty much got it yearly) probably didn't help either. 

My MD about 2 years back had to have his aortic valve replaced because he had got an infection into his blood stream from dental work which attacked and destroyed his aortic valve.  (He has been a bit more understanding to my predicament as he knows how lethargic and difficult to function these issues make it for us on a daily basis).

I too am on Metoprolol and some of your lethargy, heart palps and so forth can come from that med even though it is supposed to help you - it does have side effects.

Foods, smells, lack of sleep, timing of my meds, humidity, barometric pressure changes and the list goes on and on in regards to what can set off the "weird feelings" that come with having the aorta issues.  It's like I have become extremely sensitive (but a surgeon I once saw for a different condition told me that people that are sensitive to like epinephrine- as in novacaine - tend to be more sensitive to pain and the bodies reaction coincides with the aortic issues) -- I have no proof on that of course and when I bring it up in my yearly ER visits I often get the "adrenaline is a natural occurring item in our bodies" which is true of course, but anything that adds to it - just makes it worse.  It's like coming off a keg of coffee.

Where do you live in the US?  I am in Minnesota.  You will need to do some research to find a knowledgeable vascular surgeon to follow you.  If you can't find one, then you need to research some cardiologists -- ask the people who are scheduling or getting your info --- ask them to be honest with you in regards to who you should see --- trust your gut because that is your only honest guidance.  And it is worth getting more than one opinion.

I did see a surgeon from the hospital that I had my original surgery at, but even if he hadn't been honest with me by telling me they couldn't handle my surgery, I wouldn't have gone there -- it just didn't sit right - nothing against him.  So I went back to the hospital where that 2nd opinion surgeon worked and talked to the scheduler and asked her if anyone there was capable of dealing with what I had and that they were good --- the surgeon they sent me to fit my criteria so he will be doing my surgery 7/7.

The reason I am saying all of this (I know very lengthy) - is because you really need to be your own advocate --- I know it feels overwhelming and scary because you are a mom of 3 boys and you want to be here to raise them - not someone else - you were blessed with them and now you want to raise them --- I totally understand that.  The fact you survived what you have had is a great sign --- we too were all healthy and had no reason to have this happen based on the criteria.

You need to trust that you will survive.  They don't want to do surgery until it is absolutely necessary because it can be (and usually is) very extensive.  Because our abdominal aorta section feeds the spinal chord - there is an increased risk of paralysis.  They do have a specialist that comes in and tries to regulate your spinal chord fluid to help decrease this chance.

I know it is scary to know you have these ADs.  Everything you feel you will assume is due to the AD and you have every right to question it so don't hesitate going to the ER out of being embarrassed and always always let the ER know what you have so they don't blow you off if you check in.  They will test you for a heart attack and you will pass.  What we have does not show up the same way.  The only test that does is the CTSCAN.

I don't know what your insurance is where you are, but if you have any options for psychological assistance as most likely you could be experiencing post traumatic stress and anxiety which can also cause symptoms that are similar and if they are going to just monitor you, it worth finding some help there - whether it be holistic like healing touch, reikki and so forth, acupuncture, or just verbal talking --- it is worth it to help deal with the stress. 

Family and friends try to help, but it's just too hard to dump this on them or have them truly understand.  You will need to find ways for you to cope and enjoy your beautiful boys and so forth.  Believe it or not - you will appreciate so many of the smaller things in life now that you have your AD.  This is a life changing experience in so many realms - even including how you look at your friends and how others act.

My dissection/aneurysm runs from the base of my sternum down.  It incorporates my kidney arteries and so forth, so the they can't just slide in a graft and bypass the issue.  If yours stops before your kidney arteries, then question about the Endograft which they can do through the groin.  Like I said, they want to stave off surgery as long as they can because they do keep advancing in this area (even from just 6 years ago - they are doing the surgery a little less invasive - but surgery is invasive period and there is no getting around that).

Yours too sounds possibly due to pregnancy - but if you are like me, and I think you are, I wouldn't trade having had any of my children for not going through what I have and what I will be in the next month or so. 

You will read that alot of us feel like we are walking around with a ticking time bomb --- and that is so true.  You will always know you have this and everything you experience you will question, but over time, it won't necessarily be as "thick" as it is now.

First and for most (as I should finish this novel here) you need to connect with a vascular surgeon or cardiologist you feel comfortable with and trust.  Ask many questions.  Find out the measurements if you have an aneurysm -- it tends to follow a dissection.  You can have an aneurysm without a dissection.

Find out what your restrictions are --- for me - now marathon training, no bearing down exercises (like weight lifting - that doesn't include like arm weights like 3 - 5 pounds)  no shoveling, no push mowing, and I have a maximum weight restriction for lifting also.  As soon as I get sick with a bug, they put me on meds to stave off a cough to their best ability as some are viral and meds don't work for those.  But they said even the stress from coughing is a concern.

As to the metoprolol, see if the timing of when you are taking it, or what you are taking it with, helps with some of the side affects, or check with your doctors to see if there is another one you could try and see if it lessens what you feel.

You have 3 young kids, so I'm sure you aren't getting adequate sleep - let alone the stress and anxiety and fear you feel from knowing what you have.  Lack of sleep has it's own side affects.

The abdominal pain is another story.  If after the catscan and so forth shows no change and your doctors feel monitoring is all they can do, then you will need to find a route for you to cope with the fear and anxiety, but never never ignore any of your physical concerns and error on the safe over cautious side and just go to the ER.  The surgeon I trust said to always go there as they are the most equipped.  Always tell them what you have and where - you will go to the head of the line, and they won't just monitor you for a heart attack.

I know I said I would finish this novel --- there is just so much to say.

Just trust your gut, question up the wazoo here and to your doctors and find one that you trust -- and then go from there.

Trust you are meant to be here, otherwise you wouldn't have survived what you did. 

Right there with you and please keep in touch.  If you have more detailed info as to measurement and so forth - it helps on this end as I've been researching for over 6 years --- I just found this site the end of January of this year - ironically just before I have to go do it all over again --- a total God send for me.

Cher

 

Comment by Kimberlee Jones on June 22, 2011 at 14:42

Christina I agree with Graeme, it's time for you to be in charge of you and your care. Demand answers and demand to know what the treatment is going to be or is now.  If necessary switch doctors!!  I was 34wks pregnant when my Ascending Aortic Dissection was discovered, I had emergency c-section immediately(as in straight from ECHO to OR) followed by surgery for my dissection the next morning. The answer given to me as the cause of my dissection was 2% of pregnancies.

 

Have your doctors run any sort of genetic testing to see if there is a genetic cause(which is the case for most AD) As Graeme said you don't fit the  pigeon holes as a AD sufferer, I was told that I was the wrong age, wrong sex and wrong color. Fortunately for me, my AD was large enough that surgery was a must. With AD and Aneurysms they wait until they are a certain size. They wait until the aneurysms/ad are large enough to merit the risks of surgery. So when asking your questions make sure you ask the size of your AD's, the locations, what size do they need to before before surgery is an option.

 

As a mother of 5 I understand all to well the fear of leaving your children without a mom. So use that fear as a motivator and make them give you answers!!!

 

*hugs*

We are all  here for you.

Kimberlee

Comment by Graeme on June 21, 2011 at 9:44

Christina, you are CERTAINLY not alone here! I am very moved and very angry at your story.. I do not know where exactly you live in the USA but I do think it is time for you to take a deep breath and DEMAND answers and a treatment regime from your doctors.

Not knowing why you have multiple dissected arteries is of course very important - but more important - actually CRITICIAL - is a well thought out treatment plan from your doctors/hospital that covers all contingencies. 

So, jump up and down - make a LOT of noise (!!!) and go to your doctors or specialists and DO NOT leave until they give you answers and this is in place. I know that you will get more indepth advice from others on the site who are in the much same situation as yourself which will back me up.

This is about YOU and your family. It's not about passing the buck as seems to be happening with you and a lot of other peole with AD because you dont fit into the so called 'pigeon holes' for AD sufferers. AD happens to everyone from 6 years old to 90, and it's now critical that the medical profession stopped treating it as a interesting but rare anomoly. Go get em' !

 

cheers

 

Graeme

Comment by Christina F on June 21, 2011 at 6:16
Excuse all of the typos, my phone pretends it knows what I'm trying to say.

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