Aortic dissection & aortic aneurysm information support group

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

Last Sunday I did not feel very well. After having dinner, I began to have abdominal and lower back pain. It was similar to the original dissection pain. But since I had some pain before, I figured it will go away in a few minutes. I presumed it was related to the dinner. I took a couple of Tylenol and wen to bed. Around 1:30 AM, I woke up with more pain. I took my blood pressure and it was 129/85. It was high because my doctor wants to keep it under 120/70. At that time, I decided to go to the hospital. 

After explaining my condition, immediately they took me to CT scan machine. About 45 minutes later they came back with the news that my left kidney had infarcted and I have to be admitted. Several tests were done trying to figure out the origin of the thrombosis to the kidney. I was in the hospital for 4 full days and had to go back yesterday for the final results: 

There are complications with my abdominal dissection. Therefore a second surgery is needed. This is the descending aorta, which was not fixed during my ascending aorta surgery. My dissection goes all the way down to the illiac area. The concern is the possibility of another embolism to the kidneys or the intestines which, could be fatal. 

When the thoracic surgeon gave us the news before leaving the hospital, I was devastated. The idea of another surgery was inconceivable. However, by yesterday, when he confirmed the news and presented my options, I was feeling stronger. A tiny hole in my heart (Arterial Septal Defect) was also found during the testing. Apparently I was born like that. But, in comparison to the aortic complications, this is the last thing the doctors are worried about. 

The options presented to me yesterday were as follow:  

1-Endograft, which will be inserted through the groin area. The graft serves as a lining to the aorta. The hospital stay and the recuperation is minimun in comparison to a traditional surgery and repair. 

2- A traditional surgery and repair of the aorta with the need to cut an incision from the abdomen to the back including the ribs. 

3- Medical management with blood thinners and the high risk of rupture of the aorta and the tremendous side effects of the drugs. 

I hope you can help me decide what my best option is. Perhaps someone in the group has had similar surgeries and would like to share their experiences. I have a few days to think about it. The doctor wants me to make an informed decision, but I cannot afford to wait too long. Every option brings its own risks. I am leaning for the Endograft, but since it is a fairly new procedure, according to the doctor, I do not want to just take the easiest way out.. 

 

I hope to hear from you soon..

 

Thank you,

Maria T

 

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Tags: ABDOMINAL, COMPLICATIONS, DISSECTION

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Comment by Cheryl Kerber on April 23, 2011 at 2:18

How are you doing Maria?

I meet with a vascular surgeon this Wednesday --- the ER suggested that I have contact with one even in monitoring mode as to get guidance for the what if and what options are available for the just in case.  So far I've been mainly dealing with my GP, but the reality is always there - as you are dealing with now.

He's young (at least in my eyes) - which has its advantages and disadvantages of course -- having an older surgeon allows you more experience of course, but the younger may have more "current" advice.

I guess I just wanted to check in on you as I have been thinking of you alot lately.

Take care,

Cher

Comment by Cheryl Kerber on April 13, 2011 at 14:22

Maria,

I'm sure you already researched all the internet stuff in regards to your options.  It made me look into the info also and one of the websites, though fairly basic http://vasculardoc.net/content/aortic_repair.html as I read through it, I can see why my surgeons have been hesitant in regards to using it for me since you have to be a good candidate for the actual procedure and type of graft.

I'm sure that your surgeons would have already reviewed your scans and determined it would be an option for you otherwise I don't know why they would have even posed it, but I may be wrong.

I know for me, the biggest fear I have in regards to the more extensive surgery - is just that -- it's more extensive and we already know how long it took to recoop the first time around.  I have reached a point of not caring about the scars anymore -- I have too many pretty much on every portion of my body as is.  The thought of all the muscles, nerves, etc., that will be affected of course comes to mind also. 

But the success rate of the original surgery is what of course stands out.  I know the endograft is newer so of course they aren't going to have the long standing history yet in regards to "years down the road".

If the fear of post surgery pain and recoop time were not a factor - what does your gut tell you as to which direction to go?  I know that sounds stupid, just like when they ask you if money weren't an incentive, what would you like to do with your life?  The truth is, we pretty much get an original direct answer and then we mud it up with a thinking it through.

You are a strong healthy person.  You have been physically active as you've written in your blog - so you have alot going for you with either surgery.  Why our vascular systems are weak I don't have an answer for, but your will is strong.

Since your kidneys are affected already, have they stated whether one surgery is better for that than the other?

My heart is still with you on this journey and I believe that whether you go with the original surgery or the "gumby" (remember the green bendable plastic toy - they tell me that is the nickname for the endograft because it kind of looks like gumby)  everything will turn out great!

Keep in touch,

Cher

Comment by Richard Deal on April 12, 2011 at 11:30

hey maria,

i have been all over the place for work recently so haven't been on much... sorry!

this is what i imagine how my next surgery will happen. so i have already researched it and come to terms with possible options for myself.

i would rather go with the second option, when my time comes. to my way of thinking the one big operation is much more attractive than the medical course of action or the graft. everything is out of the way, and there would only be a small portion of my original aorta left to cause headaches in future. The endograft does have high success rates and very few complications, but i'd rather get rid of the troublesome aorta than simply put a tube through it...

hope that this helps,

r

Comment by Alison Roberts-Pagent on April 11, 2011 at 19:22

I agree with Kimberlee.

By the time you read this I'm sure you will have made your decision. 

A huge BIG hug and much love.

Stay in touch x

Comment by Graeme on April 10, 2011 at 16:45

Hey Maria... been busy as so have not been on the forum much lately..so opened it up to read of your news.. So sorry..am thinking of you and the family at this time..but as one of our original members there is a LOT of us here for you now.... I have done a bit of research and the endograft sounds like the best option for minimum surgery and recovery time, but, in the end, I always pretty much leave it to my docs and specialists - but with 2 opinions (?) As Kimberlee also suggested check out the two procedures in relation to success rates ... And as for a convention - yes I sorta have thought of that but we will need some time to set it up as we live all over the place.. maybe we also think about having it in a watchmakers guild hall here in London (drown out the tick tocks.. :-) You take care (!) and keep me and the other members posted on your progress.... and you are going to be ok!

 

cheers

 

Graeme   

Comment by Maria Trinidad Herrera on April 9, 2011 at 18:55

I thank everyone for your support and honesty. That is what we need from each other. Do not worry about offending me. I am very lucky to have found this group. I just wish someday we could met in person. Perhaps some day we could have a convention (Graeme). 

I am having a family meeting tomorrow to discuss my options with my children and siblings. I am feeling stronger and got to the point of acceptance. I am aware of the possible complications of either surgery. 

Cheryl, our condition is very similar, except my dissection began in the ascending aorta. The rest is the same. Everything you mentioned in your comment, I was told by the doctor. But I am not very good in explaining medical terms.  Reading your story and comments has helped me a great deal. 

 

 

Comment by Cheryl Kerber on April 8, 2011 at 1:06

Maria,

I had the descending thoracic aorta replaced due to a possible leak back at the end of 2004.  My dissection runs through my abdominal aorta and reconnects just prior to my kidneys, but my illiac arteries are also enlarged.  I do have some clotting (thrombosis)in the aneurysm itself which they tell me is common and to watch for if my leg goes numb etc as it would mean that one dislodged - so I think that is what an embolism is at that point.

For me, I have an incision that runs from under my left arm, down to my lower left side rib cage and up my back left shoulder blade.  They had to remove 2 ribs - one at the bra line, skipped one(left it there) and removed the next rib down from that in order to get to my descending thoracic. 

I will not glaze it over --- the pain is tough.  They attached a novacaine ball to my rib cage while I was in the hospital to help with the pain (I can't imagine what it would have felt like without the ball!).  They put drainage tubes into your rib cage after surgery and everytime I moved, it felt like I was being stabbed --- I was thrilled when they were able to slide those babies out.

But if you have ribs removed -- just know -- it is very painful to laugh, cry, cough, breath deep and so forth.

I am not telling you this to scare you --- I didn't know until I came out of ICU.

There will be risks with either surgery.  There is success with either and no matter what - there is the recoup time and the fear and stress of knowing that you don't have an option (that is what it sounds like to me also).

The sad part is, is if you don't do anything, you will be constantly worrying -- knowing it is looming.

They have improved procedures over the last 6 years.  They didn't have that option of going through the groin and inserting it through your aorta.   It seems almost like a stent procedure they do with heart attack patients but more extensive due to it's location.

Like Kimberlee asked --- ask the surgeons and then see if you can get a second opinion or at least get input from the ones that would be performing the surgery itself.

The endograft would be less hospital time as it would be less invasive (incision wise and so forth).  My mom had a heital hernia repaired this past fall - where they had to pull her stomach down out of her diaphragm, stitch a graft around her diaphragm, and then make a balloon kind of structure - attach it to her top of her stomach to help keep it from sliding back up into her diaphragm.  This kind of surgery used to be very invasive, but she has three tiny incisions from them being able to do it laproscopically.  She was home in 3 days, compared to the 7 to 10 days normal surgery.

If your surgeons feel confident that the endograft will work then I would personally go for that just because I don't think my body could handle another large surgery.

I know that they have told me that because of the extent and location of my dissection and aneurysm that I too would most likely end up with the more extensive surgery that you mentioned.  They don't make it sound like I'm a candidate for the endograft.

So your surgeons I hope know what would be best for you and would be able to guide you.

I know it totally SUCKS --- I know you'd rather just not even have to think about it or deal with it --- and I wish I could be there for you physically.

It's what looms on all of our minds -- that whole ticking time bomb waiting to go off when we would have to face that same decision so even though we aren't exactly in your present shoes - it has all been very real in our minds from the day we become very aware of what we have.

Like Kimberlee said - trust your gut --- if you decide against the endograft, if they don't have to remove ribs, the incision will be painful but will heal.  The rib removal has it's own set of set backs which if you end up having that done, I can advise further. 

But even though I have had it done -- I survived and am 6 years post.  I'm not out of the woods as I still have the original, but I'm thankful I got 6 extra years.

I know you can survive this.  And since you'd be going into it aware --- check into relaxation, meditation, bio-feedback, healing touch -- whatever you can to help relax your body/mind/nerves so you can come out of it being stronger.

I hope I didn't offend you as I was pretty blunt --- but I would rather know --- I don't appreciate it when doctors say it's not going to hurt and it does and then you are left with thinking maybe it was all in your head --- which is sooooooo wrong.

Keep in touch if you can!!!!

Love,

Cher

 

Comment by Carol Pont on April 7, 2011 at 14:24
Hi Maria. I also agree with Kimberlee. I would research on the internet. Check out both surgical options. Work out which would be best for you. Let us know what you decide. I am thinking about you. Hugs. Carol
Comment by Kimberlee Jones on April 7, 2011 at 2:07
Maria, first I"m not familiar with these so let me just ask. With the endograft what is the survival rate and so forth compared to the normal surgery. I honestly would pick one of the two surgeries, if they are willing to do surgery then they must feel leaving alone is not the best option. My advice is to research the two surgeries, find out percentages and such, compare them to each other, then follow your gut feeling. Please keep us updated and know you are in my thoughts always.

*hugs*
Kimberlee

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