Aortic dissection & aortic aneurysm information support group

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

Hi everyone.

My hubby had AD type B ten weeks ago. He is managing his BP very well and resting a lot. We are both trying to be very positive and just plod through each day. Yesterday we went for a walk, and during this he complained of hip/thigh (his right one) aching a lot, so we came home quick. Is it usual? His BP when we got home was 113/58, so that seemed OK.

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Comment by Cheryl Kerber on October 1, 2011 at 20:59

Sorry I missed that - I will see if I can find your blog if you have one on here.  First - do you know how large his AD is and where it runs from?  My dissection ran from my sternum down to before the split in my legs.  My aneurysm they feel came after my dissection - but it grew to 5.5cm which for women they feel 5 cm is the for sure do surgery marker (unless there is alot of other health issues to consider where surgery would be even higher risk).  For men, the marker is 6 cm - again they will look at risks and see which is higher.

For me, I needed to have it taken care of before it damaged my kidneys and so forth.  As is, my kidneys were being fed off of the smallest portion of the dissected area.  Where I was at in risk percentage was in my surgeron's words -- I had an 8 % chance of my aneurysm bursting at that moment.  Doesn't sound too bad, but you don't feel the aneurysm as it is growing so you never know until you have another scan run.

The risks are high during surgery as your aorta runs so close to you spinal chord and the risk of paralysis is upwards of 10%, but they try to manage your spinal fluid during surgery which helps decrease the risk.

I know this is all technical info -- but I just wanted to let you know that it is survivable.  It is painful - I won't lie about that - but they have good pain meds and pain management systems in place that they didn't even have how many years back.

The only way they can manage a dissection/aneurysm is through BP and heart meds.  They also gave me restrictions to follow - like no push mowing, no shoveling, no weight lifting, no marathon training, no isometric exercises --- nothing that would cause you to hold your breath too long or to push too hard (like giving birth - so I'm glad I had my 4 kids before this happened to me).  Oh and no roller coasters or rides like that - I'm sure I'm safe with the Merry go round :).  No horse back riding - nothing too jarring - activities like that.  It's a bummer in many ways, but if it means I can live longer than I will abide by their suggestions. 

Does your husband (sorry, I didn't see his name) have an aneurysm also?  How did you find the AD?  Did they give him any restrictions?

I went in for a cough a year after my dissection (which I didn't know at the time what had happened as I thought it was an anxiety/hyper ventillating attack when it was occurring - I was only 38 --we were on vacation so I didn't want to deal with it) - but this cough I was experiencing was a pressure kind of cough -- I didn't have a fever or anything like that.  I was talking to my sister about it and since I was a preschool teacher we figured I got walking pneumonia.  So I went to the after hours clinic and I was lucky the dr. did a chest xray as I didn't have a fever or any other symptoms that would lead them to believe I had pneumonia.  The next day he called me and said my xray looked odd and that I should get a further test done but that it could just have been a bad imaging situation.  I had a catscan a week later - and my life changed forever at that moment.  I had an emergency surgery 6 weeks later due to a possible leak - but I hadn't even been put on heart meds or anything at that point - so what I was experiencing could have also included anxiety but the catscan in the emergency room showed a possible leak - so they couldn't send me home.  Due to the location of that leak, they had to remove 2 of my larger left ribs to get to it (that was excrutiating) but it got tolerable over the next year.  I got almost 7 years extra after that surgery before the one I had this summer.

Alright that was a long way to get to what I'm going to say next, but my doctor said the reason for my cough could have been pressure from my aneurysm on a nerve in my chest that made me have to cough.  So it is possible that your husband's aneurysm is pressing on a nerve that is giving him that sensation in his leg.

I know i

Comment by Sharon Masterman on October 1, 2011 at 19:03

He hasn't had surgery; at the moment he is "medically managed". This is all so scary Cheryl. You are one strong ladyxxxx

 

Comment by Cheryl Kerber on October 1, 2011 at 15:06

I had my 2nd surgery on 7/7 of this year - so i'm going on 12 weeks post surgery - they replaced my aorta from my sternum down to just before it splits to my legs.  I still have issues with my legs which my doctor is telling me will subside as I continue to heal.

For me, when I stand up from sitting or from bending over (like when I hook my dogs up on their leashes) I will get a burning/tickling sensation down from my tailbone into both of my legs and it makes them wobble/shake a bit.  So I just stand and wait for it to pass for a few seconds and then I can walk again.  I've tried to explain to my doctor, but they feel it's still inflammation from the surgery maybe pressing on the sciatic nerve.

I don't know where your husbands incision runs, but there are alot of nerves and muscles and tissues that get severed during surgery and even though we "look" healed on the outside and we start to get more antsy and mentally are farther ahead, our bodies let us know not to over due it.  Walking is the best remedy still, but listen to the hip/thigh pain and either try a different route (maybe a flatter surface) or do a little stretching before hand and after and don't push it - each day will feel different anyway.  There will be days you can go farther and then the next day you will feel like you can't even walk to the door.

I just started trying our treadmill and I tried going 30 minutes at a really slow rate, but it was still too much for my hip joints so I do 20 minutes and that seems to be fine.

As to whether it is normal or not -- for me I have it too (and my doctor continues to tell me to just give it time that we have undergone an extreme surgery not just the physical incision that we see, but all that was done inside that we can't see including scar tissue) and I'm 12 weeks post surgery so most likely due to inflammation on the inside.  It's frustrating as here we try to keep ourselves healthy and get the blood flowing by walking, and we get pay back through physical pain -- bummer.

I'm going to check into physical therapy as it does help to learn the "right" ways of stretching and so forth to rebuild those inner muscles.  I learned this the first time I had surgery 6 years ago -- my incision ran up my left shoulder blade and I got what they call frozen shoulder from it --- I finally started physical therapy 6 months after my surgery and it gave me my life back.  It wasn't easy even though the movements they assign you seem so tiny and you wonder how they are going to give you full range of motion back - but it does.

So consider that - as every little bit of help we can get to get back into our "normalcy" is needed.

Good luck, be patient (I know that is hard to do, especially as we start to feel better).

Keep in touch with any other questions and congrats on first surviving what you did and with managing your BP as I know they stress how important that is!

Take care,

Cher

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