Aortic dissection & aortic aneurysm information support group

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

HI,

 

New to the forum & glad I found it, there's allot out there, but all mainly medical. Trying to find people with similar afflication hasn't been easy.

 

My interest is finding out if anyone has had Dacron replacement(s) fitted, but first a quick overview of my condition.

 

I suffered an aneurysm in 2006 at the age of 46 & had the aortic valve reset, the aneurysm was left to be managed by drugs. I have tried to live a normal life, but I imagine I have overdone it as a recent scan showed the aneurysm has grown by some 2cm.

 

After meeting the thoracic surgeon at the Bromptom I am now due to go in for a Dacron replacement for part of the Aorta, a partial repair which should give an extra 20/30 years i am being told.

 

I would appreciate any advice/assurances from people who may have had Dacron fitted, or any other general advice. Natuarally I am worried and have concerns, but i don't have a choice.

 

Thanks

Harry

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Comment by Cheryl Kerber on April 9, 2011 at 0:35

Try to find out what they are exactly doing with your ribs and which ones will be affected as they removed 2 of mine.  Lucky for you, you are a man and don't have to wear a bra as that is one of the ribs they remove!  I can only wear tie swimsuit tops as I can't have pressure there.

But yes, I will fill you in depending on what you have up.  Find out if they will use a novacaine ball to help with that.  Also, I slept in a chair for about 9 months and still can't sleep flat -- I am propped up on pillows.

I know Kimberlee has had issues too -- I think any time they monkey with the spinal chord, it has residual effects.

Also, one other thing to check is that my surgeon told me that they left the sheathing that surrounds the rib in place hoping it would cut down on some of the pain and in a sense provide some protection of some sort --- without the bone there, not sure what protection they were referring too.  But under meds, not everything makes alot of sense anyway.

No matter what -- you will make it through - pain and all - we humans are amazing and we heal miraculously --- but it takes time.

I also have some clothing suggestions as --- pulling a sweatshirt or shirt over your head will be nearly impossible.  You will want button shirts or zip sweatshirt as lifting your arm will be quite a challenge and painful.  Same with pants --- stick to pull up kind as trying to button or zip will take some time.

If you have the surgery I had, due to the incision being under my left arm and up my back left shoulder blade, they cut through alot of muscle and nerves.  Be willing to do physical therapy as soon as they feel you are ready to gain strength back on that side (mine was about 6 months post surgery when I asked, but if you are up to par quicker and they are comfortable with your aortic area, then go for it when you can).  I can't believe what  difference that made for me getting my life back as normal as possible.  It took a long time to be able to lift even a gallon of milk without shaking and wobbling, and forget pouring control.

I'm sorry this is all sounding so daunting --- I'm 6 years out and can use my arm - it gets tired faster than my right and there is muscle atrophy that I'm now seeking a chiropractor who is doing muscle stimulation on my back shoulder blade to help with that issue --- I'm crossing my fingers it will work as traditional chiropractic they can't do for me.  My back tires quickly when I cook and play the piano --- she tells me it's because of holding my arms out in front of me.

Again, I should stop for now.  I just want you to know that no matter what -- you can beat this and hopefully, they have improved over the last 6 years and it will be less invasive.

Please keep the questions coming --- but do ask your surgeon exactly what they will be doing.  If there could be issues with your kidneys and so forth --- I know they give the risks when you are at the hospital, but just be aware --- don't fear them -- go into it knowing you will survive and won't have all the negative crap!

I need to go watch something funny now.  I feel for everyone on this site, even though I've been in their shoes.  It's not like I wasn't an emotional feeling kind of person before the surgery, but it really has intensified since.  The "why?" is what always hits me.  The "what purpose does it serve?" always enters into my mind.  I've done alot of reading since my surgery -- more into holistic, spiritual (not hard core religion, but I believe in God/Jesus) but have a whole new perspective on our souls journey and learning process while we are here on Earth.  I'm not "cultish" or anything like that, but it has helped me get some of a grasp on the "negative events" we experience here - including such invasive surgery.

What I know, is that everyone on this site, I was supposed to meet via internet - with the common experience of aortic aneurysms and dissections and surgeries for them.  I'm in awe with everyone of you for how far you have come, what you are facing, and the similar journey we have chosen to participate while here.

I hope I didn't scare you off -- with the spiritual talk -- it's just a part of my journey - it doesn't have to be everyones.

Just know we have a connection via our aortas, so please keep in touch.

Cher

Comment by Harry on April 8, 2011 at 21:14

thanks Cheryl & Kimberlee,

 

Cheryl, saw you note on broken ribs on side entry, which i am told is what i will have. Will have to ask loads of questions as it sounds painful. But as you said no hiding behind the bush, need to understand & face whats coming - pre opp tests are on Monday so will ask then.

Comment by Kimberlee Jones on April 8, 2011 at 19:50

No medication has not been reduced. I'm only on Metoprolol and that is simply to keep my BP lower than norm, to prevent growth of aneurysm or any other developing.

 

Keep us updated about the surgery(especially after) also if you have any more questions or concerns please just ask.

 

*hugs*

Kimberleee

Comment by Cheryl Kerber on April 8, 2011 at 18:34

No --- my meds are just to make sure my blood pressure stays low (no prob prior to surgery so it's mainly a preventative measure).  I'm on Lisinopril and Metoprolol ER(beta blocker).

One positive to knowing your surgery date is that you can go into it aware instead of an emergency --- I know that doesn't take away the stress, but your mind/body will know instead of being slammed with shock instead.  It gives you a chance to boost up your strength with eatting right, getting enough rest and so forth, plus ask as many questions you have prior to surgery --- no question is a dumb one and if your doctors actually would come off that way (which I'm sure they wouldn't) at least you'd know to switch or express your concern.

I haven't run across that as of yet --- my surgeon was very confident --- okay bed side manner which is fine since I'd rather have had him skilled in surgery than give me hugs --- the nurses were great for that (not physically of course since I think I would have punched them as it would have hurt too much) - but mentally they all were great at what they were skilled to do.

Please keep in contact as you continue on this path -- even if it's just to vent or state your thoughts!

Cher

Comment by Harry on April 8, 2011 at 17:20

Thanks all!

Got the opp date as May 4th so time to reflect and go in positive with what you have said.

 

Question - have any of you reduced your medication since the Dacron insertion & do you get more mobility?

 

Thanks

Comment by Kimberlee Jones on April 1, 2011 at 1:25
Spoke with my cardiologist today(well his nurse) seems yes I have a Dacron replacement from valve to about mid arch, which funny enough is where my new aneurysm is located, so Richard is correct the Dacron replacement can aneuryse. I'm not sure what Richard means by tubulence, I get the usual dizzy spells and there are moments where it feels like my heart is taking a break and I have to pause what I'm doing for a few moments, it sometimes last a few second sometimes longer but always less than a min. The docs told me that sometimes I just had a extra beat so instead of thub-dub I get a thub-dub-dub, which to me feels like my heart is pausing for a moment. I still get winded and exhausted easily but don't put to much into that, I have other surgeries before and after this one(totally unrelated) So with me I don't know how much of my issues are a result of the dissection, what I have now(the aneurysm, the enlarged aortic root and leaky aortic valve) or due to other surgeries for other medical issues. Take care.

*hugs*
Kimberlee
Comment by Harry on March 31, 2011 at 19:16

Graeme, Richard,

 

thanks for the feedback its re assuring, i will check out the turbulence with the surgeon.

 

Thanks again

H

Comment by Richard Deal on March 31, 2011 at 12:37

hey there harry,

i have a dacron aortic root and arch after my dissection back in 2008. there are a couple of things i think it is important to be aware of, namely:

turbulence (only for aortic root replacement) - because you lose the aortic sinuses when you have your aortic root replaced the blood flow out of the heart is a little more turbulent. this sometimes causes some very strange sensations, not often, but once in a while (i think i have an 'episode' every 6 or so weeks). you will most likely be interrupted in whatever you are doing, and may need to sit down and shoot the breeze for a while until it goes away - nothing particularly major!

aneurysm - this scared the sh*t out of me when i initially read it, but dacron can also aneuryse. there isn't much you can do against this except get yourself checked out at least once a year, or by unusual pains...

the beauty of dacron, though, is that it allows you to lead a relatively normal life and doesn't restrict you in terms of activity. your own tissue grows over the dacron, and after about 12 months you are basically as good as new...

like everyone else has said - you most probably haven't overdone it, an aneurysm's whole goal in life is to get bigger regardless of how well you take care of yourself.

hope that this helps!

take care,

r

Comment by Harry on March 31, 2011 at 11:07

Thanks Cheryl & Kimberlee,

 

Your words are very re assuring & welcome!

Its funny when i had my first opp it was rush job, do or die, & i hardly had anytime to dwell on the event only post surgery.

Knowing i have to have the second opp seems more dawnting as i have time to dwell. Work has been fine & i am signed off & also seeing a counsellor to try & get my thoughts in order and have a positive mental attitude pre opp.

This time around telling family & friends seems harder, almost putting a burden on them. Planning to tell them a week before i go in & my poor old mum will be worried sick.

Waiting for a date is hardest, at least i can then plan ahead. I will take you advice on questions & compile a list for the surgeon.

Thanks again, its heart warming to know there are other fellow human beings who can understand how we feel.

Harry x

Comment by Graeme on March 31, 2011 at 11:04

Hi Harry..

 

I had the works ... An 'all you can eat whopper burger' back in 2003. Type A ascending and descending Aortic Dissection which necessitated replacing my aorta from the aortic root to past the aortic arch with the aortic arch excised from the trashed aorta and resewn into the new dacron aorta. That will be 8 years ago on the 23rd April next month.. and its still looking very good - my last check in November showed everything good as gold (touch wood!) and frankly I don't stop to think too much about it all these days...I am still an over achiever and run around a lot .. (or walk fast!) travel a lot, and live life at a fairly fast(ish!) pace.. so far so good!

As Cheryl said technology is awesome these days and it really works for me as i also have a titanium aortic mechanical heart valve which frankly sometimes drives me spare with its tick. click. thump. (Thank goodness it does make a noise - so it's a real love/hate relationship!) As Cherly said its going to be the op recovery time that will slow you down.. it seems to affect different people in different ways and timelines but it took me 6 months ot recover physically and get back to some sort of routine - and a while longer to get my head around what had happened to me - but that's thats the shock of an out of the blue emergency AD... none saw it coming - least of all me...!!

 

So in summary - Dacron aorta - go for it. Just be prepared for your recovery time... and if you prepare for it well it will pass quite quickly...

 

cheers

 

Graeme 

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