Aortic dissection & aortic aneurysm information support group

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

Hi

I have just returned from an appointment with my vascular consultant and I have been informed that I need two more operations, one to fix the tear in my descending aorta which is torn from the arch to my kidneys the aneurysm measures approx 5cm it has enlarged .2cm in 3 months.  The second one is to fit a stent also I need my sub-clavian artery re plumbed!

Last June I had an emergency operation to fix a type A dissection and I suffered a stroke.

Has anyone any advise?

Linda

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Comment by Linda Hill on April 21, 2012 at 16:23

Hi Harry,

Thank you for your comments, I agree I know what to expect and hopefully it will be elected surgery and not an emergency like last time!

Regarding my blood pressure i have been to see a consultant who has sorted out my tablets; i am now on 5 tablets and it seems that after 11 years my blood pressure is now under control :)

Greg, I walk over a mile a day and eat a low fat, low salt diet as recommended by various Drs.

I will let you know when i have a date for m first operation

thanks again

Linda

Comment by Gregory Smith on April 19, 2012 at 9:01

Linda,

It took over 18 months and several changes of medication to get my BP under control. I am now on Losartan, Nebivilol and Amlodipine, which seem to work much better for people like us than the stuff that is usually prescribed. However, you shouldn't rely solely on meds. I do regular cardio-vascular excercise, changed my diet and took up Tai Chi.

Good luck.

Greg

Comment by Harry on April 6, 2012 at 17:03

Hi Linda,

Cheryl & I had a similar procedure that your about to undergo. I had my aneurysm in 2006 & due to its subsequent expansion had a Dacron implant last year. Like Cheryl they entered through the left rear shoulder, it should take around 8hrs to complete.

The aneurysm also runs down to my kidneys, but I am informed this is manageable through medication, but could be re plumed if required. So far no ill effects, so will just monitor this.

You have been through a similar operation so you should know what to expect. Ask the surgeon about risks & side effects – My vocal chord was damaged but thankfully repaired a few months later, hopefully you will be fine.

You obviously need to get you BP stable & managed, before or after as this is critical to avoid further aneurysm growth & surgery. If you feel you need support or someone to talk to I found counselling helped & should be available through your GP.

I hope things go well!

Rgds

Harry

Comment by Linda Hill on March 28, 2012 at 16:57

Hi Cheryl,

Thanks for you message I agree I dont really have a choice as to whether or not to have the operation I feel that not would be unwise. My children have grown up and are married, I now have a 22 month old grand daughter who is great and I dont want to miss out on her development. 

I have yet to meet the cardiac surgeon but the operation is be preformed at St Georges hospital in London which is the same hospital as before, my care before was good. I will start to write out any questions I think of between now and my appointment. I do have high blood pressure which is not controlled despite being on various medication.I do see a blood pressure consultant so hopefully it will soon be controlled.

Thank you for the information regarding the surgery I just assumed they would re open my previous scar. My First question is now written :)

I dont like putting my family through all this!

Comment by Cheryl Kerber on March 27, 2012 at 21:10

Dec 2004 I had my descending thoracic aorta replaced due to a possible leak (I was 39, 4 kids, and self employed), but the emergency surgery was too extensive to fix the original dissection/aneurysm.  I've been monitored with ctscans every 6 months since then, and this past May, I was informed that surgery was necessary to replace the original section since it had grown to 5.5 or so.  The portions leading into my kidneys were also increasing in size so I couldn't just get a stent put in - they had to replace and reconstruct from the end of my first surgery through my kidneys and so forth.

I know it is scary to think of going through it all again.  To choose to(even though we aren't forced to have the operation, but there isn't really a choice is there?) have surgery makes it even worse.  But going into the 2nd surgery July 2011, at least I was aware of what I was to face and had time to prepare for it.  I don't think we are ever completely prepared for the "after surgery" healing and pain and so forth, but it is doable.

  You survived last June, and are approaching a year, so just believe you are capable of anything!

I live in MN and have quite a few options for who I could have gone to.  I did see two different vascular surgeons, but one told me he(and their doctors) were not equipped to do my surgery - I appreciated his honesty.  I was blessed to find a surgeon who had trained at Mayo clinic and in my area of surgical need.

Do you feel comfortable with the surgeon you are currently seeing?  If not, go for another opinion. 

The hardest part is that once your aneurysm reaches 5 cm - for a woman, that is when they encourage surgery as we just don't know what causes them to grow(i''ve been on meds since the first surgery - and I never had high blood pressure - and they don't know the why for me).  So the fact my aneurysm had grown, and my kidney arteries were enlarging - just pushed the "need" that much faster.

Finding this site was a God send for me - it helped me understand I wasn't alone and that others understood me without really knowing me.

I can't tell you what to do.  I won't say it is easy for me or for my family and friends - but, I just knew I didn't want to have the "ticking time bomb" anymore and the surgeon didn't like the odds.  I asked alot of questions and then had to just "Let Go, Let God" as they say.  It really was out of my control.

All I can suggest is that you ask alot of questions.  Find out the details of what the surgery/ies would entail.  My first surgery runs from under my left breast, under my arm, and up my left back shoulder blade (they also removed 2 major ribs in order to get to the aorta).

The second surgery runs from my left under arm rib area to 2 inches from my mid belly button. The graft they put in I can only assume looks like the Gumby shape.

I have the battle scars for surgery - but I'm alive first and foremost.

Surgeons don't generally like to just cut you open, so if they are concerned, chances are it's necessary.  But again, you have to trust your gut - if you aren't sure, do go seek another opinion.

You can talk to your family and friends, but the decision will still come down to you.

Is it survivable -- yes.  Is it easy - no.  Is it necessary - based on your info - most likely, but I'm only basing off of what I was told this past spring with mine.

Keep asking questions - we are all here for you.  I wish I could just say - nah you don't need the surgeries - but I know better than that.

Keep in touch --- just believe in yourself!

Cher

 

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