Aortic dissection & aortic aneurysm information support group

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

I had surgery for dissecting ascending and descending aorta in Italy in April. Now its November in England.My bad leg gets cold and stays cold-is this the beta blocker atenolol? I'm working away at it but my walking although still very slowly improving is still  far from what I'd wish-anyone with experience of such neurological damage? I can't find anything relevant to me on this site but it seems to require computer skills far ahead of mine-what for example is a twitter feed? And what do I do with this now I've written it? Geoffrey..............

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Hey Geoff..

you are a star.. (!) you have written your first discussion on the forum and posted it just fine... i have now fed it onto our twitter page and also onto our facebook page.. well done! Funnily enough as to the cold - i guess i just thought it was always me being an Aussie who hates cold and thus hates the English winter..and yes I am cold as well. but the weather has been bloody awful and really cold here in Kent especially today... I also got away relatively unscathed compared to a lot of others with my dissction.. my story is here.. apart from being a train wreck i had no nerve or kidney damage..i was lucky (??) in that regard... but now you and a lot of other people over on our sister site at www.mechanicalheartvalve.co.uk are complaining about the cold and beta blockers.. might go on a hunt to see whats online about the correlation....! Anyway stay well - and keep walking..my dog is my best friend and gets me out most days on a 2-3 mile walk... and it really makes a difference to me!


stay well

GraemeA
Hi Geoffrey,
I dissected in June 2006. Am still dissected ascending and descending. I'm on Atenolol and ace inhibitors and the cold has driven me crazy the last couple of years, and no amount of wrapping up or moving around eases it for long.
I have no idea if this is normal as my Dr's have no idea what is normal either and don't seem to want to discuss very much.
I'd like to hear from more people about this. I've had a bad right leg since dissection, although my scans look clear after my iliacs, but ,apparently, it's 'groin injury'. I lost my left renal artery and kidney and have had pain in the left side / back since dissection, but no-one seems to know why or appears to care very much as everything appears ok on CT scans and there is little they can do anyway.
Congratulations on your obviously improving computer skills!
All the best
Allie
Dear Allie, It must be the atenolol mustn't it? I've been out today and I've had to go to bed for an hour and take a hot bath to unfreeze the foot of my bad leg. I dissected on April 23rd on holiday in Italy and had open heart surgery for 12 hours 5 days later. When you say you are still dissected do you mean that you haven't had surgery? And your bad leg- like mine on the right- can you walk? Does it improve over time? The cause in my case is interrupted blood flow to the lower spine when I collapsed, and consequential neurological damage. This I still hope will improve further ( I am down to one crutch in the street, and no crutch in the house) but after 6 months I am beginning to panic about this. yours, geoffrey.
Hi Geoffrey,
I had emergency surgery in June 2006 but mine was only about 9hrs but they had an awful time stopping the bleeding. They did as much as they could at the time to get me into ITU. I am dissected from the graft, which extends from just above the sino-tubular junction to just below the aortic arch, all the way down to both common iliac arteries (legs) and from the graft upwards into my brachiocephalic and left subclavian arteries. Luckily my valve was able to be re-suspended.
I had a small operation a couple of years ago to remove three of the sternal wires which were causing me pain but nothing else since. My leg aches but apart from an intermittant limp (depending on pain) I'm walking ok. I have a walking stick for when I'm not so good. Don't panic about anything Geoffrey. There are so many things that will feel different and react differently. You are still healing. It does take time. Keep talking to people on this site. Everyone has different experiences but we've all been very scared at times, believe me.
Kindest regards
Allie
Allie, You are so much more aware of your anatomy than I am of mine. My problem was that I didn't speak Italian! My doctor explained only today that the long scar to my ankle was some sort of graft for the work to the aorta! My right foot is so cold today despite 3 pairs of socks. I think I am going to imagine myself in the High Himalaya again and buy RAB modular boots and expedition slippers as per their website ......geoffrey

Hi Geoffrey

 

The scar is probably from a bypass graft for one of your coronary arteries.  My surgeon did the same to make sure he could restart my heart.  It wasn't (in retrospect) necessary but was more a precautionary measure.

 

Charles

I thought it was just me but I really feel the cold since my dissection (end of March). Have had to invest in new fleeces, warm coat and vests. Can recomend Helly Hansen base layers. Heating boiler has packed up which does not help.
Thanks Andrew: Its my legs that feel the cold, not my torso....We are dissection contemporaries, i wonder how we compare? For me, neurological damage, walking much affected, very slow improvement, panics about all this..... yours, Geoffrey.

Hi Drs seem to think I am making a good recovery but I was hoping to be further on by now. I am using the hospital gym for rehab and walking for exercise but still find I get very tired quickly. Can make effort for things like going to family parties  but am then tired for days afterwards. BP now well controlled but could be tablets that are part of problem. Luckily have good GP who has talked to consultant and is experimenting with different tablets but no improvement yet. Have been off sick since collapse but am hoping to try a limited return to work in Jan.

Hi Andrew, I had lunch out with a study group two days ago and likewise finished up exhausted. Here in London there seems to be no access to a gym in a hospital for rehab except privately and expensively-where are you? I wish I could walk for exercise like you- i go very slowly on crutches and am disappointed this hasn't done better. Perhaps you dissected one end only? I was top and bottom, 12 hours surgery 5 days after collapse...geoffrey

Hi Sorry for delay in reply  been away prior to Christmas, then Christmas etc. Hope you had a good one and a better new year.

I am in Salisbury and have a GP referal to the local Hospital gym. It costs about £17 per month for unlimited use of the gym, inital assesment with trainer to work out a fitness programme cost about £10 so very reasonable. Hospital car parking is main expense! Also some nice walks around here by river or past cathedral or just into town for coffee so very lucky. Have re-started walking after ice and snow have gone, very treacherous locally.

I had a type A dissection and five hours of surgery with a tube graft also large pericardial effusion. Pretty lucky reallly no leg involvement or graft from other areas.  Chest healed well but still aches. Main problem is tiredness, dizzyness, short of breath etc. Also starting to worry about work and finances.

Don't push  yourself too hard. Everyone's recovery is different, simply from the fact our bodies heal differently. I really don't like giving advice to recovery and time because I had a c-section the day before my surgery, so my recovery time may be off set by this. I do believe the recovery also depends on how bad the dissection was, things such as length, was the valve repair/replaced, what all damage had to be repaired. My best advice is don't give up and don't be frustrated if you are taking longer to heal than others on here. Your body is doing it's job, also start off small a short walk around the block....again don't push your body just do what you can and try to do a little more each time. I'm also in the same boat with the feeling the cold issue, I had a tumor removed from my upper c-spine 10yrs ago, so I had prior nerve damage in my extremities long before my surgery. Wish I could contribute more. Good luck and keep your chin up.

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