5 months after aortic dissection repair

[Joanna66]

Hi

I had an emergency repair of a type A aortic dissection in November '21 after being blue lighted up to Kings.

I am a 66 year old female and had no inkling that there was anything wrong with my heart before this, and had put any symptoms like palpitations and dizzy spells down to extreme stress after having fled domestic abuse earlier in the year.

My surgery apparently went well and I was told I would "be back to my normal lifestyle within 3 months" - although they did tell me a few days later that there is some damage to the rest of my aorta which will be monitored through scans.

I have only had one phone call with Kings since discharge and this was not very helpful as I am certainly not feeling much better now than when I left hospital.

I am on fairly low doses of Ramipril and Bisoprolol (1.25mgs each) as well as daily low dose aspirin and a fairly high dose of ferrous fumarate as my GP said I am anaemic after surgery.

I still suffer from profound fatigue, but more debilitating than this is a cold numbness from my chest down - but much worse on the right hand side of my body and down my right leg.

It's similar to the feeling when you have slept on your arm and it doesn't feel like your limb anymore - cold, numb and with pins and needle type sensations. This gets worse in the daytime so I associated it with the Bisoprolol as I take this in the morning but my GP says I am on too low a dose to cause this.

I am beginning to wonder about some sort of neuropathic damage, possibly caused during my op.

Is there anyone out there that has experienced something similar, although my GP has tried to help, I am feeling so frustrated at my lack of progress.

[Cliff_G]

Hi Joanna,

Welcome to the club no-one wants to be a member of!

The patient association and charity for AD is aorticdissectionawareness.org . I'm their Scotland Rep, as it happens, and also a type A survivor like you. My recovery has also gone slower than I would have liked. Your experiences are all common, but it is true some GPs aren't fully up to speed on what is a rare condition.

This BHF forum doesn't have many ADers on it but we have over 700 on our Facebook group - see the links on our site - and can helpmyou a lot. Do join (the association itself and the Facebook group are separate sign-ups, for now, but you can do both), but if you don't have Facebook, do come back here and I and a few others will be able to help.

[Joanna66 in reply to Cliff_G]

Thank you Cliff - I have to admit that I thought that was the group I had joined!! Will try again.

[Ymail65 in reply to Joanna66]

Hi Joanna I had keyhole surgery to repair a valve they went in through Brest and groinMy thought is still numb after four years

I can pinch it and hardly feel

Also the muscles have gone so I can’t tone up

[ADsurvivor2003 in reply to Joanna66]

Hi Joanna, I'm Dan, a survivor of aortic dissection since 2003. I'm also the founder and admin of the group that Cliff directed you to. May I just clarify that your surname begins with the letter B? reason for asking is that I can see a request to join but no other details are showing in the question section that you will have filled out when requesting to join.

[Joanna66 in reply to ADsurvivor2003]

Hi - yes my surname does begin with B.J will revisit the site later today - I have obviously missed something!

Thank you for getting back to me.

[ADsurvivor2003 in reply to Joanna66]

Thank you for the confirmation of name Joanna, I've now personally approved your request and put a customary welcome post up for you as an introduction. All the very best for a good day

[Cmc87]

Hi joanna, this happened to my mum 3 weeks ago. I'm also trying to join the above group. The surgery and recovery seem to be going well but there was damage to the brain which were awaiting for information on. They haven't managed to get her to wake up without a seizure. She's on 4 different anti epilepsy medication which are not helping. She had an MRI a few days ago but we have to wait until tomorrow for results.

[Joanna66 in reply to Cmc87]

HiI am so sorry to not have replied and even more sorry to hear about your Mum. I think you might have managed to join the Aortic dissection buddies group as I think I recognised the details of your post on there.

Having read so many of the survivor stories on the group website, it is clear that so many survivors have had a difficult journey after emergency surgery but have made it through and out the other side. I got very little information from the hospital and have learnt so much from the group website.

Wishing you, your family and especially your Mum all the very best.