BadMad returns but facing 3rd OHS

[badmad]

I used to post here under the same Moniker BadMad (live in North of Ireland) some 15 years ago when I was waiting on my second aortic valve replacement surgery. This board was of tremendous support to me at that time. I wonder are there many posters still around from that time?

If any of you were around then you might remember that my surgery was filmed as part of a BBC documentary called ‘Super Docs’ screened the the UK & Ireland in 2009. I think it’s still up on YouTube.

I had my first BAV replacement surgery in 2001 at age 23. I went for a homograph tissue so I could return to contact sport competitively but by 2007 it appeared the valve was failing and my ascending aorta was moderately dilated. So later that year I was scheduled for a second surgery to replace the valve with a mechanical one and the replacement of my aortic root in some form. I had discussed at length with the surgeon and the plan was either to do a Bentall or a graft on the area affected. In the end he replaced the valve but decided during the operation to go with the more conservative approach and leave the aorta alone - long story but it was something that concerned me and I always felt that over time it would dilate further and a third surgery would be required. So after almost 14 years, at 43 years old, I feel I am approaching that point with the aorta 53mm at the sinus of valvula and over the last year it has dilated by 3mm & 4mm at a couple of different points. All scans have been Echo’s compared v MRI each time.

So I am scheduled for a cardiac gated CT scan in July which will probably be the first steps to a third surgery. I should say that
a relatively young, fit, active person I have had zero issues with warfarin during those 14 years and my valve is still working perfectly.

I suppose I was wondering if any of you had similar stories of being faced with a third surgery and the risks? During my second surgery I had a bleed as my the surgeon cut into the right atrium due to the scar tissue. Thankfully it was brought under control quickly but I understand the scar tissue from previous ops makes surgery trickier.

I wondered if anyone has ever needed surgery on their aorta in the presence of having a mechanical balance that is working fine. And in that case do they leave the valve as it is? Thanks for reading my story

 

[vitdoc]

Almost exact same story. 1977 age 29 tissue valve failed by 1983 replaced with St. Jude and warfarin forward 2006 aortic aneurysm 6.5 cm third surgery with new St.Jude and ascending aorta. Yes the surgeries get tougher.
Developed 3 rd degree heart block and became pacemaker dependent.
Still very active. I think that the valve and aorta are usually but not always replaced together when a mechanical valve is present because the graft and valve come as a connected prosthesis. Easier to connect without leakage.
Good luck. Find an experienced aortic surgeon.

 

[badmad]

Thanks for your reply Vitdoc. Great to hear your story and even better to know you are doing well after all that. A surgeon with experience in operating on the aortic root and re-dos is definitely a must

 

[pellicle]

Hi

I wondered if anyone has ever needed surgery on their aorta in the presence of having a mechanical balance that is working fine. And in that case do they leave the valve as it is?

I'm just a patient not a Dr, but my observation is (based on here) that it can go either way. My understanding is that it will depend on things like:

• the complexity of the Aortic Arch surgery required
• the levels of scar tissue on the heart where the last surgeries occured

the aims are to reduce surgical complexity and time on the pump as well as minimise risk to you (possible AV Node damage). I anticipate they'll do a lot of pre-surgical medical imaging to see where stuff is buried.

My surgical driver at OHS #3 was aneurysm, I had a complex arch anatomy and of course my valve at that time was a homograft which was not going to last many more years, so they nipped that out too. However the understanding I got from my surgeon was that they don't want to spend time stitching the other end onto a gummy (scar tissue) valve bundle when they can put in a fresh valve and fully seat that and have a pre-attached and safe aortic riser (as many are available that way now).
Eg

your age is missing from your Bio but my own age at #3 was 48. I've been running on that valve / graft since Nov 2011

I'm still reasonably fit and active (although my fitness dropped with a 2 year return stint of IT work) and behave in a normal adult way



so ... hopefully that's a starter


Best Wishes

 

[Chuck C]

Welcome back!
I'm relatively new here, having joined a few months ago. Just finished up with a Bentall procedure. It was planned as only a mechanical aortic valve replacement of my BAV. However, my surgeon is very experienced and it was his opinion, once he got things opened up, that my aorta might be subject to aneurism down the road, so he made the call to replace my aortic root and ascending aorta along with my valve, even though my aortic diameter was only 35mm, far smaller than the size at which the guidelines call for replacement.

In the end he replaced the valve but decided during the operation to go with the more conservative approach and leave the aorta alone

After reading your story and so many others, I will say that I am very glad that my surgeon made this decision. I can't help but wonder if there should be a lot more Bentall procedures happening, when presented with a patient with BAV, as so many times the patient needs to return for aorta replacement due to aneurism. Perhaps it could also be said that many valve sparring aorta repairs should also be Bentalls, given how many of those seem to need to return to replace the valve years later.
I am glad that you are back in the community and please keep us posted on each step of your journey towards your third OHS. You sound like you are in good shape and I'm sure that you will do fine.

 

[badmad]

Hi



I'm just a patient not a Dr, but my observation is (based on here) that it can go either way. My understanding is that it will depend on things like:

• the complexity of the Aortic Arch surgery required
• the levels of scar tissue on the heart where the last surgeries occured

the aims are to reduce surgical complexity and time on the pump as well as minimise risk to you (possible AV Node damage). I anticipate they'll do a lot of pre-surgical medical imaging to see where stuff is buried.

My surgical driver at OHS #3 was aneurysm, I had a complex arch anatomy and of course my valve at that time was a homograft which was not going to last many more years, so they nipped that out too. However the understanding I got from my surgeon was that they don't want to spend time stitching the other end onto a gummy (scar tissue) valve bundle when they can put in a fresh valve and fully seat that and have a pre-attached and safe aortic riser (as many are available that way now).
Eg
View attachment 887697

your age is missing from your Bio but my own age at #3 was 48. I've been running on that valve / graft since Nov 2011

I'm still reasonably fit and active (although my fitness dropped with a 2 year return stint of IT work) and behave in a normal adult way



so ... hopefully that's a starter
View attachment 887698

Best Wishes

Thanks for sharing your story Pellicle and great to hear you are doing well after a third OHS. We are close enough in age - I am 43.
All that makes sense - it will be interesting to hear what approach they suggest but the bentall sounds like the most likely.

 

[badmad]

Welcome back!
I'm relatively new here, having joined a few months ago. Just finished up with a Bentall procedure. It was planned as only a mechanical aortic valve replacement of my BAV. However, my surgeon is very experienced and it was his opinion, once he got things opened up, that my aorta might be subject to aneurism down the road, so he made the call to replace my aortic root and ascending aorta along with my valve, even though my aortic diameter was only 35mm, far smaller than the size at which the guidelines call for replacement.

After reading your story and so many others, I will say that I am very glad that my surgeon made this decision. I can't help but wonder if there should be a lot more Bentall procedures happening, when presented with a patient with BAV, as so many times the patient needs to return for aorta replacement due to aneurism. Perhaps it could also be said that many valve sparring aorta repairs should also be Bentalls, given how many of those seem to need to return to replace the valve years later.
I am glad that you are back in the community and please keep us posted on each step of your journey towards your third OHS. You sound like you are in good shape and I'm sure that you will do fine.

 

[badmad]

Hi chuck - thanks for sharing your story and glad to hear your surgeon was pro-active and thinking of further down the line!

Yeah it came as a massive shock to me when the surgeon came onto the ward the next day and told me he decided to leave the aorta alone. He said that he felt the dilatation was happening as a result of the leaking/stenosis of the valve and once that was replaced and Blood Pressure was controlled then further dilatation was unlikely. His further reasoning to take the conservative approach was:

1. The elastic properties of the aorta were in great shape
2. The dilatation was isolated to the ascending aorta
3. Given my age profile he felt that the risk of infection with a graft/bentall was greater v likelyhood of needing another surgery
4. In the unlikely event of needing surgery on it, it would be in a very long time and surgical advances.

In my mind, I have often wondered did the bleed at the beginning of my operation play a part in his decision, baring in mind there was a team of television cameras filming him. I should say he was a very experienced surgeon but I still wonder why

 

[pellicle]

We are close enough in age - I am 43.

Err I'm 57, my 3rd OHS was Nov 2011

I wish you all the best with your next surgery. I got a few bumps, but they're in the rear view mirror now.

 

[badmad]

oops! I read that wrong P

I'm not sure if it will play outside the UK but here is the link to the Youtube documentary on my second surgery in 2007. Mine is in the second half of the program

 

[Superman]

Sounds like some misconceptions of that time. Seems we’re understanding better that it’s a connective tissue disorder related to BAV. So hopefully more surgeons will take the one and done approach.

Myself, I’ve only had two surgeries. A rookie in this thread. But I’m okay with that. Same basic story though. Went mechanical in 1990. Replaced with bentall procedure in 2009. Resized the mechanical and went with a one piece like pellicle shows above. That was over 11 years ago now.

I’m 48 and doing well.

 

[pellicle]

I’m 48 and doing well

I hope it stays that way

 

[badmad]

Sounds like some misconceptions of that time. Seems we’re understanding better that it’s a connective tissue disorder related to BAV. So hopefully more surgeons will take the one and done approach.

Myself, I’ve only had two surgeries. A rookie in this thread. But I’m okay with that. Same basic story though. Went mechanical in 1990. Replaced with bentall procedure in 2009. Resized the mechanical and went with a one piece like pellicle shows above. That was over 11 years ago now.

I’m 48 and doing well.

Thanks for posting your story Superman and great to hear your bentall was a success
Yeah it still baffles me. There were some wise posters on here even back then who mentioned that aortic aneurysms can occur in BAV patients in the absence of valve problems. In other words, the aortic diltation was secondary to the leaking/faulty valve and more to do with the genetics of BAV and how it can present in different people. I guess the medical field has still much to learn about gene mutation.

 

[badmad]

Haven't been on in a while but thought I should give a wee update! Met the surgeon In December 2021 where we discussed potential options for my 3rd OHS.

It took place then on the 31st May this year. When the surgeon went in it was evident that the Aorta was dilated down into the root so a modified Bentall it was - ascending aorta, aortic root and valve all replaced. I got a St. Judes valve conduit. The surgery lasted around 15 hours and was pretty complex but all went well in the end and recovery has been seamless with a full return to all activity.

When I was back for my 3 month review, I was curious to know how long I was on the cardio-pulmonary bypass machine. 376 minutes was the answer so I guess I have lots to be thankful for

 

[ValveAdmin]

Hey, thanks for checking back in and for the update. Glad that your last surgery went well and recovery was seamless.

 

[Lucker]

@badmad
Thanks for the feedback, this kind of feedback makes us awaiting believe that people may be leaving this forum to live their life in the end.