Tissue Valves in UK

[Lotti]

From Lotti

From Lotti

My sugical team was under Mr Sosnowski, with a Mr Szostek and Mr Doukas assisting. This team specialise in Tissue valves but I have heard only good things from others with alternative surgeons at this hospital.
I have also just found out that i have a leak!

I will let you know after 5th June what it is that has happened.
Don't want to second guess what may be the cause.

Lotti

 

[Andyrdj]

Sorry to hear that Lotti!

Sorry to hear that Lotti!

Have checked out leakage info on web- apparantly a little leakage is not a problem. But would like to know more. From what I have found risk is similar for all valves, Mech valves being a little higher owing to something to do with the sewing ring.

Another reason why I want the Magna as opposed to the old perimount - it enables optimal sizing of the valve which can minimise the risk.

 

[alyfar]

biological valve

biological valve

Hi Andyrgj,I have just registered onto the site.My 18 year old son was born with tetralogy of fallots and now needs a replacement valve and his heart is significantly leaking.This cannot be done by keyhole surgery.I recieved the letter yesterday to say my son is being transferred to the heart hospital in London as he is too old to remain at Great Ormond Street.He had all fitness tests,mri scan etc... 3 weeks ago,doctor rang last week to say he needs operation as soon as possible even though he is well.They also say in the letter that he will be having a biological valve(human cadaveric tissue) fitted even though the doctor said there was 3 options,mechanical,valve from cow,and the one being offered.I am abit concerned that they say that in the best conditions this valve will last 7-10 years,which means he will have to go through it all again when he is in his late 20s early 30s.We are now waiting for an admission date for surgery which we expect in the next few months.My son has allways had treatment on the NHS and the staff at GOSH are great.It is a pity that the same cannot be said for our dentist of the last 15years.He has just gone private and kicked all nhs patients off his register,not very helpfull!Desperately seeking new nhs dentist with not a lot of luck.Will let you know how we get on with surgery etc,wishing you good luck Aly

 

[alyfar]

biological valve

biological valve

Hi Andyrgj,I have just registered onto the site.My 18 year old son was born with tetralogy of fallots and now needs a replacement valve and his heart is significantly leaking.This cannot be done by keyhole surgery.I recieved the letter yesterday to say my son is being transferred to the heart hospital in London as he is too old to remain at Great Ormond Street.He had all fitness tests,mri scan etc... 3 weeks ago,doctor rang last week to say he needs operation as soon as possible even though he is well.They also say in the letter that he will be having a biological valve(human cadaveric tissue) fitted even though the doctor said there was 3 options,mechanical,valve from cow,and the one being offered.I am abit concerned that they say that in the best conditions this valve will last 7-10 years,which means he will have to go through it all again when he is in his late 20s early 30s.We are now waiting for an admission date for surgery which we expect in the next few months.My son has allways had treatment on the NHS and the staff at GOSH are great.It is a pity that the same cannot be said for our dentist of the last 15years.He has just gone private and kicked all nhs patients off his register,not very helpfull!Desperately seeking new nhs dentist with not a lot of luck.Will let you know how we get on with surgery etc,wishing you good luck Aly

 

[Andyrdj]

Hi Alyfar

Hi Alyfar

Please see attached this graph from the other post. Top is for the old Bovine Pericardial Carpentier Edwards perimount for a variety of ages, bottom is for a variety of valves in 40 year old patients.

The stats are off a webcast from Edwards Lifesciences website, by Dr Delos M Cosgrove

It might be worth taking this graph to show your surgeon, as they could be being a little cautious so as not to get your hopes up. My own repair was quoted as likely to last 10 years, it's lasted nearly 15!

It might be worth considering the new Perimount Magna with ThermaFix (don't know anyone in NHS who's had that) or the Mosaic valve (someone in this post with it, also there's another post with its 10 year follow up).

Or there may be a reason they've picked this specific valve, or perhaps another reason he will need another op soon.

All I can say is read as much of this site as possible, as I often think surgeons don't give people enough info and choice. But you might also be taking a risk. The best of luck to you, whatever happens!

 

[Lynlw]

Hi Andyrgj,I have just registered onto the site.My 18 year old son was born with tetralogy of fallots and now needs a replacement valve and his heart is significantly leaking.This cannot be done by keyhole surgery.I recieved the letter yesterday to say my son is being transferred to the heart hospital in London as he is too old to remain at Great Ormond Street.He had all fitness tests,mri scan etc... 3 weeks ago,doctor rang last week to say he needs operation as soon as possible even though he is well.They also say in the letter that he will be having a biological valve(human cadaveric tissue) fitted even though the doctor said there was 3 options,mechanical,valve from cow,and the one being offered.I am abit concerned that they say that in the best conditions this valve will last 7-10 years,which means he will have to go through it all again when he is in his late 20s early 30s.We are now waiting for an admission date for surgery which we expect in the next few months.My son has allways had treatment on the NHS and the staff at GOSH are great.It is a pity that the same cannot be said for our dentist of the last 15years.He has just gone private and kicked all nhs patients off his register,not very helpfull!Desperately seeking new nhs dentist with not a lot of luck.Will let you know how we get on with surgery etc,wishing you good luck Aly

Welcome, my name is lyn and the patient is also my 18 yo son, Justin. Justin has TGA not TOF and had an operation(rastelli) that involved a conduit from the right ventricle to the pulmonary artery, like many of the TOF people have.
last may Justin had his coduit replaced and got a pulm valve (his first one)
Justin got a tissue (bovine) valve even tho he was young, because his conduit will need replaced in about 10 years anyway, so there was no need to go for a lifetime valve/coumadin if the valve was going to be replaced when the conduit does anway. So my question is (took me long enough didn't it lol) does your son also have a conduit as his right ventricluar outflow tract? IF so that MAY be why the are chosing that particular valve.
our Hopes are (based on talks w/ pediatric cardiologists/surgeon from 4 heart centers ) that when justin needs his next repair, he would be a canidate for the conduit that is being worked on at boston childrens and a few other places where they are growing conduits out of the kids own stem cells in hopes that it would never need replaced and for the smaller kids would grow with them.(you can learn alittle about them at www.miraclehearts.org ) the doctors at CHOP (one of the top ranked hospitals for CHD) really believes this will be offered next time justin needs his replaced.
Lyn www.caringbridge.org/nj/justinw

 

[alyfar]

Hi Lyn,Thanks for taking the time to answer me.I have not heard about a conduit.When my son was born it was just thought he had a small hole in the heart,but by the time he got to 15 months he would kind of faint for a few moments.Our family doctor allways referred to him as her 'blue baby'.At the time we were based in lincolnshire with the army,a heart specialist from GOSH was at the local hospital and we got an emergency apointment with him.He diagnosed TOF and within 6 weeks my son Nathan had OHS.It was felt at the time that they would be better to patch the valve and cut away some of the narrowing.We were always told he would need follow up surgery in his teens.His heart has always leaked,but over the years the hole has got bigger and now the right side of the heart has enlarged to compensate.He has never been energetic and has allways know his limits.Up until Nathan was 18 we were never allowed to see what the doctors wrote about him,but that has now all changed and we have all copies of letters etc that the doctors write.The doctors have decided that my son is not suitable for keyhole surgery,although he is having OHS this time I think they are hoping when the valve needs replaced again that it won't be so invasive and they said technology in heart surgery is moving on all the time and that in 10 years time everything will be different again.I must admit that up until now we have never had so much information thrown at us,I think this is because we are being transferred to a adult hospital and they said Nathan must be more aware of his condition.As it is looking like we won't get the chance to visit the heart hospital in London before Nathan is admitted to surgery,I am finding the internet a great help and it is nice to know you can get support and help from people in a similar position.Hope we speak again soon Aly.

 

[Lynlw]

Hi Lyn,Thanks for taking the time to answer me.I have not heard about a conduit.When my son was born it was just thought he had a small hole in the heart,but by the time he got to 15 months he would kind of faint for a few moments.Our family doctor allways referred to him as her 'blue baby'.At the time we were based in lincolnshire with the army,a heart specialist from GOSH was at the local hospital and we got an emergency apointment with him.He diagnosed TOF and within 6 weeks my son Nathan had OHS.It was felt at the time that they would be better to patch the valve and cut away some of the narrowing.We were always told he would need follow up surgery in his teens.His heart has always leaked,but over the years the hole has got bigger and now the right side of the heart has enlarged to compensate.He has never been energetic and has allways know his limits.Up until Nathan was 18 we were never allowed to see what the doctors wrote about him,but that has now all changed and we have all copies of letters etc that the doctors write.The doctors have decided that my son is not suitable for keyhole surgery,although he is having OHS this time I think they are hoping when the valve needs replaced again that it won't be so invasive and they said technology in heart surgery is moving on all the time and that in 10 years time everything will be different again.I must admit that up until now we have never had so much information thrown at us,I think this is because we are being transferred to a adult hospital and they said Nathan must be more aware of his condition.As it is looking like we won't get the chance to visit the heart hospital in London before Nathan is admitted to surgery,I am finding the internet a great help and it is nice to know you can get support and help from people in a similar position.Hope we speak again soon Aly.

no problem fell fre to email me anytime of if your son has any questions for justin, since he had surgery last year, thot would be ok too.
here is a link to a great book you can read it online it has good descrpitions and diagrams of the different CHds and surgeries, maybe that can help you. I know things make much more sense when i can look at pictures http://www.childrensheartfoundation.org/IMH_pg2.htm

I also belong to the adult w/ chd forum and there are alot of member who were amung the first to have the tof repairs, if you would like the link just email me at [email protected]