Comments on: “Aortic Stenosis… The Neglected Child” By Dr. Giovanni Ciuffo

By: John Castracani

John Castracani — Fri, 11 Mar 2011 07:06:58 +0000

After learning this past week after being in the hospital for phenomena and the doctors finding that my 4 year old aorta valve replacement is now narrowing fast from last November until now. I have so many doctors that are involved in this it is beginning to be a complication of one doctors opinion vs another. I have lymphoma and take steriods 40 mg per day to keep my body from eating my red blood cells. That said I also have other conditions as high blood pressure, CODP with risk of phenomena which I have had three times. I am getting frustrated for it seems that my hemotloigist wants to do a proceedure that is in IV form for 4 weeks and my pulmonary doctor wants me to wait until I am fully recovered from the phenomena , which I do agree, and then comes my gastrologist that is concerned with my hernia so I am in a wirlwind with doctors that are telling me nothing but fighting between themselves! I am concerned that my valve is in rapid deterioration and will need replacement but I am being kept in the dark with any and all proceedures while these doctors fight over me. I know I have to heal from being in the hospital for the breathing and cannot have an operation while being this weak. I also know that once I have this infusion IV with the hemotoligist is will take months for results if any to be seen. Now my cardiologist is just sitting back and letting everyone take over and saying that we have to do more test which I agree but in his words not mine this is a problem and we need do something but no rush?? I am just trying to get back on a road to recovery and without the valve replacement again this will not happen for they are just treating me with oxygen 24/7 3 liters continuous. I need a strong doctor which is not my GP to take charge and coordinate my health with these doctors and make decisions on my behalf and he is not doing this and to change a GP in midstream with my conditions will be suicide for me. What would you suggest on how to go about getting my condition under control and having this operation? I know what I want to do but that does not matter and I am at a point in my life that I am going to blow up at these doctors and tell all of them to go to hell but then where will I be? The fustration of being the patient and being on the outside of all these decisions is driving me crazy and I have four doctors perscribing medicine that they should not be and they have made mistakes on dosage with medicine like my steriod from my GP to take 80 mg a day which is way to much and I caught that! I need to get everyone in the same direction which is MY health and well being. Any suggestions on how I can go about this without blowing up at all the doctors at once? The final outcome that I want is to have this second operation of the heart valve replacement and be healing at home with some hope of leading a normal life for the next 10 to 12 years which will put me in my 70′s. Please let me know your feelings on how to go about this without everyone pushing me aside from any decisions.

Thank you

By: Jack Castracani

Jack Castracani — Tue, 08 Mar 2011 14:29:45 +0000

Dr. Ciuffo

Would this prceedure work on someone that has already had a valve replacement? This is where I am right now.

I have just left the hospital from pneumonia and while in the hospital I had an ultra sound on my heart which I had a valve replacement in late December of 2006. I learned in the hospital that my valve was closing and was placed on 24/7 3 liters of oxygen continuous. I just had my ultra sound from my cardiologist only 5 month previous to this and everything was fine and now to find that it is failing I was shocked to say the least. I also suffer from Lymphoma from having a 9.2 lb spleen taken out back in October of 2009. I have been on Prednizone (Steriod) since my spleen was taken out due to my body eating my red blood cells. I am just wondering if the Steriods had anything to do with my valve going bad and needing replacement. I am also alarmed at another operation for with my condition my platelets crash if I am off the Prednizone so I have to have the Steriods to produce them. My question is with my condition I would have to have all the medical treatment that I am getting now even after another valve replacement, but will they do another operation on me with my condition? I have to evaluate the situation with my doctors and find out what kind of time frame I have before this gets worse. I know if the last 5 months before I had this problem I was short of breath but I am on a pain management program with a 50 MCG Fentenyal patch and 4 mgs 6 times a day for break through pain of hydromorphone. The steriods have increased my weight by over 100 lbs not to mention that it makes my sugar levels go crazy so I take a nightly insulin shot to offset the steriod. I have now a pig valve but seeing this would be my 5th major operation and I am going to be 62 I cannot see myself doing this a third time if I get the chance to have another valve replacement. With all the medication I take I do not know if I would be able to use the coumadin with a mechanical valve. Any suggestions would be greatly appreciated for I am the deciding factor in this operation. I am so glad that I have found this forum for I know that I am not alone wth something that I knew nothing about. Good luck to all in this forum with any and all operations.

By: diane

diane — Wed, 10 Nov 2010 16:57:45 +0000

My cardiologist neglected to tell me that she recommended a aortic valve replacement. I found out after I fainted@ a company picnic and was rushed to the hospital. Hard to believe she sent a ltr to my GP and recommened another test and valve replacement but didn’t tell me. To make matters worse I had to have back surgery 2 months after the diagnosis of severe aoetic stenosis and my GP signed off on a pre-op knowing I had this heart condition. Guess I was lucky twice.

By: Dr. Ciuffo

Dr. Ciuffo — Fri, 23 Apr 2010 19:23:17 +0000

Dear Cleat,
Start by telling your doctors that you want a minimally invasive aortic valve replacement. Use the information and pictures in my post to show them you know exactly what you want. A minithoracotomy approach like the one you see in those pictures is the best option because it does not cut any bone, it causes minimal bleeding and pain, it gives excellent cosmetic results and a quick recovery. In expert hands this operation can be carried out in over 90% of the cases. If they do not have the necessary expertise to perform this type of surgery, don’t be shy about it and consider going out of town and consulting a Minimally Invasive Heart Surgery Center. I am personally seeing an increasing number of out of state patients who travel to our center because they do not want to settle for any other type of surgery. After all it is your heart, your body and your life we are talking about. It is worth some informed shopping

By: cleat

cleat — Wed, 03 Mar 2010 22:03:12 +0000

dr. ciuffo, i am a 53 yr old male who will be undergoing aortic valve replacement in may. i want to have the minimally invasive surgery that was mentioned in adams heart blog. how do i go about finding a surgeon in my area who can perform that surgery. thanks in advance for your help.

By: Dr. Ciuffo

Dr. Ciuffo — Wed, 10 Feb 2010 02:51:39 +0000

Donna,

Here is a link about minimally invasive aortic valve surgery in Ireland:

http://www.imn.ie/index.php/current-issue/news/1935-minimally-invasive-cardiac-surgery-conducted-in-ireland

I hope that can help

By: donna coogan

donna coogan — Tue, 09 Feb 2010 09:12:27 +0000

i am a 52 year old woman from ireland who will be having aortic valve replacement in a couple of months..I WISH i could have it dont the non invasive way..amazing..great work ..heres to the future ways

By: Dr. Ciuffo

Dr. Ciuffo — Fri, 05 Feb 2010 22:44:30 +0000

Chuck: In a patient your age, a biological valve tends to last much longer than in a 30 or 40 year old. Most heart valve surgeons would probably lean towards this choice for you rather than a mechanical valve and coumadin therapy. A reoperation 10-15 years later (if at all necessary) to replace a biological valve in an otherwise healthy 75-80 year-old man carries only a small increase in risk compared to the first operation. A minimally invasive approach through a mini thoracotomy the first time around can actually decrease the surgical risk in the future by offering the surgeon more options to expose the heart through relatively scar-free areas during the redo operation(i.e.: redo thoracotomy, median sternotomy, ministernotomy). In essence, you could have either type of valve replaced through a minithoracotomy and you do not need to be concerned about any additional redo risks related to this approach.

Neil: I am not sure I understand why your valve could not be seated through a minimally invasive approach but you certainly had a good surgeon and a great outcome. As far as pain is concerned, the advantage of a minithoracotomy is that you can easily numb up that portion of the chest wall with local anesthesia and wake up right after surgery virtually pain-free. It would then feel mildly sore for a few days when the local anesthesia wears out

By: neil hitz

neil hitz — Thu, 04 Feb 2010 02:59:02 +0000

Although absolutely no symptoms, had surgery for AS on Jan4. Valve was closed to 0.8. The plan was for Min Invasive ( as shown above), but my Dr wasn’t able to get valve to seat as he wanted, so did a full sternotomy and was also able to place a larger valve (St Jude #23 Epic Supra-Annular tissue valve). The point is that prior to sugery, I had differing medical opinions as to the pain levels for the 2 types of surgery. One week after surgery I went home & never took another pain med. Conclusion, ( for me anyway) with the right surgeon either procedure can be pain free.

By: Chuck Bishop

Chuck Bishop — Thu, 04 Feb 2010 02:56:12 +0000

Dr. Ciuffo –
I am 64 and pretty healthy except for a bicuspid arotic valve. My cardiologist says it is time to get this fixed. I have no symptoms, but I understand that futher waiting risks serious heart damage. My problem is in picking a mechanical or tissue valve. Given the minimally invasive techniques you discuss, is having another operation at age 75 all that risky? Or do I go with a mechanical valve and put up with clicking and cumadin for the rest of my life?