What would you do?

[RangeRover2]

It's been two years since I've had my Mechanical Valve Replacement for Mitral Stenosis which was induced from my Mitral Valve Repair w/ annuloplasty ring which was ultimately too tight causing severe stenosis and pulmonary hypertension. Since my MVR it's been nothing but problems - took 6mos to get in target having to take an obscene amount of Coumadin, 65mg to do so. MVP w/ severe regurgitation prompted the initial repair that failed. I was also plagued with many neurological symptoms which finally led to the following diagnosis - Chiari Malformation (a severe neurological disease where your brain is too big for your skull and as a result there is major brain and brainstem compression and the cerebral tonsils herniate down into the spinal column, causing any and every symptom you can imagine. This was also the cause of my malignant hypertension I suffered from for six years which wrecked havoc on my heart valves. Anyway, Chiari usually has a friend whom follows like tethered cord syndrome and EDS. I've had one brain surgery and a spinal surgery for the tethered cord. Prior to all this I had an ICD which needed to be extracted so I could go on to have an MRI that would lead to the suspected dx of CM. While extracting one of my leads my left subclavian vein burst and nothing could be done to save it as it basically disintegrated. A CT surgeon was called in and I was split open again to save my life. They never expected me to make it and my ep said he's never seen a vascular system like mine. This later led to further genetic testing after the Chiari dx which confirmed Vascular EDS. Okay...so here I am taking now 27mg of Coumadin (as body no longer required the same dosage and my severe hypertension vanished as well post decompression surgery "after all it was all in my head." It's often seen in CM patients...it's called the cushing effect.) Needless to say, I'm concerned about having a mechanical valve and taking Coumadin as multiple surgeries are in my future. I want to replace my mechanical valve with a tissue. Is this unreasonable? I welcome any thoughts. Because of the Chiari multiple brain surgeries and spinal surgeries are in my future and I will have to go off my Coumadin. In fact, my last spinal surgery I ended up with two clots.

 

[AZ Don]

Sorry to hear of all your troubles. My niece had surgery for Chiari last year so I know something about it, and it sure has been no picnic for her. I'm not on Coumadin so am not as knowledgeable about it as many on this board, but I should think that the stroke risks during your surgeries could and should be managed by your surgeons. If so, then I would think this should be lower risk than replacing a working valve and possibly facing future surgeries when the tissue valve wears out (you didn't mention your age). I suggest to talk to the Dr's that will be doing the surgeries and also explore what could or should have been done differently when you ended up with two clots.

 

[AgilityDog]

CAN your mech valve be replaced with a tissue valve? possibly. It's been done, but you are very special.
SHOULD it be done, merely to avoid bridging with lovenox in preparation for future surgeries???? That's a whole 'nother question to be discussed with your doctors. Remember, you may wind up on Coumadin in the future for reasons other than your mech valve.

 

[RangeRover2]

Sorry to hear of all your troubles. My niece had surgery for Chiari last year so I know something about it, and it sure has been no picnic for her. I'm not on Coumadin so am not as knowledgeable about it as many on this board, but I should think that the stroke risks during your surgeries could and should be managed by your surgeons. If so, then I would think this should be lower risk than replacing a working valve and possibly facing future surgeries when the tissue valve wears out (you didn't mention your age). I suggest to talk to the Dr's that will be doing the surgeries and also explore what could or should have been done differently when you ended up with two clots.

Thank you for your response. I'm 39, will be 40 soon. It's the vascular EDS that concerns me more and as I've almost lost my life to it already, and at the time I was off the Coumadin. EDS Type IV places one at grave risks of spontaneous eruptions and I am a young mother with an active child. Surgeries are something I've grown use to if you will and although I don't want them I accept them as being part of my future. It seems a surgery is safer as its in a controlled environment. I don't know? Much to contemplate here. I really don't want to take this much Coumadin having these two in curable diseases.

 

[RangeRover2]

Yes, it could. This is the question I have before me. And as for bridging my neurosurgeon will not allow Lovenox for 4 weeks leaving unprotected. Too risky. And I've already experienced two clots thus far but far better than brain bleed which is a huge risk with this operation. List a friend already to it. And I am especially at risk with the vascular EDS. I think changing the valve out may be the better way to go. Meeting with cardiologist soon to discuss. ��

 

[neil]

so sorry to hear all the trouble your having, for my pennies worth listen to what your cardiologist etc have to say, they are the experts in this field, forums offer good advice and opinions but in cases like this you must listen to what the experts say, good luck and am sure it will all work out for you,

 

[Jkm7]

I'm so sorry to hear all you have experienced and what may be ahead for you but you seem a strong woman and able to handle what comes your way. You are a survivor and that certainly is a good thing.

When you gave your coumadin dosage, I was confused if you are saying that is the dosage per day or per week? Per day, 35 mg is a very high dose but per week, not so.

As to tissue vs mechanical valve for you....... I just don't know what to say. You are such a special case you likely would do best to discuss this with your medical professionals. We have definitely heard of people going from having a mechanical valve to a tissue but I don't know if that is always possible, sometimes possible, a good idea or not>

Sending you all Best Wishes.

 

[RangeRover2]

Yes, that dosage is per day! Prior to my decompression surgery it was 65mg per day! Swear to GOD. After, I've been between 25-35mg per day. Had all testing done. Thought I was warafin resistant but eventually hit target after 6 mos. I've just had bad luck and I wish I just had a tissue at this point.

 

[AZ Don]

It sounds like you are on the right track, considering your options and talking with your Dr's. You mention that your neurosurgeon will not allow Lovenox for 4 weeks. He/She must be aware of the risks this poses to you. What does he/she suggest then? If there is no alternative then a question for your cardiologist is what are the risks to you of going unprotected those 4 weeks, and x weeks for other needed surgeries, vs. the risks of a 2nd heart operation to switch the valves. With a tissue valve you will also have the risks of another surgery or two when they wear out, as well as the risk that you will require Coumadin in any case. I've seen that something like a 1/3 of tissue valve recipients end up on Coumadin for other problems, though the average patient age is probably much older than you.

For what it's worth, the leading Heart Hospital, Cleveland Clinic seems to promote tissue valves for patients of virtually any age. Apparently they must think the benefits of the tissue valve outweigh the risks of repeat surgeries - which they consider to be rather low.

 

[RangeRover2]

Thank you to ALL for your thoughts on this. My cardiologist was/is very concerned about the previous two surgeries and complete lack of anticoagulation for 4 weeks but could do nothing as this was/is my neurosurgeons demands. Great concerns of bleeding with neurosurgery. As I mentioned, I just lost a fellow Chiarian whom I just met to brain bleed and she had none of the issues I do and wasn't on blood thinners. My first surgery I lucked out but my second I ended up with two clots - one in my branchial artery which they were not concerned about as I no longer have a left subclavian vein, it being removed due to bursting from lead extraction. The other was on my valve itself. And as I said, many more surgeries will be needed for this condition as surgeries are temporary to relieve symptoms. My tethered cord has already re-tethered as a result of my connective tissue disorder. And as I mentioned VEDS leaves me vulnerable to spontaneous eruptions and being a young mom concerns me greatly, especially on Coumadin. I know they say the dose doesn't matter but right now I'm below target at 30mg per day. ��