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The surgery to repair my aneurysms scares me. If there is a chance that I could correct the problem without having surgery, I would like to give it a try. Thank you for reading this.
You and I are in somewhat similar situations. I'm 6'1", 190 lbs, used to be athletic before my diagnosis, not quite Marfan but some type of milder connective tissue problem, 3.8 cm aortic root, tricuspid aortic valve (we are fortunate that we do not have bicuspids!). Kind of throws a cramp in your style, doesn't it?
I came back from my cardiologist appt 6 months back with some more aortic growth, as usual. I was disappointed and said a prayer to the Lord Jesus Christ - and a day or two later, I got an email from the National Marfan Foundation regarding the losartan studies. Wow, what a direct answer.
I called my doc up and he prescribed me not Losartan but valsartan, which is a similar drug. He put me on a very light dose (80 mg/day), about half of what someone my body size would be taking in Dr. Dietz' study on adolescents this fall.
Fast forward 6 months - I had my follow-up echo last Monday. Thank the Lord - no growth. All my numbers were "identical to last time," according to my cardio. That is unusual because my aorta had been growing up until then. We cranked up the dosage to 160mg/day, which is more in line with what someone my size should be taking. I'm praying that at my next echo, the aorta will have shrunk. Who knows? I'm just happy for now.
I've spoken with other people taking losartan, and they also have stabilized their aortic roots. One lady I know was taking a pretty high dosage (300 mg of Avapro/irbesartan per day, the max you should take for that drug) and her aorta shrunk from 4.2 cm to 3.7 cm over a 6-mo. period.
None of that answers your question directly, but there is indirect, un-official basis for having a lot of hope for these studies. Talk to your cardiologist and see if he or she will prescribe some for you at a *HIGH* dosage. You're almost at the threshold for surgery, so tread carefully. I'll pray you experience the same kind of (seeming) success as me, if not better!
†
Nick
PS - The above does not constitute medical advice; disclaimer disclaimer ad nauseum ad infinitum.
PS - the surgery IS scary, but if done by an experienced surgeon, the success rate is extraordinarily high, and the life expectancy is basically normal. Many of the post-operative deaths you hear about are folks that are already dissecting/rupturing, the elderly, or those already in some sort of bad heart shape. If you're generally healthy and you go to a good surgeon, there is nothing to fear!
Hope the drug works for you. I had a 5.0 cm aneurysm of the ascending aorta, very similar to yours, normal valve, only the ascending aorta, etc. I'm male, 48, 160 lbs, athletic, non-Marfan's. I had surgery in early '04. I was back on my bicycle in 6 weeks, it took about 6 months for me to feel really recovered, and a year before my sleep was back to normal. Today, I ride about 160 miles per week at a fairly high intensity level (I used to race competitively). The only thing I don't do is lift very heavy weights. Otherwise, no problems. I take a low dose (75 mg daily) of metoprolol, a beta blocker. It cuts my aerobic capacity by about 10%, you get used to it.
If you do get to where you need surgery, make certain you go with a highly experienced surgeon who has done hundreds of aortic repairs. Cleveland Clinc has a great reputation. I had my surgery done by Dr. Vincent Gaudiani in California, he's done hundreds of such operations. I had a mini-sternotomy (only 4" near-invisible scar), and was on pump for only 25 minutes. Don't get someone who has only done a few of these!
i'm in the exact same situation as shiddady and nick. I'm 44,, 6', 220 lbs, my aortic root is ~4.3cm and I'm on 80 mg of valsartan. The interesting part was that a year ago my aortic root was measured at 4.8 by echo and I was talking to surgeons.
We did an MRI and it measured 4.2. The echo has about a .2 margin for error. An echo last week measured the aortic root at about 4.3 or 4.4. My point is to get an MRI to baseline it first and then once every year or two just to check it.
I watched it grow .2 about every two years since it '92, it was 3.9 then. Don't worry about about a .1 or .2 change it's not that accurate.
I'm also hoping to see it shrink but who knows. I figure I have 7 to 10 years to see but who knows about that too.
not sure if you'll read this since you posted a year ago.
41 years old.
6' 1"
Went from 200lbs to 280 pounds since dialaiton was found (5 year timeframe).
Was an avid cyclist (competitive) until this happened then I became depressed and quit doing much of anything. No longer depressed and have hired a personal trainer. Down to 260..... worried though because it is mostly weights.
Dilation found by chance about 5 years ago. Valve is fine. Any surgery would spare valve. Remained stable at 4.1 CM measured yearly until last year when it grew to 4.6 (worried because that is the period after beginning weight training). We now measure it every six months, the first of which will be this friday.
In the meantime my doc put me on cozaar 50mg 6 months ago. We shall see what happened because measurment and doc appointment happen at same time this friday. I'm scared to death because my gut says surgery is in my future.
Not here to scare anyone, but my aunts friend just died of this. They told her she did not need surgery and then it ruptured. She was however like 60 something and a big time smoker and drinker. I am sure this played a key factor into hers rupturing. I just wanted to put this out there and I know some will be upset. And I am sorry....
What was the size of your Aunts friends dilation and was it on the aortic root.....
ie do you really know enough about this persons condition to know we are talking apples to apples? I know very little about my Aunts friends medical conditions or causes of death.
I appreciate the sentiment, but do you really know enough about the situaiton to provide added value here (maybe you do.... just asking).
Hey all,
Interesting stuff. I want to thank whoever it was out there that first posted about Cozaar, Losartan, and valsartan it all sounds promising.
My name is Steve and I am a 34 year old male. I was diagnosed at birth with a bicuspid valve. I have never had any symptoms with this and have always had an active normal live. 6'2" 180lbs.
Last summer I decided to get a CT done since I hadn't in over 10 years. Well I wish I would have done it sooner as my ct discovered an aneurysm of my ascending aorta of 4.9 cm. I was put on 50mg metoprolol daily but nothing else. I have had 2 ct's done since last July and I am still stable at 4.9 cm. I am encouraged about these drugs that may slow the growth or reverse it of the aneurysm as I would probably be able to avoid surgery until my valve possibly needed to replaced in my 50's or 60's.
I am going to contact my surgeon and cardiologist as soon as I can to see about getting put on one of these other drugs possibly.
Thanks again and best of luck to us all.
Keep the faith,
Steve
You and I are in somewhat similar situations. I'm 6'1", 190 lbs, used to be athletic before my diagnosis, not quite Marfan but some type of milder connective tissue problem, 3.8 cm aortic root, tricuspid aortic valve (we are fortunate that we do not have bicuspids!). Kind of throws a cramp in your style, doesn't it?
I came back from my cardiologist appt 6 months back with some more aortic growth, as usual. I was disappointed and said a prayer to the Lord Jesus Christ - and a day or two later, I got an email from the National Marfan Foundation regarding the losartan studies. Wow, what a direct answer.
I called my doc up and he prescribed me not Losartan but valsartan, which is a similar drug. He put me on a very light dose (80 mg/day), about half of what someone my body size would be taking in Dr. Dietz' study on adolescents this fall.
Fast forward 6 months - I had my follow-up echo last Monday. Thank the Lord - no growth. All my numbers were "identical to last time," according to my cardio. That is unusual because my aorta had been growing up until then. We cranked up the dosage to 160mg/day, which is more in line with what someone my size should be taking. I'm praying that at my next echo, the aorta will have shrunk. Who knows? I'm just happy for now.
I've spoken with other people taking losartan, and they also have stabilized their aortic roots. One lady I know was taking a pretty high dosage (300 mg of Avapro/irbesartan per day, the max you should take for that drug) and her aorta shrunk from 4.2 cm to 3.7 cm over a 6-mo. period.
None of that answers your question directly, but there is indirect, un-official basis for having a lot of hope for these studies. Talk to your cardiologist and see if he or she will prescribe some for you at a *HIGH* dosage. You're almost at the threshold for surgery, so tread carefully. I'll pray you experience the same kind of (seeming) success as me, if not better!
†
Nick
PS - The above does not constitute medical advice; disclaimer disclaimer ad nauseum ad infinitum.
If you do get to where you need surgery, make certain you go with a highly experienced surgeon who has done hundreds of aortic repairs. Cleveland Clinc has a great reputation. I had my surgery done by Dr. Vincent Gaudiani in California, he's done hundreds of such operations. I had a mini-sternotomy (only 4" near-invisible scar), and was on pump for only 25 minutes. Don't get someone who has only done a few of these!
We did an MRI and it measured 4.2. The echo has about a .2 margin for error. An echo last week measured the aortic root at about 4.3 or 4.4. My point is to get an MRI to baseline it first and then once every year or two just to check it.
I watched it grow .2 about every two years since it '92, it was 3.9 then. Don't worry about about a .1 or .2 change it's not that accurate.
I'm also hoping to see it shrink but who knows. I figure I have 7 to 10 years to see but who knows about that too.
not sure if you'll read this since you posted a year ago.
i have Aortic Aneurysm about. 6.cm
any drug or Losartan can help me
thanks
41 years old.
6' 1"
Went from 200lbs to 280 pounds since dialaiton was found (5 year timeframe).
Was an avid cyclist (competitive) until this happened then I became depressed and quit doing much of anything. No longer depressed and have hired a personal trainer. Down to 260..... worried though because it is mostly weights.
Dilation found by chance about 5 years ago. Valve is fine. Any surgery would spare valve. Remained stable at 4.1 CM measured yearly until last year when it grew to 4.6 (worried because that is the period after beginning weight training). We now measure it every six months, the first of which will be this friday.
In the meantime my doc put me on cozaar 50mg 6 months ago. We shall see what happened because measurment and doc appointment happen at same time this friday. I'm scared to death because my gut says surgery is in my future.
ie do you really know enough about this persons condition to know we are talking apples to apples? I know very little about my Aunts friends medical conditions or causes of death.
I appreciate the sentiment, but do you really know enough about the situaiton to provide added value here (maybe you do.... just asking).
Interesting stuff. I want to thank whoever it was out there that first posted about Cozaar, Losartan, and valsartan it all sounds promising.
My name is Steve and I am a 34 year old male. I was diagnosed at birth with a bicuspid valve. I have never had any symptoms with this and have always had an active normal live. 6'2" 180lbs.
Last summer I decided to get a CT done since I hadn't in over 10 years. Well I wish I would have done it sooner as my ct discovered an aneurysm of my ascending aorta of 4.9 cm. I was put on 50mg metoprolol daily but nothing else. I have had 2 ct's done since last July and I am still stable at 4.9 cm. I am encouraged about these drugs that may slow the growth or reverse it of the aneurysm as I would probably be able to avoid surgery until my valve possibly needed to replaced in my 50's or 60's.
I am going to contact my surgeon and cardiologist as soon as I can to see about getting put on one of these other drugs possibly.
Thanks again and best of luck to us all.
Keep the faith,
Steve