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HELP: Aortic Aneurysm need second opinion
I just got diagnosed with a dilated descending aorta. The aneurysm is at 5 cm and they want to do stent graft replacement surgery.
I need advice/help on several issues here. First, here's a background on me and my case:
MY HEALTH STATS:
The doctors can't figure out why I have this. They all look at me with question marks in their eyes. I DO NOT have Marfan's syndrome. No one in my family has it. No one in my family has had any heart related health issues ever. No history of heart attack or cardiac arrest. Most of my family have died from cancer. I'm 5'8" and 125 lbs (thin and slightly muscular) I'm half Japanese. My blood pressure is 115/69. I work out 2-3 times a week without lots of cardio (mostly do yoga and isometric exercises).I recently quit smoking (but when I did smoke a pack would last almost a week so approximately 3 cigarettes a day). I guestimate that I smoked for approximately 15 years. I was diagnosed with a heart murmur at around nine years of age. The doctors said then that it was mild and wouldn't cause any long term effects. Most of the doctors who listened
to my heart recently said they couldn't even hear it.
MY PERSONAL RECENT HISTORY:
I just came out of the most traumatic and stressful 6 months of my life. In February I began having chest pains.
The chest pains were about one inch left of the center of my sternum between my 4th & 5th ribs. It was a dull throbbing ache that pulsed with each heart beat. Nothing sharp about it. They never moved and never radiated. Sometimes I had back pain between my shoulder blades from poor posture while standing for long periods of time. Sometimes it was difficult to sleep or lay down on my left side, but I mostly sleep on my back anyway. It seemed the pains went away after deep breathing (I tend to "hold my breath" when I'm thinking a lot or stressed). I noticed the pain more when I had been standing for long periods of time. I do have slight scoliosis curvature in that area.
At the end of March, I began to see acupuncturists for fertility treatments, and told them about the heart/chest pains. They gave me herbs which helped immensely.
MY DIAGNOSIS:
In April 2009 I got a chest x-ray at a clinic because my TB skin test was questionable. I got the TB test because the state of Hawaii requires a TB test for their Tattoo License. I did not have any cough. (I am a tattoo artist of 15 years and was applying for the Hawaii State Tattoo License) The x-ray ruled out TB, but showed a dilated descending aorta. 6 weeks went by, no one contacted me. On June 3rd, someone contacted me and referred me to a hospital. Three doctors listened to my heart via stethoscope they couldn't do the CT scan then, because I might have been pregnant. The three doctors said that it didn't sound so bad and we could wait two weeks to see if I was pregnant or not to order the tests. and I got a CT scan on June 18, 2009 which showed the
aneurysm in the descending aorta. The GP said it was 5.6 cm. I needed to come back for a CT scan the next day. They only scanned the thorax area, but the surgeon needed a scan down to the pelvis, so the scheduled another scan for June 22nd. After the surgeon reviewed the scan, he said the aneurysm is at 5 cm. He recommended stent graft replacement. I'm afraid of surgery, since it is a "young" procedure only being around for 20 years, and I plan to live another 40 years minimum. I don't know how long these stents can last in the body. I also don't have insurance and the $112,000 or so will break me financially. Wouldn't that add more stress?
SELF-RESEARCH:
I want to get a second opinon asap. But I smell something fishy already. If it's so crucial I get surgery now, why are they now making me wait ten days to get my results from the second CT scan (when they got the results from the first one in less than 4 hours?) So they're telling me it's really dangerous, but not so dangerous for me to stay in the hospital? I started doing my own research and found a few bits of information out. I do want a second and maybe third opinion. Here's what I've found out so far, via google....
1. Yale published a paper that followed 3000 people with dilated aortas and found that the "hinge point" for the descending aorta is 7 cm. They recommend surgery before the descending aorta gets to 6 cm. Here's the link:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2605304
2. I found a message board with people with aortic aneurysms who are taking Losortan (a BP medication - I think it's a beta blocker) which has been shown to have the nice "side effect" of shrinking the diameter of the dilated aorta. Does anyone have any information on this. I asked the surgeon and he said it was a BP medication and ignored my question about it shrinking the diameter of the aorta.
3. Also found a med called Propranolol anyone know of or seen this in use?
MY QUESTIONS
I have a lot of questions, and hope that some "experts" here can help me fine tune getting a second opinion and what my potential possibilities are. So, please bear with me.
Please keep in mind that my first priority is to make my heart healthy enough to sustain a pregnancy as soon as possible. I'm 40 and would like to have one child as soon as I can.
1. Will drugs like Losartan help reduce the aortic size? How long will it take for reduction if I'm vigilant on reducing stress and improving my exercise habits and diet?
2. How quickly will this aneurysm grow? How quickly can it shrink?
3. Can it shrink on it's own? Or is it once the walls of the aorta are stretched, they never return to "normal" sizes.
4. I can't find information on pregnancy with dilated aortas WITHOUT Marfan's syndrome... does anyone have any statistics of pregnancy results for non-Marfan's patients who have dilated aortas?
5. What's causing my aneurysm? Especially if my risk factors for heart disease are basically nil.
6. Any other types of treatments out there that are non-invasive like surgery? Are there herbs, or life style changes I can make to get my aortic diameter to a "healthy" level for pregnancy?
7. Can I pass this onto my child?
8. Should I give up hopes on pregnancy?
9. What are my chances of aortic dissection?
10. What are the success rates of stent graft surgery? (can't find these online).
11. What are the chances of risks or complications from stent graft surgery.(the surgeon told me some, but I feel they may gloss over some information in order for me to just get the surgery done.
12. What is the average cost of stent graft surgery? (One friend of mine had it and it cost him $30,000 the hospital I'm at won't give me a definite answer and this is frustrating me). Everyone says, "I don't handle the money part..." but I have no insurance (was in the middle of applying for insurance for my pregnancy but now afraid no one will insure me).
13. Is it realistic to think that meds and lifestyle changes can reduce this dilation?
14. Can taking beta-blocker meds like Losortan or Propanolol mess me up if I don't have high blood pressure?
15. Does anyone know of other meds that can shrink a dilated aorta and is safe for someone planning to conceive?
16. What are the dangers of traveling with an aneurysm of 5cm. My boyfriend lives in Thailand and I had to cancel my trip for the 23rd to deal with doctor's appointments. I miss him and have a very relaxing lifestyle there, much more than here in Los Angeles. Can I travel to see him before surgery? It is around 20-27 hours of travel time to get to Thailand. I travel well. I don't stress being on flights.
17. If I get the surgery, what are travel restrictions for after surgical stent graft?
I know there are a lot of questions here. Even if you don't have the answers to all of them, please answer what you can. I appreciate it so much! Thank you!
I need advice/help on several issues here. First, here's a background on me and my case:
MY HEALTH STATS:
The doctors can't figure out why I have this. They all look at me with question marks in their eyes. I DO NOT have Marfan's syndrome. No one in my family has it. No one in my family has had any heart related health issues ever. No history of heart attack or cardiac arrest. Most of my family have died from cancer. I'm 5'8" and 125 lbs (thin and slightly muscular) I'm half Japanese. My blood pressure is 115/69. I work out 2-3 times a week without lots of cardio (mostly do yoga and isometric exercises).I recently quit smoking (but when I did smoke a pack would last almost a week so approximately 3 cigarettes a day). I guestimate that I smoked for approximately 15 years. I was diagnosed with a heart murmur at around nine years of age. The doctors said then that it was mild and wouldn't cause any long term effects. Most of the doctors who listened
to my heart recently said they couldn't even hear it.
MY PERSONAL RECENT HISTORY:
I just came out of the most traumatic and stressful 6 months of my life. In February I began having chest pains.
The chest pains were about one inch left of the center of my sternum between my 4th & 5th ribs. It was a dull throbbing ache that pulsed with each heart beat. Nothing sharp about it. They never moved and never radiated. Sometimes I had back pain between my shoulder blades from poor posture while standing for long periods of time. Sometimes it was difficult to sleep or lay down on my left side, but I mostly sleep on my back anyway. It seemed the pains went away after deep breathing (I tend to "hold my breath" when I'm thinking a lot or stressed). I noticed the pain more when I had been standing for long periods of time. I do have slight scoliosis curvature in that area.
At the end of March, I began to see acupuncturists for fertility treatments, and told them about the heart/chest pains. They gave me herbs which helped immensely.
MY DIAGNOSIS:
In April 2009 I got a chest x-ray at a clinic because my TB skin test was questionable. I got the TB test because the state of Hawaii requires a TB test for their Tattoo License. I did not have any cough. (I am a tattoo artist of 15 years and was applying for the Hawaii State Tattoo License) The x-ray ruled out TB, but showed a dilated descending aorta. 6 weeks went by, no one contacted me. On June 3rd, someone contacted me and referred me to a hospital. Three doctors listened to my heart via stethoscope they couldn't do the CT scan then, because I might have been pregnant. The three doctors said that it didn't sound so bad and we could wait two weeks to see if I was pregnant or not to order the tests. and I got a CT scan on June 18, 2009 which showed the
aneurysm in the descending aorta. The GP said it was 5.6 cm. I needed to come back for a CT scan the next day. They only scanned the thorax area, but the surgeon needed a scan down to the pelvis, so the scheduled another scan for June 22nd. After the surgeon reviewed the scan, he said the aneurysm is at 5 cm. He recommended stent graft replacement. I'm afraid of surgery, since it is a "young" procedure only being around for 20 years, and I plan to live another 40 years minimum. I don't know how long these stents can last in the body. I also don't have insurance and the $112,000 or so will break me financially. Wouldn't that add more stress?
SELF-RESEARCH:
I want to get a second opinon asap. But I smell something fishy already. If it's so crucial I get surgery now, why are they now making me wait ten days to get my results from the second CT scan (when they got the results from the first one in less than 4 hours?) So they're telling me it's really dangerous, but not so dangerous for me to stay in the hospital? I started doing my own research and found a few bits of information out. I do want a second and maybe third opinion. Here's what I've found out so far, via google....
1. Yale published a paper that followed 3000 people with dilated aortas and found that the "hinge point" for the descending aorta is 7 cm. They recommend surgery before the descending aorta gets to 6 cm. Here's the link:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2605304
2. I found a message board with people with aortic aneurysms who are taking Losortan (a BP medication - I think it's a beta blocker) which has been shown to have the nice "side effect" of shrinking the diameter of the dilated aorta. Does anyone have any information on this. I asked the surgeon and he said it was a BP medication and ignored my question about it shrinking the diameter of the aorta.
3. Also found a med called Propranolol anyone know of or seen this in use?
MY QUESTIONS
I have a lot of questions, and hope that some "experts" here can help me fine tune getting a second opinion and what my potential possibilities are. So, please bear with me.
Please keep in mind that my first priority is to make my heart healthy enough to sustain a pregnancy as soon as possible. I'm 40 and would like to have one child as soon as I can.
1. Will drugs like Losartan help reduce the aortic size? How long will it take for reduction if I'm vigilant on reducing stress and improving my exercise habits and diet?
2. How quickly will this aneurysm grow? How quickly can it shrink?
3. Can it shrink on it's own? Or is it once the walls of the aorta are stretched, they never return to "normal" sizes.
4. I can't find information on pregnancy with dilated aortas WITHOUT Marfan's syndrome... does anyone have any statistics of pregnancy results for non-Marfan's patients who have dilated aortas?
5. What's causing my aneurysm? Especially if my risk factors for heart disease are basically nil.
6. Any other types of treatments out there that are non-invasive like surgery? Are there herbs, or life style changes I can make to get my aortic diameter to a "healthy" level for pregnancy?
7. Can I pass this onto my child?
8. Should I give up hopes on pregnancy?
9. What are my chances of aortic dissection?
10. What are the success rates of stent graft surgery? (can't find these online).
11. What are the chances of risks or complications from stent graft surgery.(the surgeon told me some, but I feel they may gloss over some information in order for me to just get the surgery done.
12. What is the average cost of stent graft surgery? (One friend of mine had it and it cost him $30,000 the hospital I'm at won't give me a definite answer and this is frustrating me). Everyone says, "I don't handle the money part..." but I have no insurance (was in the middle of applying for insurance for my pregnancy but now afraid no one will insure me).
13. Is it realistic to think that meds and lifestyle changes can reduce this dilation?
14. Can taking beta-blocker meds like Losortan or Propanolol mess me up if I don't have high blood pressure?
15. Does anyone know of other meds that can shrink a dilated aorta and is safe for someone planning to conceive?
16. What are the dangers of traveling with an aneurysm of 5cm. My boyfriend lives in Thailand and I had to cancel my trip for the 23rd to deal with doctor's appointments. I miss him and have a very relaxing lifestyle there, much more than here in Los Angeles. Can I travel to see him before surgery? It is around 20-27 hours of travel time to get to Thailand. I travel well. I don't stress being on flights.
17. If I get the surgery, what are travel restrictions for after surgical stent graft?
I know there are a lot of questions here. Even if you don't have the answers to all of them, please answer what you can. I appreciate it so much! Thank you!
Hi ETStanley.. Any update on your condition? I'd like to know how you got this solved. Keep us posted.
Whew, Mammo.... you have more questions than answers!!! Let's see if I can address it all. I do appreciate people's concerns and replies, so thanks so much for posting here! Funny how people love pharmaceuticals but hate herbs..... well let's try to tackle this one. I'll respond to your comments/questions with a // preceding my reply.
Be very, very careful with herbal remedies, especially if you become pregnant.
//Yes, I know which ones to quit when/if I become pregnant.
I would not rule out your heart, especially with your symptoms. Have they done an EKG or stress test?
// Yes, everything is in the normal/extremely healthy range. So far eight doctors are mystified as to why I have this when I have BP of a teen-ager, low cholesterol (haven't eaten red meat since 1986), and a steady, low heart rate. The only factor they are not considering is that I have led a highly stressful lifestyle up until recently. I've also been reading a book called "Take A Load Off Your Heart" and it is the first place (internet, doctors office or anywhere) that actually gives a lot of weight to stress and lifestyle. It includes a test for recent and future stressful life-occurrences. They say a score of 300 means an 80% chance of major illness within the next year. my score was nearly 900! So, I'm taking steps to "mellow-out."
I worry about you being so involved with herbs, are you aware of how dangerous they can be to your health? Are your doctors aware of any herbs you take? If not, they need to know!
//Yes, I am very careful. I know which ones to take and when and why. My cardiologist says I'm taking all the right stuff. Especially for hearts. Do some research, look into Hawthorne, it could save your husband's life if he ever has heart failure.
Nobody oversees these "herbs", or what side effects they can have on our bodies, it's a guessing game!
//The same could be said about pharmaceuticals... have you ever noticed how many pharmaceuticals are recalled? I was once prescribed Vioxx for arthritis... thank goodness I never bought it because I preferred herbs and vitamins. I took glucosamine instead. I'd probably be dead by now if I took the Vioxx, especially now knowing that I have a "heart condition."
If I were you, I'd have the surgery, and then start trying to conceive.
//I'd have the surgery if I could come up with $112,000
Please do not use herbal remedies to help you conceive, you are putting yourself and your baby at risk.
//You should read "The Infertility Cure" before suggesting things you don't know about.
I would not travel with this. Can your boyfriend come to you?
//If he could, he'd be here.
You need to get healthy first and foremost!
//That's what I'm trying to do.
So that when you do conceive, you will be around to see your baby grow up.
//That's what I'm planning to do!
I'm happy to see you being pro-active with your health (except for the herbals) and I'm a big fan of second opinions!
//Finally got a second opinion.
I worry more about what all your stressing out about this, is doing to you, than anything else.
//Actually trying to answer someone's 20 questions is the biggest source of stress I've had this week! :)
It's wonderful that we have the internet and so many resources, but sometimes all the info can cloud our decison making. I know I wasn't of much help, but do wish you luck with this.
//Thanks! I appreciate it. I do suggest looking more into herbs before making assumptions. I think your husband would do well by looking into Dr. Schulze's Heart Protect formula (I don't work for him, but know of his history of successes and integrity in his formulae).
Be very, very careful with herbal remedies, especially if you become pregnant.
//Yes, I know which ones to quit when/if I become pregnant.
I would not rule out your heart, especially with your symptoms. Have they done an EKG or stress test?
// Yes, everything is in the normal/extremely healthy range. So far eight doctors are mystified as to why I have this when I have BP of a teen-ager, low cholesterol (haven't eaten red meat since 1986), and a steady, low heart rate. The only factor they are not considering is that I have led a highly stressful lifestyle up until recently. I've also been reading a book called "Take A Load Off Your Heart" and it is the first place (internet, doctors office or anywhere) that actually gives a lot of weight to stress and lifestyle. It includes a test for recent and future stressful life-occurrences. They say a score of 300 means an 80% chance of major illness within the next year. my score was nearly 900! So, I'm taking steps to "mellow-out."
I worry about you being so involved with herbs, are you aware of how dangerous they can be to your health? Are your doctors aware of any herbs you take? If not, they need to know!
//Yes, I am very careful. I know which ones to take and when and why. My cardiologist says I'm taking all the right stuff. Especially for hearts. Do some research, look into Hawthorne, it could save your husband's life if he ever has heart failure.
Nobody oversees these "herbs", or what side effects they can have on our bodies, it's a guessing game!
//The same could be said about pharmaceuticals... have you ever noticed how many pharmaceuticals are recalled? I was once prescribed Vioxx for arthritis... thank goodness I never bought it because I preferred herbs and vitamins. I took glucosamine instead. I'd probably be dead by now if I took the Vioxx, especially now knowing that I have a "heart condition."
If I were you, I'd have the surgery, and then start trying to conceive.
//I'd have the surgery if I could come up with $112,000
Please do not use herbal remedies to help you conceive, you are putting yourself and your baby at risk.
//You should read "The Infertility Cure" before suggesting things you don't know about.
I would not travel with this. Can your boyfriend come to you?
//If he could, he'd be here.
You need to get healthy first and foremost!
//That's what I'm trying to do.
So that when you do conceive, you will be around to see your baby grow up.
//That's what I'm planning to do!
I'm happy to see you being pro-active with your health (except for the herbals) and I'm a big fan of second opinions!
//Finally got a second opinion.
I worry more about what all your stressing out about this, is doing to you, than anything else.
//Actually trying to answer someone's 20 questions is the biggest source of stress I've had this week! :)
It's wonderful that we have the internet and so many resources, but sometimes all the info can cloud our decison making. I know I wasn't of much help, but do wish you luck with this.
//Thanks! I appreciate it. I do suggest looking more into herbs before making assumptions. I think your husband would do well by looking into Dr. Schulze's Heart Protect formula (I don't work for him, but know of his history of successes and integrity in his formulae).
My husband recently had surgery for this. We were told that it was from smoking. The new stents are much better than the old ones, as they are coated with a type of silicone that keeps plaque from building up. Stents can collapse, but it's rare and never totally, but surgery is usually needed to repair them. I have never heard of one of these shrinking on their own, but I know if it should burst, it can be fatal. Propanolol I take for a tremor in my hand, it is also used for high blood pressure, cluster headaches, and even for anxiety. It can have a bad side effect of weight gain. I've never heard of this as being something that is hereditary. Be very, very careful with herbal remedies, especially if you become pregnant. I would not rule out your heart, especially with your symptoms. Have they done an EKG or stress test? My husband had to wait a month to get his surgery, and no life style changes afterwards. He does fly. I worry about you being so involved with herbs, are you aware of how dangerous they can be to your health? Are your doctors aware of any herbs you take? If not, they need to know! Nobody oversees these "herbs", or what side effects they can have on our bodies, it's a guessing game! If I were you, I'd have the surgery, and then start trying to conceive. Please do not use herbal remedies to help you conceive, you are putting yourself and your baby at risk. I would not travel with this. Can your boyfriend come to you? You need to get healthy first and foremost! So that when you do conceive, you will be around to see your baby grow up. I'm happy to see you being pro-active with your health (except for the herbals) and I'm a big fan of second opinions! I worry more about what all your stressing out about this, is doing to you, than anything else. It's wonderful that we have the internet and so many resources, but sometimes all the info can cloud our decison making. I know I wasn't of much help, but do wish you luck with this.
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