Pawstruck
Member
Hello Everyone,
Just though I'd say how much I appreciate all the posts I've been reading, especially the pre-op and post-op threads. I feel much more prepared because of them and I am grateful...thank you! In the interest of helping someone else, I thought I would share my story--I'm sorry to write a book but hopefully it will spare someone the frustration and dangerous situation I've experienced over the last 15 months. I'm currently consulting with the Yale Aortic Institute at Yale-New Haven, Yale University School of Medicine and am scheduled for Ascending Aortic Aneurysm surgery at the University of Minnesota Aortic Center in 4 days (Friday, May 22, 2015). No issue with my valve but very hard to find an aneurysm discussion forum like this one.
I figure if many of you can make it through valve replacement AND aneurysm repair, this is a good place for me to learn.
My aneurysm is 4.3 cm but it is symptomatic--it hurts, and all symptomatic aneurysms should be seriously evaluated by an experienced Cardiothoracic surgeon (Yale research.) At least 6 doctors in MN told me it wasn't my heart when I showed up at the ER with chest pain,back pain, etc—no one understood except the Yale Aortic Institute. I contacted them through email and they have been very helpful.
The human heart is so complicated that Cardiologists can only pick a small aspect or two for their “specialty” and if it isn't aneurysms, most of them don't keep up to date with the changing information.
Dr. John Elefteriades (Yale) wrote the evaluation criteria for aneurysms and he updates it, but very few Cardiologists, ER docs or Family docs read up on or discuss aneurysms. That's one of the reasons why they call it the “Silent Epidemic.” Cleveland Clinic is, of course, an exception but some still follow the old criteria. My surgeon at the U of M trained at Cleveland Clinic. A great article with important information on this is "Beating a Sudden Killer" (by John A Elefteriades) http://www.iradonline.org/pdf/elefteriades.pdf
Main Points
(Taken from consultation with Yale and Cleveland Clinic updated evaluation criteria)
* The “Watch and Wait” approach does NOT apply to a symptomatic aneurysm--no matter the size or your age--if it hurts, you should be evaluated by an experienced surgeon. Both Yale and Dr. Pochettino (Mayo Clinic) told me that aneurysms “speak to us” and should be listened to, especially if you are considered young to have it (child to late 50’s criteria) Yes, a very long youth.
* If the aneurysm is growing quickly (more than 0.12 cm/year) or you’'re a small person with an aneurysm, you have serious risk factors and these factors allow a surgeon to prioritize your surgery.
* If you have any relatives, especially first level (mother, brother) or even second level (first cousin, grandparent), you have a higher risk factor (genetics) and again, this is a factor that allows surgeons to consider elevating you to surgical status. My first cousin died suddenly at 43 from a heart-related issue and his brother has an Ascending Aortic Aneurysm.
* Symptoms of an aneurysm include upper back/shoulder pain that radiates downward and around your ribcage up to your chest, throat pressure (any amount) up through your jaw (right or left side). Symptoms may come and go and blood pressure can elevate quickly.
I am a 57 yr. old professor (female) in good health other than hypertension, which is under control with 50mg Losartan and 12.5 HCT. In May 2014 I chose to have a CT Calcium Heart Scan due to the fact that I'd been having chest pain on and off for about a year. It's very affordable at Minneapolis Heart Institute, a respected heart hospital--just $100. It showed no blockage of the coronary arteries but revealed a 4.2 Ascending Aortic Aneurysm.
My first cardiologist missed it (told me he didn't know how to interpret these new calcium scans); second cardiologist said just to watch and wait and take Beta Blockers. Three radiologists measured it incorrectly and one read my Echo incorrectly, categorizing leakage of my aortic valve as "trivial" when Yale radiologist said it is definitely not trivial. Leakage indicates there is something going on with the aorta. Not one doctor considered pain a “red flag.”
In September 2014, I started having stronger pain between my shoulder blades, radiating into my chest and pressure up through my throat and into my right ear. ER doctor said it was just hypertension and not related to my aneurysm, which really wasn't an aneurysm at all (according to him) and no big deal since a lot of people have them.
Two months later, I ended up flat on my back from this same kind of pain--only worse--while finishing Thanksgiving prep. Didn't feel stressed or exhausted, it just hit. It started in the center of the chest, and between my shoulder blades, and continued in intervals (8-9 minutes of pain/6-7 minutes no pain) for 2-3 hours--then went away. I also felt mild shooting pain in my right jaw and a small amount of pressure in the throat. My blood pressure shot up to approximately 160/105 topping out at 220/110+. The EMT was actually flustered in the ambulance and couldn't get my IV in because of the level of BP.
This time the ER doctor admitted me for overnight observation but told me it wasn't the aneurysm or my heart.
At the end of January 2015, I had another episode of this and chose not to go to the ER because I knew they would say, "It’s not your heart or your aneurysm." In desperation, I contacted Dr. Elefteriades and he got right back to me, asked for my records, and agreed that the aneurysm could be symptomatic.
I sent my 4 CTs and Echo, and started researching hospitals and surgeons in the Twin Cities.
End of February 2015, another episode and ER visit, only to be told by another ER doctor that I didn't have an aneurysm. According to him, it had “reduced in size" from a 4.2 to a 3.8 and no longer qualified as an aneurysm. He diagnosed me with Coronary Artery spasms and gave me a calcium blocker, which I did not take. By this point, I was so discouraged I didn't want to think about it anymore.
Mid-April 2015 I had another episode and it was far worse than the others. Pain started between my shoulder blades and moved down and around my ribcage up into the front of my chest (like a vise) and up through my right jaw—every 6 minutes for 3 hours until my right jaw felt like it was going to blow off the side of my head. I never want to go through that again. I contacted Dr. E and he called me to confirm that I definitely have a 4.2 cm aneurysm, probably symptomatic, and in need of a serious evaluation by an experienced surgeon.
It was very helpful to have an expert on aneurysms in my corner and the U of M expedited my appointment and agreed to do the surgery--even at 4.3 cm (the size they measured it at). I would urge anyone who is experiencing symptoms to refuse to take NO for an answer. Smaller aneurysms do rupture and no one knows why.
Find a doctor who is up to date on aneurysms. You can do this by checking your insurance site for Cardiothoracic Surgeons and reading their bios to see if their specialty is ascending aortic aneurysms or whatever type you have. As to Family docs, ER docs, and most Cardiologists, they mean well but don't have time to read everything. It is your life, not theirs, and you know your body. You are worth saving.
I know this is a long post, but if it helps one person…
Just though I'd say how much I appreciate all the posts I've been reading, especially the pre-op and post-op threads. I feel much more prepared because of them and I am grateful...thank you! In the interest of helping someone else, I thought I would share my story--I'm sorry to write a book but hopefully it will spare someone the frustration and dangerous situation I've experienced over the last 15 months. I'm currently consulting with the Yale Aortic Institute at Yale-New Haven, Yale University School of Medicine and am scheduled for Ascending Aortic Aneurysm surgery at the University of Minnesota Aortic Center in 4 days (Friday, May 22, 2015). No issue with my valve but very hard to find an aneurysm discussion forum like this one.
I figure if many of you can make it through valve replacement AND aneurysm repair, this is a good place for me to learn.My aneurysm is 4.3 cm but it is symptomatic--it hurts, and all symptomatic aneurysms should be seriously evaluated by an experienced Cardiothoracic surgeon (Yale research.) At least 6 doctors in MN told me it wasn't my heart when I showed up at the ER with chest pain,back pain, etc—no one understood except the Yale Aortic Institute. I contacted them through email and they have been very helpful.
The human heart is so complicated that Cardiologists can only pick a small aspect or two for their “specialty” and if it isn't aneurysms, most of them don't keep up to date with the changing information.
Dr. John Elefteriades (Yale) wrote the evaluation criteria for aneurysms and he updates it, but very few Cardiologists, ER docs or Family docs read up on or discuss aneurysms. That's one of the reasons why they call it the “Silent Epidemic.” Cleveland Clinic is, of course, an exception but some still follow the old criteria. My surgeon at the U of M trained at Cleveland Clinic. A great article with important information on this is "Beating a Sudden Killer" (by John A Elefteriades) http://www.iradonline.org/pdf/elefteriades.pdf
Main Points
(Taken from consultation with Yale and Cleveland Clinic updated evaluation criteria)
* The “Watch and Wait” approach does NOT apply to a symptomatic aneurysm--no matter the size or your age--if it hurts, you should be evaluated by an experienced surgeon. Both Yale and Dr. Pochettino (Mayo Clinic) told me that aneurysms “speak to us” and should be listened to, especially if you are considered young to have it (child to late 50’s criteria) Yes, a very long youth.
* If the aneurysm is growing quickly (more than 0.12 cm/year) or you’'re a small person with an aneurysm, you have serious risk factors and these factors allow a surgeon to prioritize your surgery.
* If you have any relatives, especially first level (mother, brother) or even second level (first cousin, grandparent), you have a higher risk factor (genetics) and again, this is a factor that allows surgeons to consider elevating you to surgical status. My first cousin died suddenly at 43 from a heart-related issue and his brother has an Ascending Aortic Aneurysm.
* Symptoms of an aneurysm include upper back/shoulder pain that radiates downward and around your ribcage up to your chest, throat pressure (any amount) up through your jaw (right or left side). Symptoms may come and go and blood pressure can elevate quickly.
I am a 57 yr. old professor (female) in good health other than hypertension, which is under control with 50mg Losartan and 12.5 HCT. In May 2014 I chose to have a CT Calcium Heart Scan due to the fact that I'd been having chest pain on and off for about a year. It's very affordable at Minneapolis Heart Institute, a respected heart hospital--just $100. It showed no blockage of the coronary arteries but revealed a 4.2 Ascending Aortic Aneurysm.
My first cardiologist missed it (told me he didn't know how to interpret these new calcium scans); second cardiologist said just to watch and wait and take Beta Blockers. Three radiologists measured it incorrectly and one read my Echo incorrectly, categorizing leakage of my aortic valve as "trivial" when Yale radiologist said it is definitely not trivial. Leakage indicates there is something going on with the aorta. Not one doctor considered pain a “red flag.”
In September 2014, I started having stronger pain between my shoulder blades, radiating into my chest and pressure up through my throat and into my right ear. ER doctor said it was just hypertension and not related to my aneurysm, which really wasn't an aneurysm at all (according to him) and no big deal since a lot of people have them.
Two months later, I ended up flat on my back from this same kind of pain--only worse--while finishing Thanksgiving prep. Didn't feel stressed or exhausted, it just hit. It started in the center of the chest, and between my shoulder blades, and continued in intervals (8-9 minutes of pain/6-7 minutes no pain) for 2-3 hours--then went away. I also felt mild shooting pain in my right jaw and a small amount of pressure in the throat. My blood pressure shot up to approximately 160/105 topping out at 220/110+. The EMT was actually flustered in the ambulance and couldn't get my IV in because of the level of BP.
This time the ER doctor admitted me for overnight observation but told me it wasn't the aneurysm or my heart.
At the end of January 2015, I had another episode of this and chose not to go to the ER because I knew they would say, "It’s not your heart or your aneurysm." In desperation, I contacted Dr. Elefteriades and he got right back to me, asked for my records, and agreed that the aneurysm could be symptomatic.
I sent my 4 CTs and Echo, and started researching hospitals and surgeons in the Twin Cities.
End of February 2015, another episode and ER visit, only to be told by another ER doctor that I didn't have an aneurysm. According to him, it had “reduced in size" from a 4.2 to a 3.8 and no longer qualified as an aneurysm. He diagnosed me with Coronary Artery spasms and gave me a calcium blocker, which I did not take. By this point, I was so discouraged I didn't want to think about it anymore.
Mid-April 2015 I had another episode and it was far worse than the others. Pain started between my shoulder blades and moved down and around my ribcage up into the front of my chest (like a vise) and up through my right jaw—every 6 minutes for 3 hours until my right jaw felt like it was going to blow off the side of my head. I never want to go through that again. I contacted Dr. E and he called me to confirm that I definitely have a 4.2 cm aneurysm, probably symptomatic, and in need of a serious evaluation by an experienced surgeon.
It was very helpful to have an expert on aneurysms in my corner and the U of M expedited my appointment and agreed to do the surgery--even at 4.3 cm (the size they measured it at). I would urge anyone who is experiencing symptoms to refuse to take NO for an answer. Smaller aneurysms do rupture and no one knows why.
Find a doctor who is up to date on aneurysms. You can do this by checking your insurance site for Cardiothoracic Surgeons and reading their bios to see if their specialty is ascending aortic aneurysms or whatever type you have. As to Family docs, ER docs, and most Cardiologists, they mean well but don't have time to read everything. It is your life, not theirs, and you know your body. You are worth saving.
I know this is a long post, but if it helps one person…
