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aortic aneurysm diagnosis
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aortic aneurysm diagnosis

I have ben diagnosed with a ascending aortic aneurysm and measured at 4.5 cm. I have been told that this is not of to great a concern at this time, but will be re-checked in one year.
Now , with the area of real concern at 5.0 cm, isn`t this a little to close for a vary active 66 year old man?I do not feel that I want to sit around and wait for that pain in the chest.
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eilliw,

This may have been forming for many years and this was an incidental finding. Generally, above 5 cm replacement is indicated because that is generally when the risk of rupture really increases.  Before that the risk of the surgery is considered greater then the risk of rupture.

good luck
29 Comments
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Avatar_m_tn
I'm 47, I was diagnosed at 45 with a 5.0 cm ascending aortic aneurysm. I was very athletic (bicyling) and asymptomatic (discovered during an echo by chance). Because I was at 5.0 cm, I was past the surgical threshold, so I had surgery with 2 months to fix it. My surgery was uncomplicated, my aortic valve was fine, my coronaries did not need re-implantation, and my arch was not involved. I resumed most of my activities in 6 weeks, and a year and a half later, I can't tell from my athletic performance that I ever had any problem. I take 150 mg of Avapro and 75 mg of metoprolol daily to lower my BP and peak arterial pressure, I notice only minimal issues (lower HR, slightly lower VO2max) from the drugs. I do not lift any weight that is heavy enough to make me really strain hard (e.g. close my glottis), and I don't do any sprint level efforts on the bike, just hard aerobic and moderate anaerobic efforts.

I suggest you follow your cardiologist's advice and monitor your aneurysm through regular imaging. I assume they've put you on some type of beta blocker, make sure that you tolerate the one they have you on well, it can take several months before you know. It might be prudent to find a surgeon now, in case your aneurysm reaches 5.0 cm. The chief concern is to find a surgeon who has done a LOT of these cases and will be able to deal with any unforseen issues that arise at the time of the surgery. I suggest that you do not start treating yourself as "damaged goods", keep up with your activity and keep your fitness high. That way, if you do need surgery, you'll find that you will recover much more rapidly than if you are in poor condition. Focus on aerobic activities, and avoid lifting very heavy weights, as during such lifting, you can experience very high BP's that may accelerate your aneurysm's progress. Your chances of a dissection at 4.5 to 5.0 cm are extremely low.
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Avatar_n_tn
Hi....I just had my aortic aneurysm removed on May 11th.  I am 59 years old, female and at a little over 10 weeks since surgery, I feel great, doing almost everything except golf and any heavy lifting.

My aneurysm was at 4.5 when my surgeon urged we do it.  He felt that since I was in good health, fairly active ( I walk about 3 to 5 miles daily and workout at CURVES) we should do it.   My sister also had a 4.5 aneurysm and unfortunately she did disssect and died at age 60.  I am so glad I did it.  I feel the mental relief of not having to worry about that is a huge plus in my life.  

While the chances of dissecting at 4.5 are low and it is uncommon, with my family history I felt the best decision was to fix this.  And honestly, I did not feel the surgery was that bad.  I also had no coronary artery disease, no valve issue and it did not involve my the arch.  

It is tough to live with this condition. (I knew of mine two years before the surgery).  I suggest getting a second opinion and seeking out a surgeon known for this surgery.  I was lucky cause here in my city (Colorado Springs) I found a surgeon who trained at the Cleveland Clinic. He was great.  I literally walked out of ICU 24 hours after surgery and three weeks after surgery I was walking two miles daily.  
Take care and feel free to pick my brain.
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Avatar_m_tn
Jjc2005, did you ever get a diagnosis for the cause of your aortic aneurysm? My family is currently undergoing genetic testing, but it looks like Marfan's and Ehler-Danlos have been ruled out.
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I was tested for Ehlers-danlos and Marfan's and both were ruled out for my family.  As of now, my dna is at Cornell (along with my bad aortic tissue) as our family is in a research study for FAA (Familial Aortic Aneurysm).  I was the fourth in our family diagnosed.   I had a paternal aunt, age 63, who dissected in 1985.  She was saved in emergency surgery.  But at that time no one told us it could be genetic. In 2000, a paternal male cousin, age 51, died suddenly.   I was told it was his heart (he lives in PA, I am in CO).  In 2003, my sister was diagnosed with an aortic aneurysm with aortic insufficiency.  A year and six months after her diagnosis, she died in the emergency room.  When I went back to PA for the funeral, I talked to my cousin's brother and found out he had died of an aortic dissection, also.  
When I returned, I was scanned and they found my aneurysm. I knew then it was more than coincidental.  I went to a medical geneticist for testing.  Now some of my cousins are starting to get tested.  One male cousin, age 49, has been found to have a small dilation in the same place.  All of our aneurysms were in the aortic root.

So I have been on a quest to learn more, do more and hopefully my sister's children and my cousins' children will learn to be aware and know they can be "fixed."
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hello,
my husband is currently being monitored closely for an aortic aneurysms of 5.1 cm.  the surgeon says he will monitor every 6 mos.  He went for a 6 mos. check up in June and everything looked the same as of now.  my son who is 8 also has a slightly enlarged aortic root.  they say it is just above normal range.  he is also being monitored yearly.  no change from last year.  he was born with an unrelated heart issue Ebstein's anamoly otherwise his would probably not have been found.  the cardiologist at children's hospital in columbus sent us to a genetic clinic at children's hospital.  the genetic specialist took one look at my son and said that he shows no characteristics of Marfan or other connective tissue disorders.  He never ran any tests with the exception of some blood test that came out normal.  my son is a chunky little boy, very bright, but has low muscle tone.  This has improved over time but still continues to be an issue.  He had a muscle biopsy at age 4 to rule out any type of dystrophy.  I guess i sometimes wonder what other testing should be done if any.  My husband and son just do not fit the picture of someone with a connective tissue disease with the exception of the heart issue.  any suggestions?  

good luck with  your aneurysm.  I think it sounds much worse than it is.  I think what is more harmful are those people who are walking around and don't know they have it.  

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Do you have to take BP drugs or any other drugs after aortic surgery for the rest of life or you had abnormal BP before surgery? If aortic dilatition can be caused by many different things,like abnormal BP,marfans,various infections,old injuries,etc how can person know what caused aortic dilatation before surgery? Is there blood test for marfans?If yes what's the name of test or tests?Thank you.
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Avatar_m_tn
There is probably a genetic test for marfans but this costs thousands of dollars. It is better dianosed by the symptoms.

Very tall usually above 6'5
Abnormaly long arms and legs (usually when you extend your arms out horizontally the distance from middle finger to middle finger is the same as your height in marfans the distance will be greater)
loose joints and frequent discolations
hypermobility
detachment of the lens of the eyes
aneurysms
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Avatar_m_tn
My BP was slightly elevated at 130/90 prior to my surgery. My PCP has records going back 5+ years that show normal BP of 120/80, my elevated BP was likely due to the stress of events. However, that's not entirely the reason why they want you on a beta blocker. Beta blockers change the very nature of your heartbeat so that the peak arterial pressure is "smeared out" over a longer period of time, and they also reduce your resting and maximal heartrate. The reduction in the peak pressure lessens aterial stress - from what my cardiologist says, a lot of people could benefit from being on a beta blocker.

As for knowing the causes of an aortic aneurysm prior to surgery, in some cases, a diagnosis of Marfan's or Ehlers-Danlos is fairly obvious, and can be backed up to some extent with genetic testing. With regard to the test, I don't know the name of it, it's something that you can get ordered by a geneticist if they think you may have Marfan's or E-D.
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abbs, your family's situation sounds somewhat similar to ours. Because of my aneurysm, we got an echo on my 6 year-old son (my 8 year-old daughter has one scheduled, too). My son's aortic root was also said to be just above normal range, no other significant findings. We are working with a geneticist, so far, it does not appear that we have either Marfan's or E-D. My unusual characteristics are severe myopia (-10 diopters), my son is very thin, pale, and like your son, has low muscle tone. We are continuing tests, but from what I can see, I think we've got FAA. Like you say about your husband and son, we don't fit the picture, either.

BTW, while your husband is not yet where his cardiologist believes surgery is needed, it might be a good idea to start looking for a surgeon. As I said earlier, you want someone who has done hundreds, not dozens, of these kind of cases. You want someone who has seen it all and can react accordingly during the surgery. Let me know if you want my surgeon's name.

As you say, it's amazing to me that in spite of the relatively low number of aneurysm cases, that there is no screening for this condition in the general population. An echo can spot this condition early on, long before problems can occur.
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Thanks sooo much for the info.  My son's cardiologist keeps insisting that we should completely rule out Marfan's syndrome.  My son has already been through so much with the muscle biopsy, tonsil surgery, hernia repair, and just physical therapy to catch his motor skills up to where they should be.  My husband and son are both significantly far sighted.  MY son's cardiologist said that there is a test the opthamologist can do to test for marfan's syndrome.  I think he is just grasping at straws becasue he does not have a full understanding as to why his root is dilated just above normal range.  He is a good man and good doctor but I just do not see any signs of Marfan's.  My son is short and stocky as well as my husband. I don't think my husband has ever broken a bone or had a dislocation.  He played football etc. in high school.  My husband is seeing a surgeon in Lima, Ohio who seems pretty knowledgeable.  He said when it comes time he will replace the whole valve, root, and arch.  He indicated that this would hopefully be a once in a lifetime procedure and seemed fairly confident in himself.  I would be interested in your surgeon's name if you don't mind just to have on hand.  

thanks so much and keep me posted.  I am not sure if it is safe to give an email address on one of these forums or not?  do you?

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You can email me at ***@**** . My surgeon's name is Dr. Vincent Gaudiani, he's in Redwood City, CA. He's done over 6,000 cardiac procedures, specializing in aortic and mitral valve repairs, replacements, and re-do's. He's done hundreds of various types of aortic replacements. A friend of mine recommended him to me, she ran heart/lung machine for him for over a decade and said he was the best cardiac surgeon she ever worked with in SF and LA areas. He did a mini-sternotomy on me (my scar is only 4" long and nearly invisible), and I was on pump for only 25 minutes.

As for the test for Marfan's your cardiologist is talking about, it's a slit-lamp test. A definitive test for Marfan's is if the lens of the eye has become "dislocated". There is a thin network of collagen fibers that suspends the lens, apparently, it's the same kind of fibrilin that is in the ascending aorta that gives it extra elasticity (to handle the peak pressure pulses during the systolic phase of the heartbeat). In older and most younger Marfan's patients, this network has broken down and the lens isn't attached, it's "dislocated". This test is very simple and only takes a few minutes. My son and I both had it recently, showing no dislocation.
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I am not sure they know the cause for specific dilated aortas as of yet.  Neither my sister nor I had longterm high bp.  But we were both smokers (smoking does weaken the walls).  My mother also died of an aortic aneurysm, though hers was in the descending aorta which are not considered genetic.  She never smoked but had high blood pressure.  My cousin was slender and muscular, had quit smoking for over two decades, and seemed rather healthy.   His autopsy showed he did have clogged arteries, and early arteriosclerosis.  Before my surgery I had a heart cath showing my arteries to be clear.  My cholesterol numbers have always been good and since I started exercising regularly two years ago are really excellent.  My sister's numbers were never bad.

I think the things to check are any connective tissue disorders (Marfan's or Ehler's Danlos) and to do some family medical history.   And get in touch with doctors familiar with area of expertise.  My surgeon who trained at the Cleveland Clinic was the most aggressive with me.  His decision to do surgery was based not only on the size (which was relatively small and seemingly stable) but on my family history, age and general health condition.  I feel blessed to have had this fixed and only a month or so afterward back to a normal life.   Good luck and take care.
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Do people get memory loss as result of aortic surgery?
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I have heard that some people can get temporary memory loss if they do a "brain freeze."   I was lucky cause even though I was prepped to have my brain cooled down, when they got in there they found my aorta was healthy at the arch and so they did not have to remove as much as they thought they were going to.  I have talked to some people who had the brain freeze and I guess it depends on each person.   Some had some temporary memory loss, some did not.

Hope this helps.
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I thought I would post this comment for the time being seeing how I seem to pick the wrong times to post a question for the Doctors.  I found out last week prior to my knee surgery that I have a (as they call it) MILDLY DILATED ASCENDING AORTA which measures 4.2 cm.  I AM STILL IN SHOCK and WORRIED TO DEATH.  Talk about palpations.....THEY have been with me since finding this out. It seems that on my chest X-ray, they saw something suspicious, so they (Mayo Clinic in Jacksonville) ordered a CT scan of my chest.  WELL, the spot on my lung proved to be nothing more than scar tissue, but, the CT scan showed this dilated ascending aorta.  The internist I saw for my pre-anesthesia check-up gave me this shocking news and then proceeded to order a echocardiogram of my heart.  This also showed the dilation.  This internist advised me to have another echo in one year and see if any changes were present.  She said that if after a few years there were no changes then that would be it.  THAT WAS NOT GOOD ENOUGH FOR ME.  I called her the other day and asked for a referral to a cardio doctor and I will see him next WED. July 13.  I am a former runner and had to stop because of knee problems.  Have always been told my BP is great although it will go up before med. procedures (NERVES) I am thin, eat healthy and I am 55 year old female.  Never smoked and would drink very seldom.  I have, however, had a lot of stress and adversity in my life.  GUESS you could say I am wondering how THIS COULD HAVE HAPPENED TO ME????  I am scared to do anything at this point.  Those of you that have discussed all this with your doctors:  Is the underlying cause of this due to high blood pressure????  I just never thought I would have heart problems....SORRY to have rambled on so much, but, this is consuming my every waking moments......Christine...
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Christine, high BP is generally NOT the cause of ascending aortic aneurysms. Most are caused by genetic conditions such as Marfan's, Ehlers-Danlos, and FAA, which all affect the collagen in the ascending aorta. If you read the other comments, you'll see that some of use have had a difficult time in getting any kind of diagnosis as to why they are affected.

The important thing at this point for you to understand is that at 4.2 cm, you have a very low risk of dissection, and in fact, you're incredibly lucky because your condition was discovered at an early stage. Because most of these aneurysms are asymptomatic, the vast majority of people never realize there's a thing wrong with them. For those that progress to large aneurysms (not all progress) that dissect, the first time they known there's a problem is when they dissect. In your case, if you progress to where surgery is indicated, your doctors will know immediately and be able to act before you're in danger. Understand also that the techniques and knowledge for this surgery have advanced considerably, so that the risks are lower, and long-term prognosis is excellent.

You're doing the right thing by finding a cardiologist to work with on your condition. You should keep up a good level of activity and not let your condition restrict what you want to do. Living in fear is non-productive and will not improve your condition at all.
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pbanders is right.  My surgeon, whose area of expertise is aortic aneurysms, told me that aneurysms in the ascending aorta are almost always due to genetics.  My mother had had one in her desending aorta and I thought that my sister and I got them from her side of the family.  As it turns out, her aneurysm was due to high bp while my sister and I inherited ours from our father's side.

It was only after my cousin and sister died did we even learn about this being genetic.  Then I was tested and was told I had a mildly dilated aorta.  I did some investigation, and decided I was not content to sit and wait.  Readings and interpretation of size can vary from doctor to doctor. Please seek out either a cardiologist or surgeon who is expertise in this field and ask for all your options.
I just had the surgery seven weeks ago and I feel great.  Within four weeks I was almost back to normal.  Now I am back to power walking and jogging.  It's your life.  Research, talk to others, and check out family medical history (look for patterns of sudden death). I think you are probably where I was two years ago.  My sister had just died and then I found out I had the same thing that killed her.  After going through some months of anxiety mixed in with grieving, I decided to be proactive.
Many, many people have dealt with this surgically, while others have chosen to live with it and just keep a watch.  Decide what works for you and good luck.
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This is in regards to the last person who just posted.  Just out of curiosity how dilated were you when you had the surgery.  Did you have to have your whole valve replaced.  My husband is at 5.1 and the surgeon said he would replace the valve and the arch.  Just wondering if anyone has ever had to have the whole valve replaced?  

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Over 10yrs ago I had my aortic aneurysm repaired and my aortic valve replaced w/a St.Jude mechanical valve. My aneurysm was 6cm and my aortic valve was not diseased,however, I have Marfans Syndrome and it was common procedure to replace the valve w/repair of the aneurysm. I have never had any problems with my St.Jude valve.(Although, getting use to the clicking can take awhile) The drawback is being on coumadin for the rest of my life.  Having Marfans can leave you at risk for other aneurysms of the aorta and it is important to be monitored.
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When I had the surgery I was only dilated to 4.5 cm.  However in light of the fact that my sister dissected and died when she was at 4.5 cm, and that a cousin died of a dissection three years before (we don't know what his size was since they only found the dissection in the autopsy), the surgeron felt we should not wait. Before surgery the surgeon had me decided whether I wanted a tissue valve or a mechanical one, just in case.  But when he got in there, he chose to not replace the valve because is was strong and healthy.  Also pre the surgery he had told me they would replace the entire ascening aorta.  However when he got in there he only replace half of it because he said the rest of it was healthy and thick and decided it was not necessary.  They cannot tell everything on the scans apparently.  

I think the surgeons want us prepared for all possibilities.  So I was prepared.  I still need to be checked yearly  but my surgeon feels that since I do not have Marfans or Ehlers-danlos, he considers me "fixed" and the  chance of me having another aneurysm is remote.  I feel I am very fortunate and thankful.
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Thank you soo much for the info.  It is so nice to talk with someone else who has been there.  I hope my husband is as fortunate.  He worries so much about this.  I definitley know that things could be much worse.  Good luck with your health.
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Did doctor or surgeon tell you before surgery the risk of dying as result of aortic surgery and what is this risk in %? Where is usually (normal as well as enlarged) ascending aorta the widest in (diameter) size: at the middle (mid) or at the top just before brachiocephalic artery(distal) and what are the average diameters of the adult ascending aorta at those two places? How can person decide when to have aortic root or ascending aorta surgery when one surgeon tell him to have at 4.5cm another surgeon tells him to have at 5.0 and another tells him to have at 5.5 to 6.0cm?Thank you
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Risks vary from case to case, it's not possible to compare directly. For example, my surgery was quite uncomplicated, my arch wasn't involved, my valve wasn't involved and my coronaries didn't need reimplantation into the graft. Someone whose arch is involved or has valve issues would have a more complex surgery with higher risks. Age is also a factor. Overall, the risks associated with aortic vascular surgery have decreased dramatically over the last 20 years, leading to a lower dilation threshold for surgery.

For your detailed questions on the aortic dimensions and associated levels at which to have surgery, all I can say is that these are questions you should be asking your surgeon and cardiologist. This isn't math, where there's one answer to the problem, each doctor involved is going to have a somewhat different opinion on when to do the surgery, how to do it, and what the postop and long-term care should be. The ONLY thing you should be sure of is that you have 100% confidence in your team of doctors. If not, I strongly suggest you find doctors you CAN trust to make the right decisions.
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Thank you both for responding to me.  I am still in shock with the same old KNOT in my stomach with this DIAGNOSIS.  You are well versed in this.  This is SO NEW TO ME.  I am trying to learn as much as I can.  I do hope this worrying and anxiety that I am going through will lessen with time.  Doesn't make for a good nights sleep.  Does anyone know how many people per year are diagnosed with this, how many are walking around with this who already have been diagnosed?  I truly had never heard about it.  You hear more about clogged arteries, etc.  The surgery looks like it is pretty complicated and painful as well.  One would have to hope that the doctor stitches you up VERY VERY GOOD.  I have the fear that in between check-ups the dilation will become dangerous and one would not know it.  I am afraid to lift anything with weight, afraid to over exert myself. I did start walking again this past weekend as well as today.  I am only 11 days post-op out of knee surgery. (TORN MENISCUS)..I keep checking my BP and it seems fine..107-110/73-78...WIll be hard to check on family med. history....Many alcoholics, smokers, people who did not take care of themselves in my family background.  So, who is to say their deaths were not caused by their unhealthy lifestyles verses something genetic.  I have found out my sister in AZ who at the age of 60 had a stent put in her because of a partial blocked artery.  Not sure where in heart..She has lived a HORRIBLE unhealthy lifestyle...Has stopped drinking (thank GOD) but took up smoking a few years back after quitting for a number of years.  I have been told that the cartoid artery in neck on left side seems a little stiff(from check-up done on those Life-screening motorhomes that come to various cities every few months.  FUNNY THING, I had it all done in March and they said my HEART looked fine. GO FIGURE. PBANDERS, did your doctor say that there are aneuryisms that never PROGRESS????  GUESS I AM HOPING....I hope this DOC at Mayo here in Jacksonville, FL is well versed in this.  My daughter and her hubby live not too far from Cleveland, so, I am also considering going there for a second opinion as well.  Been there before when I lived in OHIO back in '95 for other issues so I know where it is.  NOT IN A GOOD NEIGHBORHOOD...so, I guess I will have my son-in-law take me.  HE IS A HUGE policeman..one less worry...haha...WELL, I am so thankful you people are OUT THERE and responding to me.  YOU ARE MY ROCKS and believe me I need all of you.  I hope you don't mind if I keep PICKING YOUR HEADS....THANKS AGAIN, Christine in Florida.......
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Hang in there, as I said to zk, the most important thing for you confidence is to find doctors you trust in and that you aren't second-guessing. As for the surgery being painful, I didn't find it to be that bad. They gave me percoset at the hospital and a prescription for vicodin at home, but I never took any of the vicodin and used only tylenol and advil. It really didn't bother me that much. I had a kidney stone earlier this year and that was about 10 times worse.

As for whether or not aneuryms progress and how fast, it depends on the person. That's why once you're over a couple of standard deviations away from the normal aorta size range (for your specific body surface area), they put you on regular monitoring. You're at 4.2 cm, considerably below the general surgical threshold of 5.0 cm, so you may have some years before you're faced with the surgical question.
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I understand your fears and frustrations.  After my sister's untimely death, I had to deal with facing it for myself.  I know it is no easy task.  There is little empathy, not because people are mean or anything but  because it is rare to know someone living with  an aneurysm.  I always said "the good thing about an aortic aneurysm is that there are no symptons and the bad thing about an aortic aneurysm is that there are no symptons!"  A sense of humor helps!   I lived with the knowledge for two years.   I tried to concentrate on living one day at a time, healthy and happy.  But it gets to you at times.  

In May when I met with the surgeon I had already been through three CT scans and met with doctors who said "no change, go home" and that was that.  Then I met with Dr. Mahan who wanted my family history, and after hearing about my sister and my cousin, he suggested surgery.  His view is that it is a gray area, these aortic aneurysms.  There are no guarantees one way or the other,  and while some feel waiting is best, he felt that in my case, surgery was the smart move.  He believed that if I had gone to Cleveland, with my family history they would do the surgery, and he did consult with them.   My guess is that some surgeons fear lawsuits especially when it is not an emergency or at a certain size.  

Anyway, at 59, I was walking daily, had quit smoking two years earlier and in good health, so my surgeon considered my risk low, and says there is a 98% success rate with no complications.  For me, the decision was easy.  Living with an aneurysm, knowing that aneurysms had killed my mother, my sister and my cousin all before they reached the age of 61, was really not a great alternative.  Fortunately my surgery was not complicated, my recovery has been speedy and mentally I am in a better place.

I do however know that some people have had aneurysms that have never progressed.  And the geneticists studying our family think it is likely that others in our family had them and did not die from them.  But for me, once I knew it was there, getting it fixed was just the better option.

I wish you both well.  Feel free to question me any time.  Also there is a great website where many, many folks who have had aneurysms, or have had family members with aneurysms, share their stories.  You might want to check it out. Here is the addy: http://www.westga.edu/~wmaples/aneurysm.html    My story is there on page 5 of the Aortic aneurysm and dissection part.  Most people there post their e-mails so if you want to talk to others privately you can.

Take care
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I should have said that the test for the Vascular form of EDS is a skin biopsy. Any doctor can do the biopsy which is then mailed to one of three clinics in the country that do the analysis.
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I am 40 years old and have known that I have Ehlers Danlos for almost 30 of those years. The only type of EDS that can be tested is the Vascular form which is the only deadly form of this disease. Aneurysm's and  dissections are common because our tissue it very weak. The other forms of EDS are diagnosed by a clinical exam, usually given by a geneticist that knows and sees more cases than any other doctor combined. They check the stretchiness of your skin, the color of your eyes for a blueish tone, check to see if you can bend your thumb back to your wrist, check your elbows and knees to see if they bend backward more than they should, and also check to see if you can touch the floor with your hands while bending over at the waist (and not bending your knees to do so)

Doctors are now finding that Ehlers Danlos is commonly seen in the Chiari Malformation patients and also Fibromuscular Dysplasia. There were family members before me that had EDS without many symptoms and then my sister and daughter who have a much milder form of this syndrome. I am totally disabled because of the pain and the dislocations. I have nerve damage and also an issue with proprioception.

It was once thought that anyone with EDS must have stretchy skin and be able to contort themselves into odd shapes. Back in the early 1900's it was documented that many of the EDS patients joined circuses in order to put food on the table. There is not enough medical documentation in text books about EDS so what the doctors learn is that we should be able to stretch our skin away several inches from our bodies and bend oddly enough to join a circus. I can do neither.

It is sad because out of the 14 doctors that I have had none of them claim to ever have had an EDS patient. I find the medical documentation to take to my doctors so that we can learn together. I have piles of information that would take doctors years to find and doctors cant commit to spending that much time and energy on each and every patient. EDS is not as rare as it was once believed to be.

I have the hyper-mobile form of EDS. EDS also has caused me to have an enlarge aortic valve, need two bladder suspensions, I bruise horrible, I do have subluxations but rarely dislocations, I have balance issues, breathing problems, a hyatle hernia, swallowing problems, I need fentenyl to get me through each day because of the pain, have eye problems, dental issues and TMJ. I could go on and on but I will stop there. EDS is a connective tissue disease. Connective tissue is throughout our body (skin, bones and even teeth). My tissue is weak so it causes my whole body to be weak but.....my sister has very minor issues. Healing problems are common in the EDS community but I heal fairly well. We are all different but share different symptoms.

If you have any further questions please fell free to ask away. No question is too personal. Oh and one last thing. Those kids that do strange contortion tricks on you tube are probably EDS patients as well. Some may know they have EDS but I would guess that most of them will never get diagnosed. My goal is to educate as many people and doctors about EDS so they can help the next EDS patient that comes into their office.
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