I am a 49 year old male (as of May 11, 1998), married to wonderful gal and blessed with four children, aged 21 months to 14 years. I graduated University of Virginia in 1971 with a BA in Psychology and began a 23 year career as an Army Infantry Officer which culminated with participation in Desert Storm and then retirement as a Lieutenant Colonel in 1993. Suffered the dissected aneurysm in May 1995. Currently work as a senior military analyst for a defense contractor in Suffolk, Virginia.
8 May 1996
I, too, experienced and survived an aorta dissection. I was swimming laps over the lunch hour and felt a huge pain that began in the central chest area, shot up through my sinuses, and back around to my central back. A severe, dull, throbbing pain remained across the width of my back. Not knowing the extent of the problem, but feeling terrible, with the beginnings of nausea, I got out of the pool, dressed, and went back to work. But the pain soon drove me to the doctor, an internist, who is my primary care physician in an HMO. My complaint was severe pain in the mid-back region. He took X-Rays, diagnosed a strained back, and prescribed rest and Motrin. I drove home and almost passed out on the way. I went to bed with a heating pad, laid awake all night, and went back to the doctor in the morning. He gave me an EKG, which was normal and made the same diagnosis -- a strained back. I noticed when I walked that my left leg felt enormously "tired." That's the best way I can describe it.
This happened on Wednesday, May 10th, 1995. After 3 and a half days in pain (I didn't go to work), on Saturday, May 13th, I was laying in bed reading. My heart began to race, and I experienced a crushing pain in the chest. I could hardly breathe and became nauseous and knew instantly that this was a "911 situation." My wife was out so I called, gasped out my address, and the medics came and took me to a local hospital, where they administered the little pill that relieves angina pain. My blood pressure was up. Two more EKGs were normal. They were going to keep me overnight for observation. Finally someone called my primary care physician. His on-call substitute arrived, a family care doctor. She ordered an MRI, When it disclosed an enlarged heart she called in a cardiologist -- Dr. Vernon Francis of Tidewater Heart Specialists. Dr. Francis put severe chest and back pain together with a normal EKG and suspected an aneurysm. He had me flown by helicopter to Norfolk Sentara General Hospital (about 20 miles away). This was now about midnight on Saturday, May 13th, 1995. He arrived after a 90 mph drive from the local hospital in Newport News Virginia and performed a heart catheterization, where he found the dissection. It began at the aortic valve and went up the ascending aorta. He assembled the surgical team and Dr. Lenox Baker opened me up early on the morning of May 14th 1995. They replaced the valve with a mechanical heart valve and the ascending aorta with a Dacron tube. I was released from the hospital on Friday, May 19th 1995 and went back to work in about two months.
I, too, had been fairly physically active and attribute that, after God, with my survival. The doctors said that survival in those circumstances was most rare. They normally discover what would have been the cause of death on the autopsy table. I have never recovered my previous level of physical activity, although the doctors placed very few physical limitations on me. But I generally feel poorly. I tire easily, take medications for high blood pressure, and take the anti-clotting medication Coumadin. My heart beat is a pronounced throb -- the cardiologist says that the blood flowing through the mechanical valve creates a greater "shock" against the vascular walls. The blood pressure medication carries all sorts of side effects. I continue to get periodic back pain. I have resumed swimming as the only exercise that doesn't hurt. Everything else hurts. I experience what I can only describe as periodic "pre-blackout" episodes, where I get bands of spots at the edges of my vision for about half an hour and am left with a headache for several hours. My primary care physician prescribed a CAT scan of my brain but there was no evidence of cranial wrongdoing. I get bi-weekly blood tests to monitor my blood clotting level.
But I am alive and still with my family. Fortunately, I was a member of the Sentara Health Plan. They paid every cent of the hospital care and follow up care. I changed employers and the new insurance only pays 90%. I am retired military so I get all my medications free from the military pharmacy. The Lord has been most good to us.
But I continually fear that every symptom is the precursor to another dissection. Every twitch and twinge, and I get a lot more of them now than I used to. I plague the doctors now and they give me tests but most things are unrelated, except that I recover much more slowly.
Update 6 Jan 98
I have long owed the group a follow-up report on my condition. Since my original narrative was posted I have continued to recover. While I have yet to regain my former strength and vigor I am confident that my health is good and that I have the physical capacity to do whatever I want or need to. Any hold up is of my own making, in that I have allowed the stresses and pressures of life to take the place of priorities in exercise and healthy eating. During the operation and immediate recovery period I dropped about 15 pounds. I gained all those back, plus about 10-15 more! I stopped exercising regularly, having just enough energy to maintain a demanding job and help look after four kids, aged 14 years to 18 months. I am now in the beginning phases of yet another resolution to get fit, spiritually, mentally, and physically. Pray that this time it takes.
The good news is that there is no physical barrier to as much progress as I want to make. My last several examinations have shown satisfactory function of the St. Jude's valve. My cardiologist encourages me to exercise and places no restrictions, other than the lifting of heavy weights.
There are some lingering effects of the operation. First, I continue to get occasional pain in my upper middle back. It is more an annoyance than a real hindrance, though deeper than a surface muscle strain, and I counteract it when necessary with Tylenol. Neither my primary care physician (an internist) nor my cardiologist can pinpoint a cause, but aren't concerned. It doesn't keep me from any activity. Second, I continue to get occasional episodes of what I think is ophthalmic migraine, which manifests itself in bands of spots around the edges of vision, usually in one eye. There is no pain during the event but I am left with a slight residual headache for several hours. This happens perhaps once a month and seems to accompany times of more than normal fatigue, such as when I have just exercised or gotten a poor night of sleep. Again, the cardiologist, PCP, and even the ophthalmologist are not concerned. The ophthalmologist explains that the condition is fairly common, but none of them can explain why I get them now and never did prior to the operation. Thirdly, I get bouts of overall tiredness, which I attribute largely to the regimen of blood pressure and anticoagulant medication. I take daily doses of atenolol (Tenorin), amlodipine (Norvasc), Warfarin (Coumadin), and Doxazosin (Cardura). Getting more sleep is a challenge due to some hyperactivity and developmental delays in at least two and possibly three of our four children. It causes them to wake frequently during the night, often requiring that we get up to put them back to bed. And of course there are those occasional NCAA final four and championship finishes that are too good to pass up. As for the medications, my cardiologist states that my blood clotting time and blood pressure are where he wants them, so if I can cope with side effects he doesn't want to change the medicine or dosage. If anyone has any insight into these effects I'd appreciate it.
I am convinced that these conditions will be somewhat alleviated, or at least not exacerbated, if I continue to work to lose that 30-40 (even 50) pounds that I need to and continue to improve my aerobic fitness. Pray that I will — it can only help — and thank the Lord that I am able. I know that I am hugely blessed even as I am. It's up to me to be a good steward of what I've been given. I hope to report success and its beneficial effects in another year or so.
I have greatly enjoyed corresponding with many of you and with others who seek information on our fairly unique club -- those who have survived an aneurysm -- and the even smaller number who have survived a dissected aneurysm. Not a club we join by choice, but one in whose membership there is an instant and rewarding camaraderie. So thanks for your listening and continued support.
Update 10 Mar 98
Since my last update there have been some disturbing developments. In March of this year (1998) I began to experience marked and sustained abdominal distension, bloating, and minor cramping. It felt like there was a small air bladder right at my belt line that wouldn't go away. Abdominal tenderness extended from the area of the belt line down to the pelvis all the way to my testicles and back up to the stomach. The mild pain or cramping increased when I ate, and was especially pronounced if I ate a large meal.
I went to my primary care physician who diagnosed prostatitis. When antibiotics had no effect he sent me to a urologist who diagnosed epididimitis (sp?). When additional antibiotics still had no effect I returned to my primary care physician to stress that it felt like something was wrong inside my abdominal cavity. All the original symptoms remained the same. He agreed to order a CT scan.
The CT scan showed two aneurysms - a 3.4 cm AAA and a 3.4 cm right iliac aneurysm. So the primary care physician referred me to a vascular surgeon. Due to a mix up the surgeon's less experienced partner saw me and recommended corrective surgery within the month. I had read about the endovascular procedure and wanted an evaluation for that option. The surgeon I was seeing knew about that procedure, but thought it wasn't being done in our area. He stressed the experimental nature of the procedure and the lack of long term follow up statistics.
I sought names for a second opinion from my cardiologist and he recommended that I return to Norfolk General Hospital, where the aneurysm and valve repair was done three years before. He gave me the name of a respected surgeon affiliated with that hospital. When I finally got in to see this surgeon I found that the endovascular procedure was indeed done at Norfolk General and that he was one of the few surgeons in the area authorized to perform it. He sent my record to Endovascular Technologies, in California, for evaluation. In the meantime he ordered an arteriogram, and then another CT scan.
When all the results were in he informed me that my aorta is dissected from the aortic arch to the abdominal area, where the two aneurysms are located. The dissection is established into true and false "lumens" (channels), and that the false lumen is in places larger than the true lumen! In fact, the false lumen is the aortic channel that is feeding some major organs and areas of the torso and abdominal/pelvic area.
He suspected that this complex physiology had been in place for some time and recommended against surgery. If it is stable, he said, we may cause more problems than we would cure by operating now. He left me with the sense that any operation would be very difficult and may cause death. He wanted to wait six months, do another CT scan, and evaluate options from there.
Endovascular Technologies evaluated that my physiology was unsuitable for the endovascular procedure, due to the positioning of renal arteries relative to the aneurysms.
Since none of this addressed my abdominal discomfort, I saw an endoenterologist. Based on my history he felt that my abdominal problems were related to blood flow, or insufficient supply thereof, to the bowel, and recommended that the vascular surgeon rethink his course of treatment. He thinks the vascular surgeon should do another arteriogram to better examine the blood supply to the bowel.
When I informed the vascular surgeon of this opinion, he stated that the endoenterologist just didn't understand the physiology. He said that, while he would certainly see me again if I wanted, he didn't think it would change his own recommendation.
So I am left with a distended and continuously cramping abdomen and pelvic area, a (inoperable?) dissected aorta, and two aneurysms. And doctors who, while they may be right in a cautious approach, leave me without much hope. Remember, because of an artificial valve I live on coumadin. The prospects of emergency repair of a ruptured aneurysm while filled with this drug are frightening.
Does anyone have information on life with a dissected aorta - its effects, implications, and prospects? Are there individuals or institutions that have significant experience in this kind of condition? I don't have much money for travel or to undergo additional tests all over the place, but I do have the results of two CT scans and an artogram, and the vascular surgeon's report. Any ideas?
Update Nov 1998
Due to my continuing complaints and questions, my vascular surgeon agreed to conduct an abdominal sonogram to determine the adequacy of my mesenteric blood supply. The procedure involved ingesting a milkshake like fluid and watching the mesenteric reaction. Afterwards he stated that the sonogram provided the best view yet of the aortic dissection, all the way from the arch to the abdomen. It confirmed that true and false lumens were firmly established, that the false lumen does, in fact, provide blood to some major areas of the trunk and abdomen, and that the two aneurysms (abdominal and right iliac) derive from the dissection. He stated that there does appear to be adequate mesenteric blood flow. None of this explains the abdominal discomfort, which has been with me so long now that I am simply used to it. He recommends against surgery until we can confirm, via subsequent CT scans, that the aneurysms are growing.
Update March 1999
Latest CT scan shows no change in the size of the aneurysms or the configuration of the dissection. All the same as before. Abdominal discomfort - mild pain, especially after eating, and cramping remain. Doctor recommended another CT scan in six months. Still prefers not to operate unless things get worse. Works for me. Said blood pressure was good but wants me to lose 50 pounds - from 240 down to 190. Yikes! Well, I know he's right. Just always seems that tomorrow's soon enough to start getting serious about it. One correspondent - a fellow dissection victim - is sending a Mayo Clinic Heart Diet. Another checks in often to monitor progress, and many send encouragement.
One thing about it. Living with this thing keeps me ever close to God - faith in His sovereignty creates a peace that I could not otherwise imagine. And were it not for this condition, I would never have encountered through this website the dozens of fine folks, fellow victims and their family members, who have been generous with their encouragement and support. In spite of most of what you read in the newspapers, there is goodness and courage in the land!
Update: 26 Sep 2002
To review, I had a dissecting aneurysm in May 1995, repaired under emergency conditions. I also got a St. Judes valve. That left me with a spiraling dissection of the aorta from the arch to the groin. I actually did not know about the dissection until 1998, when abdominal discomfort prompted another CT scan, which showed not only the dissection, but also an AAA (3.5 cm) and bulges in both iliac arteries. Several CT scans since then have shown the dissection and aneurysms to be relatively stable.
Since my last report I moved from Virginia to Florida. It's no fun getting new doctors. Not their fault, it's just a chore matching up insurance with the range of doctors and the expertise I need, and then going through medical history a thousand times, and getting the batteries of local tests, scans, and grams that the doctors need to make them feel comfortable with you as a patient. But our network was helpful in finding the right physicians.
I had CT scans in March and September 2002. They both showed no change in the dissection and AAA. The aneurysm in the right iliac artery remains at 3.2 cm. The vascular surgeon advises that if it gets any bigger we'll have to consider action. So, another scan in three months.
I was previously evaluated for a stent procedure, and did not make the cut, so to speak. But the surgeon down here says it wouldn't hurt to evaluate again. Apparently, Florida Hospital is a regional center for the stent procedures. There are new stents and procedures all the time. He thinks that might be a possibility to fix the iliac artery, without having to do the AAA.
So there you have it. Essentially stable from previous exams, meaning more operations are not terribly imminent. One doctor said I'd have to have it all done sometime in the next 15 years or so, but probably not in the next 2 or 3.
So now I have to keep on getting on with my life. In addition to the range of normal activity associated with working, raising four great children, and sending a great wife to grad school (a hedge, no doubt, against my unforecasted demise), I've decided to get a SCUBA re-certification (my last dive was well before all this business began). As you might expect, the doctors are reluctant to sign off on the Divers' Physical. After exhaustive tests and reviews, they can't give me any specific reason, other than they think people like us are better off playing checkers than doing something like SCUBA diving. While I will ultimately make my own determination, I am interested in any information the group may have on hyperbaric implications relative to dissection and aneurysm. That is, the effects of pressure and air gases under pressure on aneurysmal physiology (does that sound fancy, or what? I made it up myself.)
I've already contacted DAN (the Divers Alert Network) for a referral. That's how I got my cardiologist. He's willing to give his permission, but not without the vascular surgeon's concurrence. And the vascular guy is very wary, as I would be in his position. Florida malpractice insurance is a killer. So I may not get formal approval, but at least they can't point to a specific reason why I shouldn't dive, within careful, recreational diving limits. Does anyone out there have any more information on this issue?
And does anyone have any new information on operative prospects for AAA complicated by a spiraling dissection?
As always, thanks to everyone who's corresponded over the years. As I told a recent member, we survivors look normal, and we don't advertise our condition. After our immediate family gets used to our condition (with deepest sympathies to families who have lost loved ones to this thing), it does get lonely at times, as if we have a secret that we can't share with anyone (Oh, you have an aneurysm? What's that? (Yawn) Please pass the ketchup). How can you adequately describe it? So, the support of and conversation with people in our group is always welcome.
Discussion, comments, or questions: Chuck Burgdorf
© Copyright 1996 Chuck