Month: September 2011

Terry Stiles-50

Name: Terry Stiles
Email: stacy_200303@yahoo.com
Age at time of Dissection: 50
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection:9 September 2011
Tell Us Your Story:

My name is Stacy (Terry is my husband). On September 9th, 2011, I called the ambulance for Terry after noticeable signs of what seemed to be a heart attack. Terry was suffering from shortness of breath, excruciating chest and back pain, chest discomfort, cold/sweaty/clammy skin, as well as an onset of leg cramping and weakness. After the ER in our small town examined him, took blood tests and performed an EKG, they ruled out a heart attack, however had stated that they compared a couple of older EKG’s and believed Terry had suffered a heart attack some time back in 2008. He was admitted to the hospital and monitored overnight, and released in the morning. I was still very apprehensive to take him home, but did so after further persuasion from my husband AND from the hospital. They told me that since my husband was a retired Army Veteran that he needed to be seen by the Veterans Administration, who was his primary provider.


That weekend I watched my husband’s health deteriorate and immediately on Monday morning (3 days after Terry was taken by ambulance to the ER) I took him to the VA Urgent Care. AFTER 5 hours of waiting time, a brief exam AND one test, which was an EKG, he was again released into my care again. All the while I had to push him around in a wheel chair because he had no strength to walk. He told the VA Doctor that his heart didn’t feel like it was pumping blood correctly through his body, his chest still hurt and he was experiencing “heaviness” on it. He also was short of breath, very pale, almost ash in color and cold and clammy. But nonetheless, the VA sent him home. I was furious! I knew I was literally watching my husband die! I immediately picked up the phone and called a hospital in one of our bigger cities in WI, which was about an hour away from us, and set up an appointment with a Cardiologist. The soonest they could get Terry in was Thursday; another 3 days
of waiting.

I took Terry to his appointment on that Thursday and the Cardiologist admitted Terry into the hospital for “further testing and observation”. The Doctor wanted to do an MRI immediately on Terry, but because of an allergy to Shellfish, they would have to wait a day for medicine to prevent a reaction to the dye used. Instead the Dr. did an ultrasound on his heart and saw a tear. She then did an ultrasound by going down Terry’s throat and confirmed her suspicions that Terry had suffered from a large Aortic Dissection. Emergency surgery was performed and Terry pulled through it and is getting stronger and healthier with each passing day.

The Doctors told me that he shouldn’t even been able to walk through the door for help. His dissection was vast, and that 80% of people die immediately…..Terry’s dissection happened a week before they found it. It took someone who cared enough and who had the medical experience to recognize the signs and symptoms needed to diagnose my husband and save his life. I am forever grateful for the Dr. who diagnosed him and the surgeon who masterfully worked on him for over six hours. Had I left my husband’s fate in the hands of the VA, he probably wouldn’t be here with me today. The VA failed him miserably.

This has been the scariest thing I have ever been faced with in my entire life, and I can only imagine just how scared my husband must have been. Thank you so much for sharing this wonderful site. I find myself coming to it more and more and reading all the stories, and my heart, as well as my prayers goes out all of you and your family members! Thank you, thank you, thank you!

Stacy

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Ben Jones-53

Name: Ben Jones
Email: jaminjones@gmail.com
Age at time of Dissection: 53
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 13 September 2011
Tell Us Your Story: I just went through the surgery and I’m posting the entire story with great detail on my blog at www.jaminjones.com Feel free to share the link. Thanks! – ben

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

AorticDissection Survivor giving back to their community

On March 29, 2010 at the age of 44 Mark Landers survived one of the worst Aortic dissections known at this time . An Aortic dissection is a potentially life-threatening condition in which there is bleeding into and along the wall of the aorta, the major artery carrying blood out of the hear. Mark’s aneurysm extended up into his neck and down to his legs. He is fortunate to have survived.

During Mark’s first week in the Intensive Care Unit at Strong Memorial Hospital Mark received over 100 units of blood within the first week alone. Mark had over 11 surgeries, which required more blood to include amputation of his entire right leg. He spent three months in the Intensive Care Unit at Strong. Thankfully due to the wonderful staff at Strong, his strong Christian faith, the love of his immediate family and a lot of blood and blood products, Mark is alive today. Mark is in a wheelchair now, but has recently been approved for a prosthetic leg and has begun therapy to walk again! He will do it he is that determined.

Mark is the husband to Michelle Landers and father to three children-Kristin 18, Katie 16 and Josh 13. All three of Mark’s children were tested and Joshua also has an enlarged aortic root and will now require monitoring as well.
The Landers Family is extremely grateful to the staff of Strong Memorial Hospital for providing such great care to Mark during this difficult illness. We are grateful to the American Red Cross for providing the lifesaving blood for Mark. It is our hope to give back to the hospital, to the American Red Cross and to bring awareness to the disease Aortic Dissection. It is our time to give back we are so grateful for all that the community has done, the staff at Strong Memorial Hospital, the Fairport School district, and to many more people to mention. We feel this is the best way to give back.
Event: Aortic Dissection Awareness American Red Cross Blood Drive
Free car wash to every blood donor
Date: OCT 22, 2011
Location: Rapid /Perinton Express Car Wash
1200 Fairport Rd Fairport NY 14450
Phone: 585-292-6960
Sponsored By:
Perinton Express Car Wash,
Le Chase Construction
Burke Business Group
Great Clips of Rochester
Alpco Recycling
High Falls Advisors
Genesee Regional Bank
Fairport School District
Gold’s Gym
Live Radio Broadcast Day of the Event at Car Wash
Goal: To Bring awareness to the Need for Blood and to Inform community about Aortic Dissections

Pam Russell-59

Name: Pam Russell
Email: prussell@fidnet.com
Age at time of Dissection: 59
Type of Dissection: Descending
Date of Aortic Dissection: 8 July 2011
Tell Us Your Story:

Ihave Marfan Syndorme. My dad died at 46, my sister died at 62, my daughter has it and I found out when I was 28 but have tried to take care of myself. My husband became 100% disabled and my job was extremely stressful. On July 8th, I took a bite of a hamburger for lunch and felt a pain in my back.

Then it really hit and knocked me out of my chair. I told my coworker to call 911. The 1st and 2nd layers of my descending aorta had ruptured. They have gone in and put an endovascular graft at the top of the dissection and so far so good. However, I still have 8″ that are still dissected. My blood pressure cannot go above 110. I can no longer work, no stress, etc. I am living scared.


My body does not feel right, sometimes I feel like I am burning in the front of my chest, am very weak and my taste is not the same. I have an appt. on October 3rd for a second opinion. I do not go back for another cat scan until March!! How do i live with this. I
thank GOD for each day, but I want to have a life to enjoy my grandchildren. Please, if you have any suggestions or positive feedback, let me know.

My family has been wonderful, but if you have not been through it, you do not understand. Thank you

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Emergency Room Questions and what should be done for possible Aortic Dissections

I emailed a few of my good buddies for their opinions. I asked them if they were ER doctors, what would be the 3 or 4 things that they would look for or do:

Careful history, exam ( murmur, differential pulses), ECG CXR and blood test D-dimer (positive)/ cardiac enzymes (negative) then CTA. From one surgeon:
____________________________________________________________
Mostly history and physical

…Solicit complaints of chest pain or upper back pain.

EKG

If EKG nml – CT scan
____________________________________________________________

Here a good article as well: Emergency Department Care
http://emedicine.medscape.com/article/756835-overview#aw2aab6b4

Emergency Department Care

The mortality rate of patients with aortic dissection is 1-2% per hour for the first 24-48 hours. Initial therapy should begin when the diagnosis is suspected. This includes 2 large-bore intravenous lines (IVs), oxygen, respiratory monitoring, and monitoring of cardiac rhythm, blood pressure, and urine output.

Clinically, the patient must be assessed frequently for hemodynamic compromise, mental status changes, neurologic or peripheral vascular changes, and development or progression of carotid, brachial, and femoral bruits.

Aggressive management of heart rate and blood pressure should be initiated.

Beta blockers should be given initially to reduce the rate of change of blood pressure (dP/dt) and the shear forces on the aortic wall.

The target heart rate should be 60-80 beats per minute.

The target systolic blood pressure should be 100-120 mm Hg.

End organ perfusion should be evaluated. Balancing the risks of dP/dt on the aortic wall versus the benefits of acceptable end organ perfusion may be a difficult clinical decision.

Retrograde cerebral perfusion may increase the protection of the central nervous system during the arrest period.

The mortality rate from aortic arch dissections is about 10-15%, with significant neurologic complications occurring in another 10% of patients. The mortality rate is influenced by the patient’s clinical condition.

The American College of Radiology has established ACR Appropriateness Criteria for the diagnosis and treatment of suspected aortic dissection.[1]
Type A dissections

Urgent surgical intervention is required in type A dissections.

The area of the aorta with the intimal tear usually is resected and replaced with a Dacron graft.

The operative mortality rate is usually less than 10%, and serious complications are rare with ascending aortic dissections.

The development of more impermeable grafts, such as woven Dacron, collagen-impregnated Hemashield (Meadox Medicals, Oakland, NJ), aortic grafts, and gel-coated Carbo-Seal Ascending Aortic Prothesis (Sulzer CarboMedics, Austin, Tex), has greatly enhanced the surgical repair of thoracic aortic dissections.

With the introduction of profound hypothermic circulatory arrest and retrograde cerebral perfusion, the morbidity and mortality rates associated with this highly invasive surgery have decreased.

Dissections involving the arch are more complicated that those involving only the ascending aorta, because the innominate, carotid, and subclavian vessels branch from the arch. Deep hypothermic arrest usually is required. If the arrest time is less than 45 minutes, the incidence of central nervous system complications is less than 10%.

Aortic stent grafting is a challenging technique. It may prove feasible and has offered good results in a small series of patients. It may be a reasonable alternative in high-risk patients in the near future.
Type B dissections

The definitive treatment for type B dissections is less clear.

Uncomplicated distal dissections may be treated medically to control blood pressure. Distal dissections treated medically have a mortality rate that is the same as or lower than the mortality rate in patients who are treated surgically.

Surgery is reserved for distal dissections that are leaking, ruptured, or compromising blood flow to a vital organ.

Acute distal dissections in patients with Marfan syndrome usually are treated surgically.

Inability to control hypertension with medication is also an indication for surgery in patients with a distal thoracic aortic dissection.

Patients with a distal dissection are usually hypertensive, emphysematous, or older.

Long-term medical therapy involves a beta-adrenergic blocker combined with other antihypertensive medications. Avoid antihypertensives (eg, hydralazine, minoxidil) that produce a hyperdynamic response that would increase dP/dt (ie, alter the duration of P or T waves).

Survivors of surgical therapy also should receive beta-adrenergic blockers.

A series of patients with type B dissections demonstrated that aggressive use of distal perfusion, CSF drainage, and hypothermia with circulatory arrest improves early mortality and long-term survival rates.

Endovascular stenting remains an option for treatment of some type B dissections. Some studies recommend that patients with complicated acute type B dissections undergo endovascular stenting with the goal of covering the primary intimal tear.[2]
Definitive treatment

Definitive treatment involves segmental resection of the dissection, with interposition of a synthetic graft.

When thoracic dissections are associated with aortic valvular disease, replace the defective valve.

With combined reconstruction–valve replacement, the operative mortality rate is approximately 5%, with a late mortality rate of less than 10%.

Operative repair of the transverse aortic arch is technically difficult, with an operative mortality rate of 10% despite induction of hypothermic cardiocirculatory arrest.

Repair of the descending aorta is associated with a higher incidence of paraplegia than repair of other types of dissections because of interruption of segmental blood supply to the spinal cord.

The operative mortality rate is approximately 5%.

In a study by Mimoun et al of patients with Marfan syndrome who had acute aortic dissection, the patients were found to have a better event-free survival when there were no dissected portions of the aorta remaining after surgery

C Flach-49

Name: C Flach
Email: ckflach@yahoo.com
Age at time of Dissection: 49
Type of Dissection: Descending
Date of Aortic Dissection: 22 March 2010
Tell Us Your Story:

I have Marfan’s and have been watching my aortic root for 20 years, with no change in the size of my root. (My Uncle died of an abdominal aortic dissection, but on my father’s side of the family, we have only had issues with the ascending aorta.) I just moved to Washington State (from the NY City area), and got a full MRI of the aorta as a basis for my new Cardiologist at UW. Everything looked the same as it has for 20 years.

I was walking 3-4 miles 4-5 times a week, up and down medium hills, and had just arrived at the trail for my walk on 3/22/2010. Just before getting out of the car, I felt extreme pain in my kidney area of my back. Having heard from my younger brother about his kidney stones, I immediately thought I was passing a stone. I told my walking partner that we should maybe go to a “doc in a box” (an emergency care facility), so he got back in the car to take me. Immediately an excruciating pain ran up my back to between my shoulder blades, and suddenly I was having trouble breathing. Knowing that I have Marfans, and that if I had a dissection (I always thought I would ONLY have an ascending dissection), I would need to get to a hospital within minutes if I was to survive, I told my walking partner to immediately go to the hospital because I believe I was having a dissection. Luckily, we were only 3-4 minutes from a hospital, so we made it quickly. In the emergency room I kept telling
them that I had Marfans and that I was dissecting. They were patient with me, but also a little irritated at my insistence. After taking my vitals, they finally did a CAT scan and noticed the dissection, but to my surprise, it was descending. This particular hospital was not equipped to handle this type of emergency, so I was transported to a Tacoma hospital.

I was in intensive care, and the Doctor at this facility was addressing my issues and trying to stabilize me. Blood pressure was very erratic, and both my husband and I kept asking the doctor if they were in contact with my Marfan Cardiologist at UW. At one point the doctor stated that I would need surgery immediately, and again, we questioned if he was in contact with my Cardiologist. He did state that he had performed this surgery hundreds of times, however, he had never operated on a patient with Marfans. He swallowed his ego (great man and I admire him for this), and stated I would probably be better served at a Hospital in Seattle. Again (after a week in the hospital in Tacoma), I was transferred to a hospital in Seattle. They immediately addressed the issue with medication, and I stabilized after another week in a half. All together, I was in intensive care for 3 weeks. Due to medications, I was not in any pain during this time.

Over the next 5 months, I regained my strength, and even was able to start walking again. I was back to my level of fitness, and feeling great. On my follow-up checkup at 6 months, I was told that where my Aorta had dissected I had a major aneurysm, and needed surgery as soon as possible to repair it.


On December 8, 2010, I had thoracic aorta replacement (approx. 8 inches), and am thrilled to say I’m doing well. Re cooperation took about 3 months, and 6 months later, I’m back to exercising as I was prior to the dissection. I’m looking forward to my 9 month checkup to see my progress and to verify the status of my aorta – now both descending and ascending.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

September is Thoracic Aortic Aneurysm and Dissection Awareness Month

***This is a Press Release that I found while searching Google this morning. I believe this is very great information and to again, bring awareness to this disease.

September is Thoracic Aortic Aneurysm and Dissection Awareness Month (TAADAM) 2005 Theme is “Share Your Life to Save a Life”
On September 20, 2004, Doug Grieshop died suddenly when his aorta ruptured in his chest. Doug never knew that he was among an estimated 6 million Americans (up to two per cent of the population) born with bicuspid aortic valve disease. Dougs death last September, the untimely death of John Ritter in September 2003, and the continuing lack of general awareness have inspired the Bicuspid Aortic Foundation to designate September as Thoracic Aortic Aneurysm and Dissection Awareness Month. The theme for 2005 is Share Your Life to Save a Life. This September, along with other families, the Grieshops are sharing their story. They know this is what Doug would want them to do.

Email Contact Email PDF Version PDF Printer Friendly Version Print

Laguna Niguel, CA (PRWEB) August 8, 2005

Chest pain, what are its life-threatening causes? The first time Doug Grieshop felt pain in his chest, it was severe enough to send this strong young man to the hospital one evening in June 2003. When testing ruled out a heart attack, Doug was sent home the next day with medicine for anxiety. Fifteen months later, Doug was half way up a ladder when he stopped and came back down. We will never know exactly what he felt in his chest then, because in those brief moments Doug did not speak. He collapsed when he reached the ground. Others rushed to help him, but there was no response. He was pronounced dead on September 20, 2004, the day after his 33rd birthday.

Was it a heart attack that took his life so suddenly? No, heart disease was not the reason for Dougs sudden death. It was a less well-known condition, thoracic aortic aneurysm disease.

What are thoracic aortic aneurysm and dissection (TAAD)? For many, aortic dissection was defined by the death of John Ritter, who lost his life due to dissection of his ascending aorta. Recently, Fred Hoiberg, with the Minnesota Timberwolves, and Ronny Turiaf, just signed by the LA Lakers, underwent surgery for aortic root aneurysms. These medical terms describe forms of aortic disease. When the walls of a section of blood vessel become weak and thin, it results in a bulging or ballooning of the vessel that is commonly called an aneurysm. Dissection is the tearing of a blood vessels inner lining, which allows blood to leak between the layers of the vessel wall. An aneurysm may tear (dissect) or completely rupture. Under certain conditions a blood vessel may dissect even when there is no aneurysm. When it is the aorta, the main artery leading away from the heart, this bulging and tearing are counted among the most serious, life-threatening conditions. However, the diseased aorta can be successfully treated, especially when found before an emergency occurs.

How many people die from aortic disease in the chest? There were 14,818 aorta-related deaths (including both the thoracic and abdominal aorta) reported by the US National Center for Health Statistics in 2002. However, there is a concern about accurately identifying causes of death involving the chest. Today, autopsies are rarely done in the United States. Without looking inside after death, it can be difficult to distinguish between a massive heart attack and aortic dissection or rupture in the chest. The same report lists 179,509 deaths due to acute myocardial infarction that year. Since relatively few autopsies are performed, it is possible that deaths due to TAAD may have been recorded as a heart attack. Many who have survived dissection or have thoracic aneurysms can identify other family members who died suddenly with chest pain assumed to be a heart attack. Was it a heart attack, or did the aorta in the chest tear or rupture? Without autopsies we cannot be sure, but aneurysms are often present in more than one member of a family.

The reason for Doug Grieshops death is known because an autopsy was performed. Doug died when his aorta completely ruptured in his chest. Right next to the rupture site, there was evidence of an old tear, one that probably happened in June 2003. The autopsy also revealed something else. Doug had been born with a congenital condition called bicuspid aortic valve disease. The aortic valve of his heart had only two leaflets when normally there are three. Those born with this abnormal valve are at risk of developing an aneurysm in their aorta, usually where it rises from their heart. Estimated to comprise up to 2 % of the population, those with bicuspid aortic valve disease represent a large group of people prone to aortic dissection or rupture.

Today, lives need not be lost to TAAD. Risk factors are known, and there are ways to look inside the chest. Using high-resolution, contrast-enhanced scans such as CT and MRI, the entire length of the aorta can be seen and the location of an aneurysm identified. There is medicine for blood pressure, easing the stress on aortic walls. And there is corrective surgery. Advancements in techniques have dramatically lowered the risk of surgery on the aorta when performed by skilled hands. Just over a decade ago, surgery on the thoracic aorta was delayed as long as possible due to its high risk. Today however, the mortality rate for thoracic aortic surgery has declined dramatically when done in expert aortic surgery centers. Surgery on the aorta is still the most complex surgical procedure in the chest. However, in non-emergency situations, highly skilled aortic surgeons perform surgery on the ascending aorta with a risk of mortality comparable to or even less than the national average for coronary artery bypass surgery. In a subset of patients, elective aortic surgery has been done without any mortality at all in expert hands. While excellent treatment options have been developed, when undetected and untreated, thoracic aortic aneurysm and dissection continue to pose a deadly threat. There is an extreme difference in outcome between treatment and the untreated natural progression of TAAD.

Four months after Dougs death, his daughter Olivia was born. She has an older brother Grant, still a toddler. Some day they will learn about bicuspid aortic valve disease and TAAD. They will learn how their lives were forever changed by what happened one day in September. And they will be able to tell others why an awareness month for Thoracic Aortic Aneurysm and Dissection is so important. This year, even though they do not understand, along with their Mom, Stacey, they are sharing their lives, in order to save lives.

With the objective of increasing public awareness, the Bicuspid Aortic Foundation has designated September as Thoracic Aortic Aneurysm and Dissection Awareness Month. This years theme, Share Your Life to Save a Life, focuses on sharing information and personal experiences with TAAD. On the Foundations web site, http://www.bicuspidfoundation.com, there is information about TAAD, as well as accounts of those affected by it, including Doug Grieshop and his family.

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