Personal Stories: Bob Benesch

My name is Beverly Jebe. My fathers name is Bob Benesch. In September of 2000, my dad suffered an aortic dissection. It begins at the left subclavian artery and descends to the bifurcation. Fortunately, it was diagnosed correctly in the ER and he was treated appropriately. He spent several days in ICU as they kept him sedated and controlled his BP. We have gone almost 4 years now uneventfully. My dad sees his cardiovascular surgeon every 6 months and has a CAT scan. In March, they were told that the dissection had become an aneurysm as it had grown from 3 cm to 3.5 cm. They weren't overly concerned as their doctor wasn't. Then two weeks ago, my Dad began having back pain, and his Dr insisted that he go to the ER. They did another CAT scan and told him that it had grown from 3.5cm to 5 cm. My parents were aware that they start talking surgery at 5.5 cm., so this news was disturbing and my dad's BP went way up. He spent two days in ICU getting it under control.

The surgeon he had during this last episode was not his regular Dr, as he was on vacation. This surgeon did not think that my Dad's back pain was due to the dissection but instead from heavy lifting. Well, my Dad had not done any heavy lifting, but that is still what went in all the reports. We are concerned that the back pain came from the recent swelling of the dissection. We have found out subsequently, that the thoracic section of the aorta has been at 5 cm since the original incident. But that the abdominal section is what has grown recently.

The Dr my Dad saw in the ER said that he would need to have surgery in the next two months and he referred us to Dr. Bryan Mahan in Colorado Springs. We just met with Dr. Mahan yesterday and he had a different view. He explained the risks involved with surgery - 30% chance of paralysis and 10% chance of death - and said that he would not operate on my Dad. He said that he should continue with "watchful waiting". Of course, he cannot guarantee that the aneurysm will not rupture in the meantime, but that the odds are more in favor of not doing elective surgery. He explained that if it started leaking or became an emergency, that he would do the surgery. But that if my Dad wanted to do it electively, that he should go to Dr. Joseph Cosselli in Houston, TX. He said that he is the very best, doing these surgeries on an almost daily basis.

We are very apprehensive about surgery, but also about not doing anything. I have read that only 50% of people who have an aortic dissection are alive after 5 years. My dad is going on 4 years. Those do not seem like good odds either.

In Kim Putnam's personal story she refers to you having had surgery. Have you had surgery? When and where did you have it? How did it go? What advice do you have for us?

Thank you so much for posting this website. It's very helpful to read others stories and know that we are not alone.

Bev Jebe

UPDATE: 9/1/2004

Here is an update on my father, Bob Benesch. When I last wrote we were fretting about our doctor's advice to continue with watchful waiting. My dad had his records sent to Dr. Cosselli in Houston assuming that he would eventually have to have surgery. While we were waiting to hear from Dr. Cosselli, we happened across information about a great doctor and hospital in Arizona. Dr. Dietrich at the Arizona Heart Institute in Phoenix had been repairing thoracic aneurysms with non-invasive surgery for about two years now. My dad began with an aortic dissection four years ago and as the blood pooled in the false lumen it began to cause an aneurysm. His thoracic aneurysm was at about 5 cm. The other surgeons we spoke to said they wouldn't operate until it reached 6 cm. But the Heart Institute will consider surgery at 4 cm. We went to Arizona (from Colorado) on Aug 16. Dr. Dietrich ran his own series of extensive tests and on Aug. 18 they performed the surgery. They went up through the arteries in the groin and placed an endoluminal graft from the top of the arch down about 15 cm. They also had to put a stent in his carotid artery as the graft had to be placed right next to it. The circulation to the left subclavian artery was cut off, but they said other arteries would compensate and so far they have. The surgery took about two hours and went very well. My dad was in recovery for about 24 hours after that and then moved to a regular room for two days. He was back in Colorado a week after his surgery!

We are so grateful that we were led to this hospital and this procedure. It is still in the early stages so there is no long term prognosis available, but the graft seems to have collapsed the false lumen and taken the pressure off the aorta. We do not know if Bob will return to work. His job involves heavy lifting and that doesn't seem like a good thing to be doing.

I don't know if the procedure is for everyone. But for those out there with type B Dissections who have been told to continue with "watchful waiting", you should look into this clinic. Everyone was wonderful to work with from the office staff to the surgeons.

I hope we are on the road to a more restful life. My dad will continue with regular CT scans as they monitor the graft, and will have to continue to control his BP. I hope this info. will benefit someone out there.

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Phone: 206-550-7957
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