Comments for AorticDissection.com

Comment on Rod Abidd-49 by Laurie Haas

Laurie Haas — Tue, 22 May 2012 00:03:42 +0000

Rod,
Just know that it takes time….sometimes more time than you would expect. I’m just now about 2 years out and am finally feeling 80% of my old self again. Hang in there and follow the doctors orders!!

Comment on Howard Hehrer-51 by Howard Hehrer

Howard Hehrer — Mon, 21 May 2012 11:48:19 +0000

Lloyd, what are your qualifications to advise people to not take the medication their doctor has prescribed for them? I don’t want to be rude but if you are going to make statements like that you should provide background & backup. If you are aware of studies that substantiate this claim please include a link to them so I can share with my doctor. Thanks.

Comment on JIM STERNOWSKI-67 (told by friend) by Julie Schumacher

Julie Schumacher — Sat, 19 May 2012 12:09:12 +0000

Dear Jim’s friend~

Thank you for sharing his story. I have been reading all the success stories on here of aortic dissections and was told that most never make it to a hospital. My 51 year old brother died in August of 2011 of a Type A aortic dissection and it was all very surreal for my family and me—it still is… and I still have many questions.

Comment on Howard Hehrer-51 by Lloyd Jones

Lloyd Jones — Sat, 19 May 2012 02:10:57 +0000

I have reservationa about Topral used as a Bp aid. Another person I cautioned to get off of this med and within a year they encounted a need for a heart replacement. We held a home going service for his person this past February. She never took my advise.

Comment on Barbara White-67 by JIM STERNOWSKI

JIM STERNOWSKI — Fri, 18 May 2012 13:11:51 +0000

This started Wednesday, May 17, 2012, 12:30 pm to a very good friend same age, 67. Went to work, felt great. At lunch, he experienced a severe pain in his ear which led down his neck. He took an aspirin. Felt light headed, went to the nurse…blood pressure was 70 over 40. Sent him to a local ER where he was eventually diagnosed with a disected aorta. Surgeon called in said… the procedure is 90% successful. Wife and friend agreed to surgery. After 13 hours in surgery, my friend passed away, in less than 24 hours from start to finish. His body was his chapel. He was a picture of good health and condition. Needless to say all are shocked.

Comment on First patient treated with Medtronic’s Valiant thoracic stent graft in aortic dissection trial by chad jandrew

chad jandrew — Tue, 15 May 2012 15:13:14 +0000

Hello,

My wife was hit by a car July 25th of 2010.
She had a transected aorta that was surgically repaired with a stent,but it was used outside the aorta. This was a new technique used by the surgeon Dr Nunez of hershey medical center in Pennsylvania. Dr Nunez is an amazing man, he saved my wife’s life. I have been told that she is only 1 of
3 people in the world with this type of stent.
Iam happy to say that she is doing fantastic and she is back to a normal life and also we are expecting our first child in a matter of days. The doctors even told us that we can have a normal vaginal birth if we wanted , but we are doing a c section just to be cautious.

What I can say for sure

Comment on Survived an Aortic Transection by Lori Boller

Lori Boller — Tue, 15 May 2012 12:02:37 +0000

Follow-up from previous post: My husband had a follow-up CT scan and visit with his vascular doctor in Feb. Everything looks great, doesn’t want to see him for another 2 years. He is not on any meds, but his primary Dr. is watching his blood pressure, which he never had a problem with before the accident. He has to take antibiotics before any dental work. They told him to be aware of any left arm pain or numbness because the graft partially covers the artery that comes off the aorta and feeds the left arm. I’m glad to hear of others surviving this injury cuz it’s scary stuff.

Comment on Amy Kionis-29 by Germaine Loran

Germaine Loran — Tue, 15 May 2012 00:49:27 +0000

could I have more info on Marfans Syndrome and Skin inflammation Infection???around ankle following Dr.Debacky procedure to 100% unblock femoral artery in rt.leg -left leg still to be done as well as dysecting aortal aneurysm now @ 4cmsx5-2 cms,Had Debacky procedure done March 6th and other than very itchy pimply outbreak ,and some swelling,recovery has been remarkable

Comment on Amy Kionis-29 by Amber Berg

Amber Berg — Mon, 14 May 2012 19:47:53 +0000

Amy,
I understand what you are going through. My descending aorta dissected 6 days after having my 2nd daughter via c-section. I have Marfan Syndrome and knew this was a possibility but I had my daughter anyway. I have not had my descending aorta replaced yet either. It is currently over 4 cm but not yet at 5. The reason for not doing the surgery at this point is because the surgery is a serious one and they will not perform the surgery until the risk of not having it out weighs the risk of having it. I went to Houston and met with Dr. Joseph Coselli (who is by far one of the best doctors for that surgery in the country). If and when I need the surgery he will do it. I’ve had multiplt (5+) different vascular surgeons and 3 different cardiologists tell me that Dr. Coselli is the “go to guy” for this serious surgery.
Now, since the night I dissected I have had a horrible pain in between my shoulderbaldes and down to my lower back. The pain is constant, debilitating and drives me crazy. It’s not as serious as when I actually dissected but it is also not your “run of the mill” back pain. No one, including Dr. Coselli could tell me why I was still having pain a year after my dissection. (I dissected August 29, 2010). I have been told that some people do experience pain after their dissection, sometimes it goes away as quick and sudden as it came and some people have said that the pain did not go away until they had surgery. I was advised that in most cases it goes away on it’s own and because of the seriousness of the surgery and the fact that there is no guarantee that the surgery will fix the pain that cannot be a reason to perform the surgery. I have gone through multiple pain medications (partly because my body has always had a really high tolerance for medication). Eventually Fentanyl patches worked the best with percocet for breakthrough pain. The only thing with that is that I have read and heard that getting off of Fentanyl is a pain so I have made the decision to lower my dosage and soon get off of the Fentanyl and just deal with the pain. I’m 20 months out from my dissection and the pain is still there but not as serious.
In the next 8 weeks or so I will be having a metal valve placed in my heart and my aoritc root replaced….due to Marfan’s and am nervous about what the recovery from that will be like…
Not sure if you are experiencing the same things I did but the emotional stress and anguish when recovering from my dissection was horrible. I was a wreck, constantly paranoid that something was going to happen, not a good wife, not a good mother and not active in my family (at least, that’s how i felt), emotional rollercoaster doesn’t even come close to explaining how I felt. Depressed is no where close to a good enough explaination. It was the hardest thing I’ve gone through in my life. This website helped me a lot. If you ever need someone to talk to or want to ask questions or compare notes as to what you have been through please feel free to email me. It took a lot of support and a long time for me to “get back to normal” so I am more than happy to lend a listening ear or share some stories and information.

I wish you and your family all the best,
Amber Berg, Denver, CO
ambersinlove@yahoo.com

Comment on Survived an Aortic Transection by Paul Streffon

Paul Streffon — Mon, 14 May 2012 19:46:27 +0000

I too had an aortic graft after being hit by a Suburban. That was back on 12/24/1997. Things have been pretty “normal” after I got off the beta blockers. They really had me depressed, losing my short term memory and they were causing panic attacks with adrenalin rushes. Now I am on lisenapril but just for high blood pressure not for the graft. Please consult your doctor if you are having problems with your medicine. You may be on it a long time. There are many choices.

Next week I go back for a check, which made me start Googling the topic again. I have been looking for other survivors and am glad to see that I am not alone anymore.

There doesn’t seem to be any studies on survivors, maybe because we are so few.

I am happy to share what I know.