Amber Berg-28

Name: Amber Berg
Age at time of Dissection: 28
Type of Dissection: Descending
Date of Aortic Dissection: 29 August 2010 Tell Us Your Story: I am a 28 year old Marfan’s patient in Denver Colorado and on August 29, 2010 I was 6 days post postpartum (my 2nd daughter was born via scheduled c-section on August 23, 2010). I had been advised against giving birth to a second child due to the dangers and risks with Marfan’s…of course, I didn’t listen…

My husband had just cooked a late dinner and I was sitting on the couch eating. I started feeling an odd pain between my shoulder blades, not on my back, and not on my chest. It literally felt like it was in the middle. I kept telling my husband that I felt weird and I had never had that feeling before. All of a sudden the pain shot down my back, it felt like someone was stabbing me from the inside. The pain was so intense that it took my breath away. it came in waves and was so scary. We packed up our 3 year old and our 6 day old and headed to downtown Denver to the Emergency Room. Luckily, one of the doctors that was working new a little bit about Marfan’s.

I told them that I was 6 days post postpartum, I already have a dilated aortic root (4.3 cm) and I had Marfan’s. He immediately gave me some pain meds through an IV and ordered a CT Scan. After my scan, he broke the news to me. My descending aorta had dissected. I called my parents from the hospital and told them, they raced to be at my side. Marfan’s is very present on my dad’s side of the family and both my grandfather and my auntie passed away when they had their aortic dissections. I remember them wheeling me up to the ICU and I don’t remember the next 17 days.

I was in the hospital for 20 days, I remember the last 3 days and have been told that it’s better I don’t remember the 17 earlier days. The vascular surgeons were about 5 minutes away from sending me to Houston Texas for Dr. Joseph Cosseli to perform surgery when he had suggested that they try to use medication to control my dissection first. While in the hospital I have been told that I “Freaked out” and was ripping tubes out of myself and pretty much going crazy, I don’t remember any of that. My dad did tell me that he was advised by Dr. Cosseli that this “freak out” was very common among dissection patients and that no one has been able to figure out why it happens. I have been home now since September 17, 2010 and am terrified everyday that something bad is going to happen.

I continue to have extreme pain in between my shoulder blades, not the same pain that I had that dreadful night, but severe and extreme pains. I am on a TON of blood pressure medication, take my blood pressure twice a day and send my numbers to my cardiologist once per week. On Monday October 18th I have a CT Scan schedule and then I meet with the vascular surgeon’s and my cardiologist shortly after. I pray that everything is OK and healing correctly, but I am very anxious about my appointments. I am hoping that I will not have this continuing pain for the rest of my life and that it is not a sign that something is wrong.

Eventually I will have to have 2 surgeries. One to replace my aortic root and one to replace my descending aorta. Now that I have kids and a family I am very worried about these surgeries and am overcome at times with an extreme feeling of guilt. I don’t want to leave this earth without seeing my girls grow up and I don’t want to leave my husband as a single father. Finding this website offered a bit of relief. To read other stories similar to mine and to see that I am not the only one with these feelings.

Has anyone else continued to have pain after their dissection?

Thanks for taking the time to read my story.

Amber Berg

Denver, Colorado

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  1. facebook-profile-picture

    Brian Tinsley

    Hi Amber Berg,
    Your story of Discending Aorta disection is
    read by me. I have also experienced the same pain and I can understand
    your plight.However I just want to reassure you that the worst is now
    over and you have only to look forword for betterment of your health.
    The surgeries you have to undergo are only to achieve this betterment.
    Your dissection has started from the thorasic
    aorta and now it must have extended to its limit and that is the lower
    end of aorta, till its bifercation. You are one of those lucky fellows
    whose dissection has spared very important vessels that provide blood
    to your kidneys and lower limbs. You must thank God for this favour. I
    am also as lucky as you are and to day enjoy a fairly normal life for
    a 73 years old. You have a long life ahead and I am sure God will give
    you strength to live it as normal as possible. I know yours is a
    Marfan’s syndrome and needs special attention. Believe in your doctors
    and help them to help you. I am also a doctor and tellilng you all
    this from my heart. God Bless you and your little ones.

    Dr. Vilas Bidaye

  2. Kelley Harris

    I am so glad I found your story. My very best friend just gave birth and 6 days later suffered from type B aortic dissection. She is currently in icu and being treated with medicine. My concern is that her blood pressure will not stabilize. It is fine one minute and high the next. Her son is still in the nicu and I know she is terrified.

    I will pray for you and your family, and when my friend is more stable I will make sure she reads your story and possibly gets in touch with you.

  3. Lynn Rodgers

    Oh Amber, I had only heard tidbits of what has been going on….which was from your dad to my grandma and since the moment I found out, you have been in my thoughts and prayers and my heart and soul goes out to you. I miss you and love you so much and will forever cherish our childhood memories together. Your story above leaves me with such fear for you and your family, especially your little girls. Amber stay strong, keep your chin up and continue to be the wonderful person, friend, mother, wife, daughter you are and know how much you are loved and supported. I love you. I will email you. Muaaahhhhh!!!!!

  4. Gisela Hsiao

    Hi, Amber:

    Thanks for sharing your story!

    I had Type B aortic dissection last November when my 3rd child only 17 months old, I know how you felt. Like you I did not receive a surgery only on BP controlled medication (yes, TONS of them) I still feel pain on my back now, experiencing more painful during my period!!!

    I ask my heart doctor why I had serious pain when I’m on period, he can’t explain more why… How about you?

    Gisela in Vegas

  5. Amber Berg

    Lynn~ Thank you, I love you please call or email me, we have years of catching up to do!

    I am going to email you directly. I just read your story on here and felt like I was reliving all of the emotions that I have gone through since my dissection. Please let me know if you do not receive an email from me….. it is August 3rd 2011.

  6. Lisa L.

    Hi Amber. I just read your story and you have read mine. I appreciate your thoughts and words. My dissection anniversary was 4 months on the 5th of June 2012. Crazy!!! I still have sharp pains in my shoulder (mainly left shoulder). I’ve been to the ER at the Heart Hospital once since this happened. BP was 168 / 90 (which was crazy high). I had pain but since I was sitting up talking and my EKG and breath sounds were normal, they sent me home.

    I don’t think much about it, but not sure if that’s good or bad. I find myself lifting things that are potentially dangerous for me, for example.

    Well, thanks again for responding. Please let me know how you’re doing!

    Lisa Lugo
    Type B Dissection

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