I have been looking at this site since Feb and was in debate as to whether I should share my story. But what amazes me is there are indeed as many stories of aneurysm's as there are people.
I am a 41 year old female who was found to have an ascending aortic aneurysm with a debatable size of anywhere from around 4 to 5 cm depending on who reads the CT.
I went to my GP in Feb complaining that I had had a very sharp left sided pain in the middle of the night a few weeks before and it left me with a residual pain there ever since. After several tests they found the aneurysm and said that 'well its not stress so just get on with your life'. The first CT reports that it is 5 X 4 cm and subsequent ones say 'around 4'.
I have been back and forth to the GP about this pain in my chest which they now say is definitely not 'ischemic' in nature. I also have a very very painful left shoulder that most often feels as if the one corner will 'blow off'.
After reading my own CT reports and questioning my GP I have found that I have a second aneurysm on the left subclavian artery.
Now the protocol for repair of the TAA is around 5.5 - 6 cm and the repair of the subclavian is 2 cm and mine is at 1.7 cm.
So here I sit in northern Canada a nurse for 20+ years with this information. By the way I have been a nurse manager for a long term care ward that manages CVA's and TIA's and MI's and aneurysms for over 5 years
My surgeon's tells to just get on with life and to go see a chiropractor for the pain in my chest and shoulder.
MY LIFE consists of 4 teenagers, a dog and a cat, 62 patients and 30+ staff. I am very hesitant to go back to work because a) I really don't feel well, the pain is quite significant and the beta blockers drag me right down and b) I don't believe it is prudent to walk back into a very stressful work environment when I know that I have 2 aneurysm's sitting right on top of my heart.
Some advise I receive says to go to another province over for another opinion. If protocol is protocol what would be the point when the doctors don't believe me that the pain is related to the aneurysm. They want to do another CT in six months.
For me to go to the States at Rochester it would be at least $90,000 $100,000.00 that I DO NOT have.
Our second daughter graduated this spring and I found I had a lot of fear that I would not see the youngest who is 13 graduate.
There also is debate about the genetic component that the doctors won't talk about; my father, grandfather and uncle all died very young of cerebral aneurysms.
I don't seem to fit into the normal protocol; I'm not a male 50 - 70 years old the group that they designed the protocol for but they will treat me with this. It is kind of like developing a protocol for growing oranges and planting a tomato and expecting it to be a citrus.
I appreciate the stories everyone has written and respect the courage you need to manage ill health. I am not sure what to do next in order to 'get on with my life'.
Update: 25 Oct 2002
Well I am not sure if I am excited or just scared. I have found a female cardio thoracic surgeon who will see me in another province. I have an appointment with her and a cardiologist on December 10th.
I have since seen a neurologist here who believes as well as having the 2 aneurysms on my heart I am at quite a risk for a brain aneurysm. He has requested a brain MRI as soon as possible.
The rhuematoidologist who I saw regarding the pain (awful) that I have in my shoulder said his recommendation is not to rule out Takysaku's arteritis.
So we are six months into this now and here I sit. There seems to be as many opinions as there belly buttons.
Am so wishing that this trip in December will give us some concrete plan in which I can start to put this back together.
Warm regards;
Update: 3 Jan 2003
I indeed saw my female cardio-thoracic surgeon on Dec 10th and was admitted to Calgary Foothills hospital the same day. After a very through assessment I was found to indeed have a ascending aortic aneurysm, subclavian artery aneurysm, a bicuspid valve, heart murmur and Ehlers-Danlos Syndrome a rare connective tissue disorder.
The decision was made to repair the ascending aortic aneurysm and I was taken to surgery Dec 19th. During surgery it was found that I had a 3rd aneurysm lying on the under side of my heart Repair of both was done successfully and I flew home 6 days ago.
I am feeling weak and have a good recovery ahead of me. There were a couple of post op complications that slowed me down abit. All in all I am feeling powerfully grateful that a; the surgery was done and be; that I survived it.
Not enough can be said about seeking out medical advise that you yourself feel comfortable and trustworthy with. Seek a second and a third opinion if need be. The team that cared for me were respectful, professional, kindly supportive and efficient. This is all such scary business and it is so important to find medical help that you feel safe with.
I look forward to recovery with a full and grateful heart. I will need to be followed by a endovascular surgeon to repair the subclavian artery aneurysm and the valve will eventually need to be repaired. The terrible cloud of fear has lifted and the pressure in my chest is gone.
The kind people of this group I owe a huge debt of gratitude for their kind emails, gentle support. Each day I get a little stronger and I look to the future with hope.
Many thanks.
Update: 25 Jun 2003
How nice to have an update at all!!
Six months now since my cardiac repair and am in the stages of physical rehab to return to my work. Cardio rehab and aquasize each 3 times a week are part of my life. Getting stronger physically and emotionally.
The subclavian artery aneurysm is 2.3 and they will repair it at about 3 cm. and of course we will watch the bicuspid valve infinitum.
Such a blessing to put this year behind me or should I say behind us. Those of us that have blessed with spouses to walk with on the perilous journey know what fortune we have found. My husband (a.k.a. nurse, caregiver, friend) has walked this journey right beside me. To the caregivers, children and friends that share this path with us please know we could never survive without the strength, love and hope gleaned from your precious existence. Thank you.
I will see my surgeon again in December and make a plan as to where we go from there, right now I will live each day.