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Established April 15, 1995
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10 April 2004
It's Thursday, April 8th, 2004 and I would like to ask if there is any support group available for someone who has been diagnosed at 53 with familial aneurysms.
Shortly after my birthday in 2000 I awoke one day to a slight numbness in my face...figuring I'd slept wrong I didn't give it much thought until late afternoon when I realized the numbness was spreading into my mouth. I took myself into ER and was tested...they found that I had 3 intracranial aneurysms. The doctors decided that 2 could be coiled but that the 3rd, which was an AICA (on my brain stem) had too wide a mouth and would have to be clipped.
All this went OK though there were many subsequent problems that necessitated 3 more craniotomies and left me deaf in my right ear. The last surgery also involved removing the lower right portion of my skull and the doctors simply wrapped the nerves and muscles into a neat bundle and attached them to the back of my neck...this has left me in almost constant pain as somehow this isn't the way they should be arranged and they tend to become painful with the slightest provocation.
In 2003 I, again, took myself in and asked for a CAT scan from the neck down and was told that I had an ascending aortic aneurysm and an abdominal aneurysm. This was the first time I heard the term "familial aneurysm" and I still don't quite understand it.
In January, 2004, I had open heart surgery to repair the ascending aorta and valve. The operation seemed a success and I was home in 6 days. A couple of months later I had another CAT scan and it showed that now that my heart was pumping as it should it kind of had the effect of pumping air into an old and tired tire...my entire descending aorta was now aneurysmal and my abdominal aneurysm had grown 50% larger (4.9). Another aneurysm lower on the abdominal aorta was also discovered.
At this point I'm terrified of having to go through yet another major surgery to repair the descending aorta when it seems that no matter what I do it's just a matter of time before another aneurysm pops up. We haven't even discussed yet repairing the AAA but I suppose that's next.
While the doctors want me to come back in 3 months for another CAT scan I feel for the first time utterly despondent...I know what they're going to simply reconfirm and it seems that there isn't any hope. No one has mentioned anything that can help prevent the weakened aorta and I wonder if there is any research being done in this area. Also, it would help to talk to other people like myself as I'm having a hard time coping with all this. I feel like I've basically been sent home to die and that's just not acceptable.
Update: 12 February 2007
I'll be having a 6.5 abdominal aneurysm (it's way higher than normal) repaired by Dr. Kasirajan at Emory. A week after that surgery I'll be having the descending thoracic aorta repaired. Are their other members who have had such extensive thoracic/abdominal surgeries? If so, I would love to hear from them. All this within the next few weeks.
Update: 25 November 2007
Just wanted to let you know that my wife Maureen passed away on Oct 18th. Thank you for your past concern and friendship to her. ~Jerry Sutton
© Copyright 2006 M. Sutton
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