What The Problem Is Exactly...

Today I thought I would post about what exactly Allison has. It is a very rare disorder called Congenital Absence of the Suprarenal Level of the Inferior Vena Cava. As the diagram shows, her IVC stops at the level of the kidneys. There is an approximate 5 or 6 inch segment that isn't there and never was from birth. It is not uncommon for it
to not be diagnosed in someone until they are in their 20's-40's
because the body compensates by using other vessels called
collateral vessels. The inferior vena cava is a large 1"+ vessel that carries all the blood from the organs and lower parts of the body back to the heart for re-oxygenation. The complications from having a missing segment are chronic venous insufficiency
in the legs due to the large volume of blood trying to be pumped
back to the heart through many small vessels. There is also
discoloration of the legs with dark spots, ulcerations developing
on the legs due to poor circulation and a great deal of pain in
the legs with just normal standing and walking. Allison seems to have fatigue as well, probably due to the poor circulation. The options are to rest as much as possible (she is 18), elevate the legs regularly (again, she is 18), lose weight to reduce the pressure on the legs and wear compression stockings (again, she is 18) regularly. If you google CAIVC you will find a few documented cases of the disorder and I found only two surgical interventions being reported in the U.S. of someone with Allison's exact disorder. In both of those cases the result was 'complete resolution of symptoms'. It took me a bit of time to process in my brain that we couldn't do anything. We went to the head of vascular/endovascular surgery here in Birmingham at a great hospital and he simply said, "There is nothing I can do." And even after I read and re-read the reported cases I didn't think to put it together until mid-January that I needed to seek out those physicians who had done this surgery and ask them to help Allison. And that is what I did. I also contacted the Mayo Clinic in Rochester, Minnesota to ask if they could help Allison because they have two things there. A specialized clinic called "The Vonda Vascular Center" and an even more specialized clinic within the Vonda Clinic called "Vascular Malformation Clinic." After having her medical records and studying those and about the disorder and consulting with one another I was called by Dr. David Driscoll, head of pediatric cardiology (as there is a cardiac aspect of her disorder that we haven't had any testing done as of now) and he offered a team of Dr. Peter Gloviski (head of vascular/endovascular surgery), an interventional radiologist, a hematologist and a GYN physician to consult and treat Allison. He was very optimistic that something could be done. They worked to get a time frame of several days together when all the physicans would be in town and available and set testing for 3 days in April with surgery scheduled for Friday, April 17, 2009. The hope and thought is that they can surgically repair the problem by putting an artificial vein in to do the work of what is missing.
We are both excited and nervous. Somewhat afraid of the unknown aspects of what is coming. We just know, however, that God is protecting us and guiding us in all things as long as we put our faith and trust in Him. We are blessed with so many friends, a great family physically and a wonderful spiritual family filled with many we know and don't know. God is so good!!!!