Journey to Awareness

I mentioned in my last post that my syrinx is considered idiopathic and my current doctor is attempting to determine the cause. He suggested the possibility of a spinal dural arteriovenous fistula. Say what? He explained it all in his office but I kind of zoned out. I really only remember hearing something like this – fistula, embolization, MRA. So what is a spinal dural arteriovenous fistula? I found the most comprehensive definition on neorangio.org

Fistula means abnormal connection between two structures that are normally not connected. An arteriovenous fistula is therefore an abnormal connection between an artery and a vein. Any part of the body can have a fistula. A spinal fistula, particularly spinal dural fistula, is usually an abnormal connection between an artery and a vein that are located near the covering of the spinal cord. This covering is called dura, and so the full name “Spinal dural arteriovenous fistula.” When a fistula forms, blood from an artery under high pressure and flow goes directly into a vein, which is a low pressure and low flow structure. Even though the dural fistula is usually not directly on or within the spinal cord, it nevertheless causes dysfunction of the spinal cord by congesting the venous system. 

I was only able to locate one article where the association of spinal dural arteriovenous fistula and SM were found in a 60 year old male, but it could not be determined if the relation was coincidental or causative. However, he did undergo surgery on the fistula and symptoms significantly improved.

Well my MRA is schedule this week and this will be the fourth time in about nine months that I’ll be going “in the tube.” An MRA is the same procedure as an MRI, only images of your veins and arteries are being taken. I’m extremely claustrophobic, but I’ve developed a trick for managing this without heavy sedation. I explain to the technician that I absolutely can NOT see the MRI “tube.” I walk in the room with my eyes closed, led by the hand. I haven’t met a technician yet who has protested. I NEVER open my eyes throughout the entire test, insisting on keeping them closed and led by the hand out of the room as well. Who knows when I’ll have to go back? If I see the small enclosed space of the machine, I’ll never get in it. Besides, that thing scares me in other ways. It constantly pulsates and, to me, sounds exactly like a really loud fetal heartbeat. Creepy.

But I digress. The most important part that should be pointed out is what to do in there! You can’t move and it’s a really, really, really, long time. So I pray. I picture a big, wide open blue sky above me and I pray. Although it would be easy to pray for myself, I don’t. I find it helps with the claustrophobia to take the focus OFF of self so I pray about others, starting with those closest to me and then whatever comes to mind. I pray for others who suffer with SM. This Friday, in the tube, I’ll be praying for YOU.

Journey with me.

 

 

 

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