I will never forget how I felt when we had top neurosurgeons at Wake Forest and Duke look at Brent and say, "You have a tumor inside your spinal cord and it needs to come out sooner rather than later." They told us that the surgery is so risky that he would have to learn how to walk again afterward (with a walker for a while) and that he would have chronic pain and numbness for the rest of his life. We asked them both if they were sure this could not be MS or another neurological disease, and they both point-blank said "I am positive this is a tumor, there is no question." We had basically scheduled Brent's surgery for October. I had told work that I was going to have to take a week off (he would be in the hospital for 4 days) and that I would have to play my schedule by ear a little bit. But, before we let these Johns Hopkins trained surgeons cut into Brent, we were going to make pretty darn sure these guys were right and that this scary surgery was really the only option.
The feeling of amazement was only topped by the moment when I looked at the repeat MRI, 4 months after the first. The latest MRI (he had it on Thursday) showed that the lesion was in fact an extremely inflamed MS lesion. It is no longer inflamed and no longer shows up on a with-contrast MRI. Dr. Skeen, a neurologist at Duke (who we set up an appointment with on our own) explained to us that he, too, would have thought that the lesion was a tumor. HOW SCARY IS THAT. It has been hard to shake the feeling that Brent would have had an extremely risky and completely unnecessary surgery. If we had not insisted that we have a few more tests done, we would have taken the word of these talented surgeons and we would have put Brent's well being at risk for nothing.
Brent is obviously not in the clear, and he will now start a life-long process of figuring out how to deal with MS. The one thing that was a bit comforting about the surgery was that, when it was over, Brent was going to be how he was going to be. No wondering or waiting. MS will be a lot different. Hopefully he will be one of the lucky ones! We are so thankful that we pushed so hard, and we would appreciate continued prayers as Brent and I start to deal with a new reality.
Wow, Laura. What a story. We will continue to pray for Brent, of course. I'd love to know what MS means for him...if you know anything so far...I'm not sure I know what that does to a person.
ReplyDeleteHey Ari! Here is a lot more info on multiple sclerosis:
Deletehttp://www.nationalmssociety.org/index.aspx
it's a great website. thanks for asking :)
We are cheering for you both. I think Brent is very brave- and he is lucky to have you next to him!
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