We got the CT scan results yesterday! The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)….basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O No wonder I am dealing with pain and spasms! So my GI surgeon’s office got me in that afternoon. I’ve been having appointments every day….I’m tired to say the least. My surgeon pulled the tube out and replaced it with a temporary balloon-less tube to let the area heal. And she’ll later switch it to a different size in 3 weeks. We’re still not sure if this will resolve all issues as my GI specialist said there may be more than one thing going on, including the motility issue. But at least we can take care of this specific problem now.
Because I’m losing weight again, my GI dr. is going ahead and starting me on an elemental tube feeds formula which is more broken down and usually easier for patients with dysmotility to tolerate. I see him again in 12 days!
Today I had urodynamic testing (super thankful that’s out of the way!), and the results aren’t good.. My nervous system is not working well at all, and she thinks this is from a cerebellum issue and/or a spinal cord problem (which my mitochondrial specialist suspects as well when I saw him back in June). My specific bladder issue is hard to treat, but she is starting me on a medication….sometimes it works and sometimes it doesn’t. If it doesn’t help, she’ll re-evaluate and go up the ladder from least invasive to invasive.
Now for some good news—more of my muscle was found which means the mitochondrial DNA testing can be started as soon as my insurance approves it! 🙂 If all that goes well, I have a tentative appointment with my mito specialist in San Diego on January 20th!
The first week of December, I have GI, an appt. with my pain dr.’s colleague, and physical therapy. So I will be enjoying next week off! 🙂
Have a blessed Thanksgiving next week!