Posted by Stephanie:

Mike was having more issues with swallowing this morning as well as more trouble walking. He’s now experiencing loss of coordination and balance on his left side as well as his right side. And things just seem to be slowly but progressively getting worse. I called the neurologist and he suggested to bring Mike back in. So we are back at South Health waiting for him to be admitted again. The neurologist-on-call called over to the neurosurgeon-on-call at Foothills to see if he could expedite the biopsy but was told that the three surgeons who looked at his scans don’t think they can get a good sample to be biopsied so unless something changes on his next MRI it looks like the biopsy might not happen after all. So we are not sure where to go from here. They want to do another full round of re-testing and then ?? We are feeling pretty discouraged right now as there are no answers and there doesn’t seem to be a plan either. Probably won’t see a doctor until tomorrow so will update when there’s something new to say.

Monday, June 10, 2024

So I figured we should update but there’s really not much new to say. They are at a bit of a loss with what to do going forward. They’ve tested for everything they think it could be so now they’re going to do more testing for things that don’t necessarily check all the boxes but maybe might shed some light on what’s going on. The MRI from last night showed no change from the previous one so still no good option for biopsy. Basically there are lesions (scar-like marks that show up on the MRI) on his brain but they can’t figure out what exactly they are, what caused them or if they can be treated. She showed us the scans and pointed out how deep the lesions were and explained that the surgeons thought it would be way too risky to try to get samples from those areas. She also said that aside from the lesions his brain looked healthy. They are and have been consulting other specialists and samples have been sent to the Mayo Clinic but nothing helpful has come back so far. We asked about getting a second opinion and she said ‘honestly, people come here when they are looking for a second opinion, this is one of the best neurology clinics’. She said she understood and support any decision we made but they see people go to the states and spend a lot of money just to start from scratch, redo the same tests, wait the same amount of time and don’t come back with any different results. We do have his records and scans that we are looking into sending to any neurologist who will look at them to see if maybe someone somewhere has seen something like this before and can shed a bit of light on what to do to move forward.

Thursday, June 13, 2024

Over the course of this week Mike had a couple specialists come in to see him and a bunch of more testing done. After his last test later this afternoon he was discharged so we are home again now. They said it’ll probably be a couple of weeks until all the results come back and in the meantime we have a few appointments with other specialists. Since they still don’t know what is causing the brain lesions they also don’t know when or if he will regain these functions so we need to adjust to living with his conditions as they are now and hope things don’t get worse again. He will be working with physio and a speech pathologist again with the hope that with some work he can function a little better. We have also been in touch with a couple neurologists from different areas and I will be pursuing more as well as implementing some dietary changes and natural options, not sure if they will help but they surely can’t hurt. So unless something significant comes up I might not post for a little while until we know more.

As always, thank you for your continued care and concern, it is much appreciated!