Thank you all for your continued prayers for me!
After months of waiting and not knowing anything new, there is positive progress! My mom and I are flying to a specialty Chiari clinic in Colorado (2/15-19). They will do a 3 day evaluation to determine if they think I would benefit from brain surgery. If there is a surgery, it will be about a month later, after the insurance pre-approval is processed.
It has all come together in the last two weeks and God’s hand has clearly been on all of it!
The neurosurgeon I saw in Seattle, in October, was concerned that on top of Chiari Malformation, I also have MS. I was referred to the MS clinic at OHSU, in November, and I’m still waiting to schedule with them. I don’t think that I have MS. I have no brain lesions and different symptoms. Chiari is still being researched and there are still many unanswered questions about it. Among doctors, there is not consensus about the cause, the symptoms, or the treatment. Traditionally (Seattle doc) it was believed to only affect motor skills and all other symptoms were attributed to MS or something else. The newer school of thought is that the pressure on the cerebellum (squished brain!) and the blocked CSF flow (crowding of the brain tissue blocking cerebral spinal fluid flow) can be the source of ALL of the symptoms.
I waited months to see the neurosurgeon at UW. I was so disappointed that during my appointment he spent less than 5 minutes talking to me about my symptoms and didn’t spend much time at all reviewing my medical history. He seemed to be relying on notes from people who hadn’t thoroughly examined me. He seemed to have made all of his decisions before he even evaluated me. At the end of the appointment, he remarked that he was the second neurosurgeon I was consulting with about surgery. I now think that was a big part of the issue with him. The other neurosurgeon never looked at any scans and told me that he couldn’t speak to the Chiari because he didn’t have any information. He wasn’t very familiar with Chiari, that’s why we went to the specialist in Seattle, but he seemed unwilling to contradict the other neurosurgeon. I don’t understand how he could have thought that first doctor had really examined me because there would not have been any notes about that since it didn’t happen. This seems to be a common thread that is woven into many people’s Chiari experience.
I am so excited that the clinic in Colorado will do a thorough analysis of my medical history and all of my symptoms! Over the last few months I have felt increasingly weary and my symptoms have progressed. Lately, my hearing has been going in and out in both ears and my head and neck pain is worse. Last week my hearing loss lasted five days in one ear, it felt like I was underwater and sound was muffled by 90%.
I am hoping that in CO they will not find anything that will prevent the surgery and that I will be able to have it.
Please pray with my family and I that God will use this neurosurgeon and his team to heal me and if not that he will guide them to the right answers.