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Hi, many of you know that mom has been dealing with memory and cognition issues for at least the last 10 years. We had found seizures back in 2012, but did not continue with medicine after 2014 when the EEG did not show seizure activity. We had seen a neurologist about the memory in early 2018, and still we had no answers.
Starting 2022, we started to search for a vascular doctor, because DJ (daughter) had been reading about Dementia and found that Vascular Dementia made the most sense. The vascular specialist found blood flow issues in the legs (Peripheral Artery Disease). They did not find any restricted blood flow in her Carotid, so again no answers. If you know Betsy, you know she doesn't give up easy. As the dementia symptoms continued to wax and wane in difficulty we were still concerned about how to help. After a few balance issues that seemed to be getting worse over the summer, this began a long road with many doctor visits and many test to find answers.
August 2022 Doctor appointments:
ENT- No signs of balance being caused by ear issues. However, mom was finally willing to do a sleep study as she was showing signs (for many years) of sleep apnea.
Vascular- Again we wanted to make sure she wasn't having a blood flow issue in the carotid. This scan was the same as the one in the Spring, and he suggested a neurosurgeon as it could be a neurology issue for the balance.
Neurology- We met with a new neurologist about the balance, we also mentioned moms worsening neuropathy in the feet and hands. The doctor did a nerve check on moms arms and suggested braces to be worn at night. He also said the balance issues are going to probably be a seizure thing, as that makes the most sense.
September we did the sleep study and a 3-day EEG. Mom is on a waiting list for an APAP for her sleep apnea. We also just started seizure medicines for the seizures. The one issue is that these seizures are both frontal and temporal lobe.
Fast forward to October 30th. 1:15 am mom had a quick onset headache that she barely made it to her bed from. She said she felt off, but still wanted to go to church. She had another worse headache at church around 11:15 am. I got her Tylenol and it took another 25 minutes for her to feel normal again. But she said her right eye had severe light sensitivity (even without the eye ball her socket still has severe pain), neck pain on the right side, and that side of her face was a bit droopy. My first thought was possible stroke. But she seemed better. We decided to wait for another severe headache.
October 31st: Mom still didn't feel right in the morning. So I told her we would check about a neurology appointment, but felt like an ER visit was needed. The only appointments available were during my personal doctor check-up time. I took her with me to my appointment and let her stay in the car. Once I came back out (15 mins), I could tell she still was not well. We drove across the street to Piedmont Rockdale hospital. They took us back rather quickly. The nurse suggested a possible stroke due to the sinking of her right eye, and one-sided pain. The ER doctor ordered a CT scan and they gave mom a giant amount of meds for the headache. She came back and then was told they were looking at blood flow and needed to do a CTA (CT scan with contrast).
Later, Dr. Graves (Most amazing ER Doc) came in and did his best to explain moms disease. She has MOYAMOYA disease. It means her brain is not getting enough blood flow. Based on the scan she was at around 50%. We were referred on to a Vascular Neurosurgeon in Atlanta. His office was closed by the time we were discharged, and his soonest appointment was November 8th.
You can read more about Moyamoya at this link:
https://www.ninds.nih.gov/health-information/disorders/moyamoya-disease#:~:text=Publications-,Definition,to%20compensate%20for%20the%20blockage.This explains her dementia, seizures, and so many things. More details to follow.
Moms wrist and hand without the cast/brace. You can tell ...
