May 16, 2017 Latest post:
Oct 15, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Chris' story starts June 2016 at the end of our Las Vegas vacation. It was a great trip but the last couple of days Chris started feeling like he was a little dizzy and felt like he was coming down with a cold. By the time we returned to Wichita he really felt as though he had a sinus infection and possibly an ear infection with pretty bad dizziness. Went to see PCP, diagnosed with some fluid in his ears and a sinus infection. Started on steroids and Levaquin. Sinus infection cleared but dizziness just continued to get worse. 6 days later he was so dizzy that he was falling down a lot, ended up in the ER due to a fall and hitting his head. CT scan of head was negative, ER doctor diagnosed him with Benign Positional Vertigo and sent us home. He was set up to see ENT. He also had eye movements by this point that looked like Nystagmus which can go along with the vertigo. After seeing the ENT she tried a maneuver to move the crystals in his ears to help with the vertigo. It was unsuccessful. He had an MRI of the brain, hearing tests and another visit with the ENT. They gave him some meds to try and help and he continued to have severe dizziness, difficulty walking and the eye movements. This went on for a few more weeks. He got slightly better for a few days. Then he got worse again. By July 22 he went in for another outpatient test sceduled by the ENT which was a VNG, this test was to record the eye movements with position changes to help diagnose the vertigo. Well within just a couple of minutes of starting the test the tech left the room and brought 2 more people in. They were all just in awe of what they were seeing. And they were all in agreement this was not Vertigo and this was not coming from his ears. At this point he was sent to the hospital for admission for a Neuro consult. He spent 5 days in the hospital undergoing tests, CT scans, MRI's, Lumbar puncture, lab work, EEG, cardiac montioring. The neurologist kept saying he didn't know what was causing it and he didn't know why he was consulted. At this point we were very frusturated. On the 4th day they consulted a Neuro opthomalogist to come see him. This Doctor walking in the room and looked at Chris for 30 seconds and said I know what's wrong with you, those aren't Nystagamus that's Opsoclonus. This is not all in your head! Finally we found someone that knew what was going on. More lab work that was sent out to Mayo and would take about a week for results so he was sent home the next day while we waiting on confirmation of the diagnosis by the lab. After the lab confirmed there was presence of a paraneoplastic Antibody in his blood he was readmitted to the hospital on August 3rd. This hospitalization he spent 14 days in the hospital receiving treatment for the paraneoplastic opsoclonus. And undergoing CT scans looking for sources of tumor that could be causing his body to produce the paraneoplastic antibody. The only abnormal findings were a 3 mm nodule in his left lower lung which is typically a non significant finding and stable hemangioma's on his liver which we have known that he has had since he had his gallbladder out many years ago. He was given high dose steroids IV for 5 days to help with the symptoms which didn't help much at all, then they placed a dialysis catheter in his neck for plasmapheresis to filter the antibodies out of his blood. The plasmapheresis was successful at resolving his symptoms, the dizziness and opsoclonus resolved. After 14 days in the hospital he was sent home and set up for an outpatient PET scan to see if any cancer would show up. The theory with paraneoplastic antibodies is that the body produces these antibodies to fight a tumor. These tumors are typically small and difficult to find. The paraneoplastic antibodies do a good job of preventing the tumor from growing much or from spreading which is why they are difficult to find. But as long as the tumor is present the body will continue to produce antibodies. The PET scan was negative and we just waited to see if symptoms would return. Every day and week and then month that passed we started to think that maybe it was just a fluke and that all was well. That was until April 2017. Chris started noticing that he was tired more than usual. He also started noticing what he called "brain fog" he was working night shift at the time so these symptoms were pretty easy to dismiss for awhile. The problem was the symptoms kept getting worse. The "brain fog" progressed to short term memory loss. He was making lots of mistakes at work which was very unusual for him. Then I started to notice changes at home in his memory, he was displaying symptoms of "mild dementia" I had been trying to get him to go to the Dr for a week before this just due to his c/o of "brain fog" but he refused. But once the "dementia" symptoms appeared like forgetting that we had eaten dinner 2 hours before I insisted that he go to the Dr. We had assumed that when the paraneoplastic antibody syndrome acted up again it would be with the same symptoms as before but these symptoms were completely different. Saw the Neuro doc the next day and he confirmed his suspicion that it was the paraneoplastic syndrome again. Lab work was drawn at the PCP and it was decided to wait until Monday to admit him to the hospital for Paraneoplastic Limbic Encephalitis. The lab work once again did confirm that the antibody was present in his blood. he had a repeat Ct scans that were unchanged. MRI of brain, EEG, lumbar puncture. 6 more treatments of plasmapheresis. The symptoms mostly resolved by dismissal 9 days later. But once again no diagnosis as to the cause for the paraneoplastic antibodies. So at this point we decided it was time to consult Mayo to see if they can give us any better insight as to the cause, long term prognosis and treatment. So that brings us to current situation. Scheduled to see Neurologist at Mayo on May 23rd. will post updates as we get them. If you have questions please ask, I start typing and sometimes forget to stop and explain in non medical lingo.