Giggle Time: Chiari 1 Malformation or CEBV or Something Else?

When odd things happen to me I just laugh them off and so does my family. Laughter is the best medicine when dealing with chronic illnesses. I am going to share something which is short and sweet but really funny. I, however, am not sure what condition this is related too. I do believe EBV can cause more severe symptoms than reported. At this point in my life I have had CEBV (chronic ebstein barr virus) for over 20 years.

Well let’s get to my funny. One night I was preparing everything for bed which I have a certain routine. After I got my youngest son to bed, I proceeded to turn the lights off which due to a positive romberg sign I need light so I work from the front to the back of the house towards my bedroom. But one special night my son turned off the hallway light and I thought I was good because my oldest son’s light was on … I could see fine then all of a sudden he hit the light switch to his bedroom off. Suddenly I bounced off the hallway wall and quickly returned to my normal standing position. I was like “what the hell just happened?” LOL. My son quickly turned back on his bedroom light and said “are you okay?” He asked what happened? All he heard was a loud thud. LOL.

The take away lesson is never trust others to leave their lights on for you … LOL. Just teasing. Needless to say my son now always leaves the lights on and always allows me to turn every light off for my stability. This happened several years ago and since then my balance and the dark has worsened so due to this I have night lights in the bathrooms, I keep my bedroom tv on all night to light the room in case I need to get up and I have special lights throughout the house to light my way through the night. They are motion activated lights and they are a life savor.

Good luck and Stay Strong!

 

Down and Out … but I’m Back!

Sorry for all those following me for me not posting it has been a rough couple of years. What started all this off was a few years ago I threw a stick for a dog and well my knee went 3 different directions and I fell to the ground which tore my acl (and other ligaments) which they say now is incompetent. This lead to a blood clot in my leg, hospital stays, injections, and after 8 months was allowed to finally have surgery on my knee.

Shortly after that I was experiencing many more symptoms including balance issues (falling into walls) w/ a positive romberg’s sign, stuttering and slurring words, forgetting to breath, numbness and twitching of face, difficulty walking (feeling as though my leg is stuck to the ground or as if it didn’t get the signal to walk), more fatigue (which I didn’t think was possible), absent seizures and drop seizures and a bunch more. So my neurologist started testing for multiple sclerosis, lupus and all related conditions. When some blood tests came back it said I was negative for lyme’s disease but then the neuro said I should see a lyme literate doctor (LLMD) due to some of the bands that were high and showed it was chronic. He stated they were highly related to lyme’s disease. Due to all the debate over these bands in the medical community and the large out of pocket cost because most of these docs do not take insurance so it can get expensive I opted not to see the LLMD.

A month later my brain mri came back and showed I had chiari 1 malformation which could cause all my symptoms. Chiari can cause over 80 different symptoms to be exact and is considered one of the conditions that can mimic multiple sclerosis. Upon going to a chiari specialist neurosurgeon, he stated not only do I have chiari but a syrinx in my thoracic spine which is caused by the chiari blocking the flow of cerebral spinal fluid (csf) which allows the csf to seep into the spinal cord which causes various nerve problems and interrupting the signal to various body parts to move, etc.

So the neurosurgeon (NS) scheduled me to go into surgery 5 months later for chiari decompression. Normally when the chiari is addressed with decompression surgery the syrinx will shrink thereafter but it can take up to 1-2 years however the damage it has done may remain. With me the pain and symptoms have remained. I am looking to get another mri of my thoracic area after my appointment in July with my NS along with one of my skull/brain to ensure no fluid has collected.

I will be writing another blog post on my experience with the chiari surgery and all the various complications I had. Do to the many complications I have had routine csf spinal taps during the hospital stay and towards the end my csf spinal fluid still showed inflammation which I am somewhat attributing to the EBV but to be sure I will be seeing a neurologist and have them test my csf via spinal tap for MS and any other related conditions that could be causing the inflammation. Once this is done I will post the results.

I have heard through various online sources that EBV can effect the csf in the spine and cross the blood brain barrier which I would think can also mimic MS if it does this. Also, a year ago after a brain mri it was noted on the report that I had a lesion but they were not sure what caused it. All they knew is that it was not a stroke or TIA (mini-stroke). So I will be interested to see over the past year if anything has developed.

Stay tuned for my journey with chiari and syringomyelia (spinal syrinx). This is where it gets crazy w/ a 3 month stay and massive complications but through it all I stayed strong and even helped other patients in need. Pay It Forward! Big hugs to all.

PS Also if you research chiari 1 malformation do not exclude it from the possibilities of conditions based on the images you see on google, etc many are very dramatized. When I first saw it on a ms group as a possibility and saw the pictures showing it … I thought no way can a radiologist and a neurologist miss that … I was wrong. 1 in 1000 is believed to have it and it is missed a lot more than you think and it is critical to see a chiari specialist or you will just be wasting your time with all the neuros who know very little to nothing about it.

Here’s a YouTube Channel with tons of info on Chiari 1 Malformation and related conditions: https://www.youtube.com/channel/UCv2ze79ULx2m772UDUVTSww

Good luck and big hugs!