Chiari Online Support Group

My Story, My Beginning

My journey started December 2011 as a little tingle in my bottom lip left-hand side. I knew I hadn't been feeling well so I figured "great cold sore/ fever blister coming on" and off I went looking for my medicine. It was a Thursday evening normal stress of the holidays coming no big deal. Two days later the whole left hand inside of my mouth was numb and by Monday the left cheek up to my eye and down to my jaw were numb/tingly. I can only describe it a having a sunburn with salt water dried on your face and sand being pelted at it at a high rate of speed. It was not pleasant. By the time I could get into the doctor I had lost 15 pounds because eating was painful. Eating things like instant potatoes was excruciating.

My doctor felt it was stress and anxiety induced trigeminal neuralgia. So he started me on anti-depressants. After a month of that we went to anti-seizure medication, a low dose for a month then jumped to a higher dose a month later and then stayed at that dose until March 12th, 2015

Mother's Day 2014 while driving back from my mother-in-law's the lower part of my left leg started to tingle and burn almost like it was asleep but it shouldn't have been asleep because I was sitting upright in the car driving. I wrote it off.

As the summer progressed the tingling in my face got worse, the tingling in my leg came and went more frequently, and it also started in my arm. All on the left side.

In October 2014 I quit smoking after 20 years. Symptoms still progressed. I told my doctor around Thanksgiving about the progression and the quitting smoking. He wrote the progression of symptoms off to detoxing. I thought ok it seemed reasonable. He said give it another month and we'd go from there. Well another month went by and my birthday rolled around which was also my next appointment with him oh When I told him the symptoms hadn't changed he ordered an MRI. That is when they found the 6mm herniation.

My doctor still felt the chiari had nothing to do with any of my symptoms and they were still stress and anxiety induced. I asked for a referral to a neurologist anyways. That was a useless trip because I saw the PA for 45 minutes and the neurologist for 2 minutes to come out of there with a prescription for Topamax and Gabapentin for headache prevention because they didn't even acknowledge the chiari at that visit or the follow up visit.

I then took it upon myself and saw a neurosurgeon, by accident, I thought it was another neurologist( I was a little flustered at this point). It so happened I lucked out because he specializes in Trigeminal Neuralgia and Chiari Malformation.

When I saw him he told me I did not and never had trigeminal neuralgia and that all my problems stemmed from the Chiari Malformation and wants to do surgery. I saw my PCP later that day who wanted a second opinion so at this point I am waiting on another appointment in May at another hospital with another neurologist and also a neurosurgeon.

If the second neurosurgeon says surgery would be beneficial then I plan on going through with the surgery. Just in the past month symptoms have gotten worse and moved to the right hand and the memory and completing sentences and conversations is becoming very, very difficult.

As it is it has taken me three days to put this together.

I am hoping on some insight into the surgery-the good, the bad, and the ugly

Thank you so very much for sharing your story here. I am very grateful to know that I am not alone on this confusing journey. Your story is different from my story but your frustrations are so similar that I had to reach out and say thank you.

Hello. I am new here. I feel for you and hope you find some answers soon. I am curious to find out since you mentioned cold sores if you have ever been tested for HSV or had it typed and have you ever been tested for disseminated HSV? I’ve been curious how much HSV is playing into the chairi? HSV can cross the blood brain barrier and create syrinx that come and go away. Leaving you with random variable symptoms depending upon where the syrinx happens to show up. I’m wondering if some chairi sufferers have a viral aspect to thier chairi since they can both cause hydrocephalus and how many might have decreased symptoms or benefit from antiviral therapy. Please research and consider adding it to your inquiry if HSV could have become systemic and is now contributing to the symptoms. Many people are unaware that HSV can on occasions cross over to effect the entire body internally as well as externally. Thank you for your consideration. Kris

Kris I'm not sure where you got the cold sore theory from because I never said anything about cold sores. It was difficult to eat because my mouth was numb and had no feeling so I was always biting my cheek and causing large bloody wounds in my mouth.

My story My beginning post on April 7 2015 @750 Plwise writes: " My journey started December 2011 as a little tingle in my bottom lip left-hand side. I knew I hadn’t been feeling well so I figured “great cold sore/fever blister coming on” and I went looking for my medicine"

My apology to you if I misinterpreted anything. Sometimes I do have some confusion. But as to where I got the idea from, You used the words “cold sore” yourself in the above referenced post on your blog; you may not remember it but you did indeed say something about it. I meant absolutely no offense by bringing it up and if on the other hand you are having second thoughts about disclosure, perhaps editing out that part of the sentence would be beneficial to avert any further misunderstandings in the future. Thank you for the clarification. I can see now thier clearly is no correlation in your case. Hugs! Kris