I'm Nicki... I am a single mother of 4. Alexia,9, Corbin,7, Mady,6, and Brynley is now 2 years old. On June 18, 2014 we found out my 14 month old daughter has been diagnosed with Chiari Malformation. What is Chiari Malformation? Chiari Malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. It is a complex and complicated disorder and requires a lot of attention & most require brain surgery at some point in life. It is called Decompression. However, decompression does not fix the additional problems that come along with it, it just alleviates them. Chiari is not heard of much and a lot of doctors who do not understand this disorder brush it under the rug. It can be fatal if left unattended to but some people go throughout their lives without any symptoms whatsoever.
The first sign that something was wrong with her was her eyes began to cross. We took her to her peditrician where he then sent her for an MRI to make sure that there was nothing in her brain causing her eyes to cross. He did this as a precaution in hopes that it could be just her eyes.
Brynley had her first MRI on June 16, 2014 which confirmed that she indeed does have Chiari Malformation 1 meaning she was born with it. She was put completely under for this as it was very scary for us. After coming to terms with what the doctor had told us she had, I instantly began researching this thing called "Chiari." I wanted to know what it was, what it did, where it came from and how we could fix it. I did not expect to find out the true meaning of Chiari and how unpredictable and angry this thing could be.
Brynley underwent another MRI on July 5th, 2014. This time is was on her spine in which she had to be put under yet again.. On July 7th, 2014 we sat down with the eye doctor and we were told she had Accommodative Estropia.. What is that, you ask?
Accommodative esotropia refers to eye crossing that is caused by the focusing efforts of the eyes as they try to see clearly. Patients with refractive esotropia are typically farsighted (hyperopic). This means that the eyes must work harder to see clearly, particularly when the object of regard is up close. This focusing effort is called accommodation. The closer an object is to the eye, the greater the amount of accommodation that is required. A side effect of the accommodative effort can be excess convergence or crossing of the eyes. She was prescribed glasses. However, the glasses may not work. They can not tell if this is associated with the Chiari or not. So she will wear glasses in attempts and hopes of fixing the problem. Surgery on the muscles of her eyes is possible but a last resort...
Directly after the Visit with her pediatric Opthamologist, we were able to sit down with the a pediatric nuerosurgoen in Vanderbilt. We were told her chiari is 16 mm and it is between her 2-3 vertebrae. The doctor has labelled it as a "large" chiari. He also stated that she had a pre-syrinx..saying that there is "flashes" of fluid in her spine.. A pre-syrinx is a fluid accumulation within the spinal cord tissue preluding to the formation of a clear cut syrinx. If a syrinx of any kind is present it means that there is a blockage somewhere within her spine. Blockage require surgery as soon as possible.. HOWEVER, The Pediatric NS in Vanderbilt did not believe she needed even to be seen for a year, but with the pre-syrinx he wanted to see her back in 3 months.
I did not feel comfortable with this after reading articles, watching documentaries and through extensive research on Chiari. I instantly started emailing her MRI to Chiari Specialists and started getting other opinions. After sometime of researching doctors in the US who study and know Chiari since it is so unpredictable and complex an emailing her MRI to about 10-15 doctors within the Chiari Insitute and other pediatric NS who knew Chiari, I found that there was alot that disagreed with the MRI and found other problems with it that were never brought to our attention. Being a mother of 4, I went with my gut instinct and requested a second opinion. BUT we would have to travel outside of Tennessee, our home.
Looking at her MRI, you can see that there is several other issues in her scan that need to have immediate attention. That is why she is seeing a Chiari Guru. She will see Dr. Gilmer in Michigan, September 9. She went ahead and scheduled surgery September 10th, if we like the doctor and if she decides that Brynley does indeed need surgery, we will already be in Michigan at that time.
I have not been back to work due to doctor's appointments after doctor appointments. Taking her out of state to been seen will be costly. That is where you come in.. We need help geting her there. All proceeds will be donated towards travelling and medical expenses as her insurance will only cover 80% of her medical expenses. If you are not comfortable with donating money, we are asking for gas cards and gift cards as well, as we will be driving there instead of flying.
Brynley also suffers from Silent Gerd, Nystagmus/Accommodative Estropia, a fuctional heart murmur. Associated with Chiari, she has retroflexed odontioid, hydrocephalus and basilar invagination.. she gets headaches and smacks herself and bangs her head against walls.
To track her journey find me on facebook. "Nicki Rhodes"
Brynley requires total and complete attention right now, attention that only a parent can give. She is a bright young girl and deserves the best. She is strong and she is amazing... Brynley has a long road ahead of her and she, myself and my children need all the help and support we can get. As well as the rest of Brynleys family. Nothing is to small. We greatly appreciate everything you are doing to help us.