The Ultimate Battle:Team Bryn vs. Chiari
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.
I will keep updating everyone on her journey.
Nicki & Family
We aren't on Facebook at the moment but I will try to update this page as much as I can when things go on with Brynley. I included a recent picture of Brynley to show how big she has gotten. So enjoy.. Feel free to email me anytime if you want to check on Brynley. I keep all her emails in a separate folder for her when she gets old enough to read.. This will be something she always remembers..
Thank you everyone. And I will update again soon ;)
Brynley was scheduled today to have her tonsils removed. The Dr cancelled last minute. There was an issue with the surgery because they would have had to stretch her neck out to get to the tonsils. This would cause compression on her spinal cord. Her spinal cord is already very very compressed as it is. It could paralyze her. We had to have the surgery cleared by her neurosurgeon in Michigan. After trying all day we finally got the approval. We arrived this morning and went through all of her check in and admittance and were told he cancelled the surgery due to being sick. I prayed and prayed for guidance for this surgery and I went in with a very uneasy feeling about it so I feel like God sure was watching over my baby today. I however felt the doctor was very unprofessional in how he handled the situation. We will see an ENT in Vanderbilt that way if something was to happen we would have a brain surgeon on site.
Update from Neurosurgeon. We saw Dr. Wellons in Vanderbilt on Monday for results to her MRI. And we have decided not to go forward with another brain surgery. We are going to monitor her compression and see the surgeon again in 3 months. We are also being referred to a neurologist for pain management for the headaches. I feel like waiting is the best option for her at this time unless something major happens and it warrants it.
The Opathmologist saw her Monday as well. Brynley's eyes have not improved with or without her glasses. She will be having an eye repositioning surgery not the original eye muscle surgery he had planned for her. This surgery consists of cutting through the muscle and stitching it further back to position the eyes where they should be. This has to be done precisely or it could damage her eyes even more. We don't have a date as of yet but I will post details as we get them. We do not know if this has ruined any of her vision at this time. She is not able to tell us yet so until then we pray her vision is not affected by this.
It has been a busy few days and we are exhausted. Continue to pray for my little girl as well as myself. This all as been really hard for myself and her dad to try to make the best decisions possible. The decisions become very hard at this point. I am on an emotional rollercoaster. So please pray for all of us.
Chiari has taken a toll on everything we do for Brynley and it sucks. But we definitely have a much larger power watching over her.. For that I am thankful.
Im so happy shes doing so amazing. Shes gotten sooooo big i love yu nicki ❤
I've miss y'all on FB! I am SO happy to see this update! I got teary eyed when I seen the updated picture! Look how big she's gotten! So awesome! I'll be thinking of you all! Xoxo have a Merry Christmas!
No one wants to have this happen. Hugs and Kisses
I know you said your a single mom and have other children but please snuggle her extra close and try to calm her when she has head aches. My mom says the head aches are so painful like getting your head ran over by a truck or someone slowly squeezing your head until it pops. The head aches are from her brain being squashed because of the small skull towards the back of the head. It could also be even worse head aches because her body is probably like most people with Chiari and her body makes extra brain fluid which also puts more pressure on her brain. Hope this helps
I'm sorry I can't donate at this time!! But I can offer advice. My mom has Chiari. She goes to the Chiari institute in ny state! They're the best!! If she's getting head aches she does need decompression surgery. She might also have elhers danlos syndrome. Lots lots of people with chairi need decompression surgery and have elhers danlos syndrome. I know your very far from ny but the Chiari institute had the best Chiari doctors in the USA. People come from all over the place to be treated at the Chiari institute.
Please please look into the elhers danlos most doctors miss this email with chiari patients
She may have elhers danlos syndrome the chiari is a symptom of this so of her other issues the pre syrinx and the gerd sound like this I have both of these and have been treated at Vanderbilt but my neurologist and neurosurgeon missed the elhers danlos
I am praying for your daughter and your family. I was diagnosed with chiara malformation in 2010. I am 55 yrs old and just now discovering that I had it. It was a scary thing to know. Mine is not severe as your daughter and I also was born with it. Not many people have heard of it or know what to do for it. Thank God my symptoms are just headaches and the pressure of my skull pushing my brain downward. I would love to help in your fight to make people aware of this condition. I pray that your daughter will be healed. My email address firstname.lastname@example.org
Please email me your address. I'd like to help but not through this site as they take a portion for their services and I'd like your daughter to receive ALL of it. MelissaRaymond@mail.com
If I can help at a later date I will. I have been on a long road myself and money is tuff. I understand how hard it is being a single mom. I was up to about a yr and a half ago. I have Chiari and 3 boys w it. I pray for your daughter and you and your other kids. It will be hard but u will get through it.♡♡♡♡♡