Purple for Tiffany - A Chiari Journey

My name is Tiffany Kuchar. I am 41 years old and a wife and a mom to 3 kids, two here with us and one with our family in Heaven!

I have struggled with health ever since I was young. Various “medical mysteries” and I am happy to say after many years of fighting I have some answers to my bigger problems.

During an “episode” my sister-in-law Jennifer brought me to the ER like she has had to many times before. It was in an MRI they almost didn’t do that they discovered I had a Chiari 1 Malformation. They informed me it was minor and couldn’t be causing my issues and sent me on my way, like many times before. My episodes feel similar to a stroke. It will come on quickly, my head feels tingly, vision gets weird, I lose mobility of my arms, slurred speech, difficulty swallowing, the right side of my face droops, and my cognitive abilities are significantly impaired. I have been dealing with these episodes for over 10 years. I’ve had my throat stretched, PT, allergy testing, and many other tests just for my choking. They are scary. Even worse, I can't protect my children from them. I’ve had to teach Tempe how to call 911 and Ryan if mommy doesn’t wake up. She has had to care for her sister by feeding her, changing her, and entertaining her during my episodes when I’m near unconscious on the couch. This is NOT ok. She is strong and has taken on a burden that she is far too young to bear.

This is what led me to advocate for myself. I researched the new diagnosis and discovered my story is very common in the Chiari community! I joined a Facebook group that helped me understand comorbidities and the connection with other diagnoses I have including hypermobile Ehlers Danlos Syndrome, Superior Canal Dehiscence Syndrome, and I’m currently undergoing testing for Postural Orthostatic Tachycardia Syndrome. It’s a lot!

I learned hypermobility would play a significant role in my Chiari journey. See, the only fix for Chiari is surgery. A big scary surgery that will remove part of my skull and potentially the c1 and c2 vertebrae and maybe even as far as removing my cerebral tonsils. I cried as I learned what could be my future and is now my present.

On April 17th I went to Brown University in Rhode Island to meet with one of the top specialists in the country for Chiari. She also happens to be an advocate for EDS! I learned in my group that if you start with the best neurosurgeon your likelihood of success goes up drastically. I was informed I have a significant herniation of 8mm and my cerebral tonsils, which are supposed to be in the back of my head, are currently being pushed to the front. The herniation causes very minimal flow of my cerebral spinal fluid. This causes more pressure in my head which adds to my never-ending headaches as well as tension all the way down to my feet which aren’t responding properly.

I am never not in pain. My head always has pressure and pain. It is always an effort to think, even for the simple things. I have been pushing myself for literal years. I now have hope. I broke down in tears and all my walls came crumbling down when she said, “you have an obvious and significant Chiari.” We discussed the option and it’s the only one. A surgery that will take a year to fully recover from. On July 7th I will have surgery. I will know more about what exactly will be done after I have additional head, neck, and full spine MRIs. This will show if there might be any reason for the Chiari, like tethered cord. The basic recovery is 1-2 days in ICU, 3-5 in general observation, then discharged but must stay near hospital as there is a high risk of Cerebral Spinal Fluid (CSF) leak or infection. I will have my post op on July 18th and will be able to fly home on July 21st provided there are no complications.

Once I get home, I will be very restricted. Even to the extent I will have to be supervised with Cadence for 3-6 months because she is too young to understand she can’t hug mommy. This breaks my heart. I won’t be able to work until at least 6 months but likely not my accounting job as it requires much more thought. I’ve been told by others in my group they could manage basic daily tasks around month 9. I have no clue what MY recovery will look like. I am a fighter, just like my strong and stubborn Czeczok family, and I will continue to fight!

The good news is everyone says they do not regret the surgery, and they would do it all again if needed. I know someone locally that shared her story, and it gives me hope to finally be able to be the mom I want to be! To play with my girls, go for a walk without it making my head so much worse, even just bend down to help Caddy go to the bathroom without feeling like I could black out. It has affected more than just the girls. Ryan has had to step in more and more to help me with the house, the girls, and even caring for me. He does this without complaint. A lesser man could not endure the life trials he has faced with me. He stands by me and gives me strength and encourages me to keep my eyes vertical when it feels overwhelming. He bears the burden of being the main financial provider and with what we are facing that is significant and he never adds that to my worries. He puts his family first always and I can’t thank him enough for his patience!

I know the Lord is with me, His plan is perfect! I have trusted Him through years of infertility, losing my dad 2 days before Temperance was born, the loss of our second child, the miracle of Cadence after giving up on more children, and all the trials in between. Whatever happens, with this surgery, recovery, and life after all of it, He will still be with me.

My go to verse is Hebrews 13:5-6:

Let your conduct be without covetousness; be content with such things as you have. For He has said, “I will never leave you nor forsake you.” So we may boldly say: “The Lord is my helper; I will not fear. What can man do to me?”

I am bold. He is my helper, and I will have no fear as He WILL be by my side!

I’m incredibly thankful to everyone helping me and my family. I’m not one to accept help as I much prefer to help others, but I am seeing how those around me truly care for me and it’s a beautiful and humbling feeling! Thank you all from the bottom of my heart!