Chiari Online Support Group

It's been a long year

2017 has been a crazy ride so far, and it just seems to be the beginning. Back in january, I was hospitalized for 3 days for dizzy spells. That’s when I was diagnosed with Postural Orthostatic Tachycardia Syndrome( POTS). After that hospitalooks visit, I was referred to a specialist to confirm my diagnosis. She confirmed it but she was also pretty sure that I have a connective tissue disorder known as Ehlers Danlos. I am now referred to a geneticist to confirm this. After a while, It seemed like I was starting to do better. I was having better days, passing out less, feeling better all around. But one day, I got started to get a horrible headache radiating from the back of my head down my spine. Ever since I was a little kid, I have gotten sharp pains in my head. I always just figured that everyone else got them too and that they were normal. One day, the pain just got to be too much. So I went to the ER, and they gave me migraine medicine aND a liter of fluids and sent me home because I felt better. The next day, the pains returned. I made yet another trip to the ER and just had a liter of fluids. I was getting tired of not having answers! Then, on the third visit to the ER that week, I got an answer. The doctor decided to run an MRI of my head and neck and there it was. Chiari Malformation 1. I had no idea what this meant at the time. They referred me to a neurologist, who then referred me to a neurosurgeon. After meeting with the neurosurgeon, I was told that I not only have a chiari malformation, it’s a complex chiari malformation, and that I also have craniocervical instability. This was about a month ago, and Im now 8 days out from surgery on June 15. I’m scared to say the least. I never would have thought I would be having brain surgery at the age of 17. I know that I have highly skilled surgeons and that this is necessary in order for me to get better, but it’s just so overwhelming.

Hi Katie. Sorry you are having so many health problems. Did you have your surgery? How did it go, if so?

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I had my surgery on June 15, and it went incredibly well. I’m healing
fantastically and I have had 0 problems since surgery. Thank you for
asking!!:heart:

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What fantastic news, Katie! So you’ll be feeling well and be ready to go back to school when the year starts!

Excellent work. And it IS work: preparing for, and recovering from surgery takes determination and effort. Well done.

Please don’t forget about Ben’s Friends: there are many people here who could use a “cheerleader” who’s got the t-shirt! We’re all about supporting each other, and hearing your good news will give others hope.

Thanks for the reply!

Seenie

Hi Katie, So wonderful that you are doing so well, and I was wondering if you POTS symptoms improved as well? And were you ever diagnosed with EDS? I am curious because I have a type of POTS and on our site there has been discussions on the frequency of POTS patients who also have Chiari. So just curious
Debbie

My POTS symptoms have improved tremendously. I haven’t fainted at all and
my tachycardia has even improved. I have been diagnosed with EDS, but I
don’t see a geneticist to get typed until August 31.

So great to hear!!! It is a hopeful thing to know you have had the great benefits of your surgery.
Debbie