Rachael’s Story

Site created on August 12, 2007

Welcome to our family's CaringBridge page. Rachael is now seventeen, and has been diagnosed with Chiari Malformation, Syringomyelia, Tethered Cord, Ehlers Danlos (a connective tissue disorder), and a Mild Scoliosis. She has four sisters, Hannah, Abby, Lily, and Callie; and one brother, Luke. We're very glad you stopped by, and appreciate your prayers for Rachael and all of our family.



In January of 2007, Rachael began having headaches. First, it was assumed that they were hormonally related, so we visited our family doctor whom prescribed some headache medication.

When that did nothing for her, we decided to check with her ENT since Rachael had a long history of ear, nose, and throat issues. When he could not find a cause for her headaches, he ordered an MRI. We went to have it done that very same day in March! And then waited.....an entire week passed, and nothing!!!

Finally, the day of our appointment came, and we learned good news, and we learned puzzling news. There was not a brain tumor, but they did note that her pituitary gland was slightly enlarged. This caused her ENT to recommend that we see a neurosurgeon for an opinion.

So, in April we saw the first, then the next one, and then many more after that. None of them could explain to us why Rachael was having daily, debilitating headaches. It was now May, and we still had no answers.

One of the many doctors that we saw was a pseudo tumor cerebri expert. I had suspected that this may be what the cause of her headaches was, and so that is why I chose to see him. It was very disappointing when he told me he did NOT think this was what she had, but that he would do a spinal tap to "clear the air". When I asked him about her feeling pressure, he told me that he thought she was just "very aware" of her headaches.

Through an Internet support group, I met a mom of a Chiari patient. We talked about our two headache kids, and found that they had so many things in common. She encouraged me to read about it, and consider it a possibility. It was through her that the Lord gave me insight to the world of Chiari. She had already been down this hard path, and encouraged me to keep pressing on.

It was because of the possible spinal tap, that I wanted to rule out Chiari. You see, for some Chiari patients, a spinal tap can actually make their tonsil herniations larger, thus causing their symptoms to increase. So, I made a three hour drive to retrieve a copy of her MRI, and get it in the overnight mail to a known Chiari specialist in Chicago.

I was so anxious to get a reply, but I waited patiently. Days turned into weeks, and it was getting harder to not jump each time the phone rang. My patience had ran thin, so I decided to email this doctor's nurse just to see if there was an update or if I had been forgotten.

Right away I received a response. Finally after waiting on pins and needles for weeks I would have an answer. But, it was not at all what I had suspected. Rather, it was a brief, cold reply: "No Chiari seen, proceed with the spinal tap and send us the results and we'll discuss it at the next meeting."

Because of these unanswered questions, Rachael began to doubt herself. It was getting harder and harder for her to even consider seeing another doctor because so many of them acted as if they didn't believe her.

It was about this time that I learned of a Chiari specialist in Hendersonville, NC. He had caught my attention because Joe Ray had worked in Hendersonville when we lived in Saluda, NC. We knew the area, and had friends that lived in South Carolina. So, with my brave face on, I emailed him on a weekend. And to my surprise, he answered me back that same weekend. What?? I didn't know that doctors actually did that!!

After miraculously getting aproval from Rachael's insurance, we scheduled an appointment for August 23. That first appointment was like no other we had ever been to before. We did not wait long, and we were treated with such respect and dignity. There was no one talking down to us. We didn't feel that we had to prove our case. Our words were believed.

Her doctor is Dr. Michael J. Rosner. He is a phenomenal neurosurgeon, and a very like-able man (which is an unusual mix). We enjoyed meeting him as well as his staff. He ordered and preformed tests that no other doctor had before. The extensive tests were very difficult for Rachael. You see, by this point, she was just merely existing. She could not shower or dress herself. She had to have my help for most anything.

But all the long testing paid off. Dr. Rosner found many evidences to support his diagnosis. He found 2 or 3 syrinx in Rachael's spine. And with a failed tilt table test we learned that her brainstem was not functioning as it should, which was placing stress on her heart.

It was at this time that we scheduled surgery for October 2, 2007. HOPE had arrived. Although, we were told over and over again that Rachael was "normal", just had "migraines", and that she did NOT have Chiari, we knew this was something we had to try. I begged the Lord to close the door if this was not His will for her life. All the doors were opened in miraculous ways.















Newest Update

Journal entry by Rebecca Haines

Hello all! 👋🏻 

It’s been quite a while since I’ve updated. So much to tell, and only so many characters. We have gone through lots of changes and growth. 

Additionally, Lily has now had a fusion surgery like Rachael had. And she was able to have it with Dr. Henderson! She is doing better, but still lives with daily pain. 

Adah was added to our family in July of 2013, and she has chronic pain from degenerative disc disease and Severe’s. She is also Autistic with the PDA profile. Despite these many challenges, she is a bright and brilliant young lady!

Luke has married and has a beautiful baby girl! Rachael has two children now. And Hannah is a full time Nanny for two doctors. Abby works at Walmart, and Callie works at CFA. They are all doing well, but also struggling with various issues due to Ehlers Danlos. 

We appreciate your prayers for our family!❤️

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