Zoee’s Story
In January 2026, Zoee began having a sore neck and headaches. At first, we thought that they were the result of sleeping in an odd position, maybe it was her pillow, etc. You know, the normal things that would cause those symptoms. The symptoms continued for a couple of months, at which time we made an appointment with her pediatrician to have her checked.
We were headed to Disneyland and wanted to get her seen prior to going to make sure that there was nothing emergent that needed to be taken care of. So, at the beginning of March, we had her seen. The doctor didn’t feel like there was anything that needed to be taken care of right away, so off we went.
In April, we met with a neurosurgeon at our local children's hospital. They ordered MRI scans of her Cervical, Thoracic and Lumbar Spine. Zoee had the imaging completed and the next day we were to have a telemed appointment with the doctor to discuss the results. The office called about 1 hour prior to the appointment to make sure that we were still planning to attend, ask if anything had changed and what her pain level was currently at. When she told them it was 10/10, they had us take her immediately to the ER, where she spent 9 hours and was then admitted to the hospital overnight.
During this overnight visit, we saw a neurosurgeon who advised that the issue could not be resolved surgically and suggested that we follow up with the pain clinic. Keep in mind that NOTHING had touched the neck pain or the headaches and she was also having numbness and tingling in her arms and hands.
As a mother, I was not satisfied with that answer, and we made an appointment to see the neurosurgeon in office a few days later. They advised that though they weren’t opposed to surgery, they couldn’t guarantee that it would help. Zoee was having constant headaches, and nothing was helping. They opted to give her trigger point injections in her neck. This didn’t really help the pain, and we were back in the ER 3 weeks later.
During this visit, she was in the ER for 5 ½ hours. During that time, they gave her Tylenol, Toradol, Oxy, Morphine and Dilaudid! Spoiler alert, they didn’t help. They admitted her for what would be a 5 day stay with no more answers than we had before and the same neurosurgeon that we had seen in office stating that this could not be fixed surgically. I suggested that they needed to look outside the box because she was clearly an outlier. They didn’t listen to her and they didn’t listen to me.
At this point we had tried: Tylenol, Ibuprofen, Toradol, Imitrex, Excedrin Migraine, Aleve, migraine cocktails, Oxy, Morphine, Dilaudid, gabapentin, Lyrica, trigger point injections, acupuncture and probably more that I am forgetting. Nothing relieved the pain. The doctors knew this at the second hospitalization. The suggestion was to follow up with the pain clinic.
In June, I had enough and posted on a Facebook site. Within hours I had people telling me that we needed to go see Dr. Feldman and Dr. Asadi at Paley. The next morning, I had messages on Messenger, and we were able to connect with them. After having a Zoom call with each of them, we made the decision to come to Florida and see them in person. This was the BEST decision that we could have made.
The local hospital did not even do brain imaging to find out the issue (or if they did, they didn’t do the correct imaging.) One might wonder how they could tell us that she did not have Chiari 1 Malformation without imaging, and I wonder the same thing. Although according to Dr. Asadi, this is “super, ultra rare”, he was able to see that the Chiari Malformation was causing an issue and since she had tried literally everything she could he could do surgery to give her some relief.
Zoee had Chiari Decompression surgery and when I asked her in the recovery room how her head felt, she told me that she didn’t have a headache! For the first time in 7 months, she was headache free! She was so compressed that her skull was indenting her brain. Dr. Asadi removed 2 cm of bone and she has had no issues since. She also no longer has the tingling and numbness in her arms and hands.
I would tell ANYONE that is having issues to see Dr. Asadi and Dr. Feldman. Zoee will be having surgery for spinal stenosis in November and I know that her experience with that will be just as amazing. These doctors truly know skeletal dysplasia and the issues that go with it. They know what to look for and what treatments work.
