Welcome to Lena's Bent But Not Broken Blog - to account and give out information regarding her Occipital - C2 open reduction and fusion, bone marrow aspirate surgery....
The road to this surgery goes back many years, starting with Milena's genetic defect, Ehlers Danlos Syndrome. Please click on thelink below OR the gadget to the right:
....for lots of information and links on Lena's genetic defect and comorbidities.
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| Milena "Lena" Carlson (old HS Senior photo, 2018) |
Lena started this particular portion of her journey to neck & skull surgery in Feb 2020. In early February, she had an episode that she thought was a stroke. She was taken to the Emergency Room in Commerce, TX ... where she was attending her first year in college. She was transferred that night to Medical City Plano, Brain and Spine Hospital for stroke observation. The neurologist at that hospital determined that she did not have a stroke, but rather a seizure. She had two more witnessed seizures in during that stay in the hospital. She was diagnosed with "Conversion Disorder," which is a catch all diagnosis that neurologist's use when they cannot find a physiological explanation for a seizure event.
After that seizure episode, Milena was never able to fully regain weakness on the left side of her body. She had issues gripping, lifting and with feeling on the entire left side of her body. Most of the specialists she went to after this would say, "Huh? Strange." But they offered no suggestions or ideas as to why she had the continued weakness.
"Conversion Disorder" basically asserts that the patient is intentionally creating the seizures in their mind, triggered by stress and other psychological factors. Neurologists are taught to use this diagnosis if they cannot prove seizures have electrical activity or are related to a diagnosed medical condition.
MOM'S NOTE: "Conversion Disorder" can be explained here: Functional neurologic disorders/conversion disorder - Symptoms and causes - Mayo Clinic And its a bunch of CRAP. It's a total catch 22 for Lena...the run of the mill "specialists" either don't have experience with, or don't believe some of her diagnosis ... and so they don't recognize her as having any "neurological or medical reason" for the seizures. BUT she does have a diagnosed genetic defect (EDS) and several other medical conditions (Dysautonomia, POTS, MALS, NCS, MTS, Scoliosis, etc) that can be the reason for the seizures...but since most doctors don't deal with these "rare" defects and their comorbidities...they just tell the paitent "it's all in your mind, stress is causing the seizures...."
Lena followed up with two other neurologists, and both supported the Conversion Disorder Diagnosis ... suggesting Milena pursue therapy with a psychotherapist for treatment. While we definitely supported the idea that stress and the psychological impact of Lena's health issues could contribute to her seizures - the idea that those environmental and psychological aspects were completely responsible for the seizures seemed unlikely. Lena was able to get one of the neurologists to do a small vessel CT scan and a 3 day inpatient seizure testing/assessment in hopes of finding a physiological reason for her continued seizures.
Lena checked in for the 3 day stay, and they were able to induce 2 seizures within the first couple of hours, with strobe light or visual stimulation. But, the seizures did not record any electrical activity, so they were deemed "non epileptic" and they sent her home before she even finished the first full day. More "Conversion Disorder" and go-have-therapy to solve this....diagnosis. In addition, the small vessel CT scan showed no clots or issues....
At this point, Lena was still experiencing the seizures several times a week. After the first few trips to the Emergency Room, she just stopped going. They never helped her, they just told her they weren't strokes and she should go home. Soon, she could identify if a seizure was about to happen and the rest of us knew how to support her when she had one. I'll spare you what it looks like, (we do have it on video)...but it's pretty disturbing to watch. She can't talk by the end and her body is so worn out from the tension of the seizing that is just sort of exhausted for a while after. I was worried she'd find herself in the car, or hit her head on the way down if she didn't have enough notice.
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DAISY (black lab & mallinois mix) |
Lena was able to find her service dog, Daisy in late Spring...which meant that she could start training her to recognize (and hopefully support during) Lena's seizures. She started investigating a couple of conditions....Chiari Malformation and Craniocervical instability. Problem was, there were no doctors that treat these conditions in Dallas, or in Texas. We had a good references for a doctor in Utah...but after taking the trouble to work out sending her records and imaging for review.. the doctor simply send a "decline to treat" message. She wasn't even sure if he had diagnosed her or not.
So the next specialist that came with good references was in Maryland. Lena sent her imaging and records for review, but when they called for the phone visit - she discovered that the head neurosurgeon was not covered by insurance. Sigh. But, upon further investigation, there was another doctor in the practice that WAS in her plan! So after a phone visit to confirm possible diagnosis, Lena flew to Maryland in late July for an office visit and more imaging.
The Metropolitan Neurosurgery Group in Silver Springs, MD diagnosed her with Chiari Malformation and Craniocervical Instabiity. They sent her home with orders for more testing, (to rule out other conditions) and a neck brace. The plan was for Milena to wear the neck brace for 4 to 6 weeks and IF she experienced relief from her seizures, weakness, headaches, brainfog, etc then they would consider her a candidate for surgery.
Lena put on the brace the first night.
Within the first 12 hours the numb and weak left side started to tingle and she regained some strength in that left side! It was amazing, but it didn't last. But the theory was that supporting her neck and stabilizing the hypermobility tendencies...would help her nerve and seizure issues. Probably not SOLVE them, but help them.
Lena started school in Fall 2020 amid COVID and continued seizures. She worked as an RA in charge of a floor of freshman AND completed her full time online classes. Busy for a completely healthy person. Over the next several months, she would deal with repeated visits to the ER or Urgent Care for seizures, staph infection, repeated bouts with ovarian cysts, and other GI issues and UTI infections. She also was monitoring severe tendonitis in her right (dominant) wrist that was interfering with her ability to take notes/write. Lena was juggling her full time classes, working, and 4 to 6 appointments a week: doctors visits, therapy appointments, and a variety of testing and imaging...
Finally in December, she had a follow up with her doctor from The Metropolitan Neurosurgery Group...and the consensus was that she wanted to and needed to move forward with setting a surgery date. We weren't sure when. She had an inpatient hospital stay in mid December, and then surgery on her wrist to shave the tendon and do a biopsy on December 23rd. The tentative date was set for Feb 2nd....but we found out right before Christmas that they could schedule the surgery for January 13th, 2021!!!
