Alison's Unusual Health Challenges

Twenty-five year old Alison (Hein) Vangness has been forced to take a rough health detour this year. One day in April of 2023, she and her husband Drake were going out for coffee. She started having an excruciating headache that began without any known trigger, and within 15 minutes the headache was at its peak. By the time that they had gotten back home, she began vomiting. This was the start to a long rough road ahead. As someone who normally struggles with chronic migraines, Alison could tell that this was unlike a “normal” headache, which is how she described it to doctors. She was experiencing vertigo, dizziness, nausea/vomiting and excruciating pressure throughout her head while sitting up or standing, but immediate relief when lying flat. Weeks passed without any changes, and after multiple trips to local emergency rooms and the Mayo Clinic, she was sent home without any straight-forward answers. All Alison could do was stay in bed with the curtains drawn to avoid the debilitating symptoms.

Luckily, at her last Mayo Clinic ER visit, Alison spoke with a neurologist and was immediately given a referral to see a neurologist on May 26th. It was determined then that what Alison was suffering from was called “Spontaneous Cerebrospinal Fluid (CSF) Leaks” - spinal fluid leaks that can appear without any known cause. When the fluid leaks out, the volume and pressure of fluid in the skull drops, causing your brain to slump. This “brain sag” can trigger severe, relentless headaches, and can also cause vision and hearing disturbances, seizures and other symptoms.

It was recommended that Alison undergo a blood patch procedure on June 20th to attempt to fix the leak that she was experiencing. (After she was done she had a wheelchair ride to the Mayo ER to see her Grandpa Larry who was recovering from his lung lavage.) Although Alison immediately could tell that the blood patch was unsuccessful, her neurology team insisted that she wait approximately 4-6 weeks to see if there was any sign of improvement in her headaches. After taking four weeks off from work to recover from the surgery, the nausea and vomiting persisted, so Alison contacted her neurology team once again.

Because the blood patch had not worked, she then went through a painful fiducial marker placement on August 4th to prepare for a diskectomy surgery to repair the large leak in her spine. Her surgery was performed on August 7th. She was hoping that would help her get back to normal but found herself still having headaches and nausea. She had another spinal tap on October 20th which confirmed yet another leak. She met with her neurosurgeon and neurologist again on October 30th. The surgeon said that in the thirty years he has worked at Mayo, no one has ever seen a leak in that location of the spine before. He suggested she have another myelogram to verify the leak and then plan on undergoing another surgery. Her challenges are not yet over.

Alison had tried to continue working after April 23rd but finally had to quit because of the unpredictable onset of the terrible headaches. Some days her life can seem normal but other days she gets up and has to sit back down because the pain about knocks her over. There are days she can’t move out of bed and can’t stop throwing up from the pain. Caffeine is about the only thing that is recommended to help the headaches. She has many questions: “Why does this keep happening?” “How long will it continue?” “Is there anything I can do differently to help?” The doctors don’t have the answers.

As a newly married couple trying to pay bills and rent with only one income instead of two, the unexpected and ongoing health issues have caused not only financial burdens, but emotional stress as well. This has put them in a very difficult financial situation. Alison said it gives living “day-by-day” a new meaning. Drake has tried to take off work whenever he could to drive her from Bloomington, MN to her many appointments and procedures in Rochester but is limited in his available time off. Other family members help when they can.

If you would like to assist Alison and Drake financially, any donations will be greatly appreciated! All funds will go directly to helping them pay important bills/rent and will help them immensely with their unplanned expenses, such as driving to appointments. Any funds received will lighten their load and will help make their rough road a bit smoother as she continues dealing with this life-changing serious health issue.

Alison and her family thanks you for your concern and help.