My name is Barb and I'm doing this fundraiser to help defer the cost of the medical bills Mike and Christi have incurred over the last 2 years. Both are self-employed and this has been a very difficult road and recovery is just beginning. The story is one of strength and endurance. They are both amazing people and continue to travel this road and pray for the best outcome possible.

Their Story:

At the end of October 2023, Christi began feeling a sharp stabbing pain in her ear. The pain was grueling and often had her in tears. (Think of having a knife with razor blades repeatedly shoved in your ear) Urgent care and her GP could find nothing wrong, and the dentist concluded it was not dental related. She saw an ENT specialist who concluded there was no infection. This began Christi on her own research journey as well as a long-awaited appointment with a neurologist in Stillwater. Through her research, she found a rare condition called geniculate neuralgia which explained her symptoms exactly.

Indeed, a trip to a neurologist in Stillwater and multiple MRI adventures led to the diagnosis of extremely rare geniculate neuralgia. In layman’s terms, a blood vessel and a nerve touch each other which results in excruciating pain. It is the same complication as what results in the more common trigeminal neuralgia (AKA “the suicide disease”) but the nerve is deeper inside the skull and much smaller than the trigeminal nerve. The “nervus intermedius” is about the size of a human hair, making surgery much more challenging. To cope she was taking up to 30 Ibuprofen a day, knowing full well that it's dangerous to the body but it was the only thing that would provide some relief. A difficult choice to make.

During the course of nailing down a diagnosis, she has been put on 8 different drugs by multiple doctors which are now beginning to manifest significant side effects. These drugs do give a bit of relief, although it's hard to know which drug is helping when she's on so many. With such a cocktail, we don’t know which drugs we might be able to taper off. She had to completely discontinue cultivating her successful vintage resale business, which she was very proud of.

Surgery for this particular diagnosis is difficult because of the location of the problem and the size of the nerve, but it has provided relief to some people with this condition.

Christi consulted with the head of neurosurgery at regions in St Paul (an “in network “ hospital) who confirmed the diagnosis but said he'd only done two of those surgeries and both failed! He referred Christi to the Mayo clinic in Rochester where one of their best neurosurgeons had only done eight of those surgeries, but the radiology department confirmed the diagnosis that Regions also saw.

Through this process she connected with an online group with the same diagnosis and found a small handful of surgeons in the US who had done dozens of these surgeries at approximately 70 to 80% success rate. One of those doctors was at Mayo clinic in Phoenix, Arizona. Mike and Christi flew down to Arizona to consult with Dr Zimmerman, a pioneer in best practices for this surgery, who felt she was a good candidate for surgery. Good News! After going through the financial aid process with Mayo she was approved for surgery on August 22nd. Side note, between the first Arizona visit and the surgery date she had two kidney stones and fell and broke her ankle, all of which may have been related to medications. Memory loss, lightheadedness, & dizziness have also plagued her. Surgery is the final hope she can recover some sense of normalcy.

The financial challenge is that because Mayo clinic is out of network it will be only covered with out of network benefits. The Tholes expect the bill, after all the settled with insurance and Mayo gives a discount based on income, the final bill will be around $40-$50k. Funds raised will help pay down the bill as much as possible to provide some financial relief.

We’ve had a lot of support from loving friends, thank you all from the bottom of our hearts! And if you can’t donate, please share!