In June 2016 and at the young age of 33, Chris was diagnosed with:
Spina Bifida Aperta http://www.embryology.ch/anglais/hdisqueembry/patholdisque03.html AND
Tethered Spinal Cord Syndrome
Chris was referred to four different neurosurgeons due to the fact they had never seen something like this before and none of them were comfortable taking it on.
He was then referred to Dr. Kim who is a pediatric neurosurgeon through Gillette Children’s Hospital.
Dr. Kim explained what the diagnosis was/looked like and that he was willing to attempt surgery on Chris, but was honest with him that he had never performed this surgery on an adult before as it had always been on young children and babies.
Chris went in for surgery December 2016. He was informed the surgery could not undue the damage that had already been done, but Dr. Kim would try to prevent any further damage from happening. At that time, they were told he had a 10% chance of losing total function of his legs after the 8 hour surgery.
After surgery was completed they had some good news as Chris began to feel relief, he was able to feel his feet again and was decreasing his need for pain medications. Sadly, two months later in February of 2017 the pain came back, and this time was worse than had ever been before.
He was then told a new MRI would be needed to further assess. The MRI showed that the spinal cord had re-tethered itself in the large tumor in his back and was being pulled down to his S4 region of the spine again. The progression was beginning again.
He was then referred to the Mayo Clinic, however, he was turned down. So now their only source of hope is a neurosurgeon based out of Milwaukee, WI who wants to see Chris. The specialist has seen & dealt with this diagnosis before and takes patients from all over the United States.
Chris was also told he had to stop working and that he would not be able to ever return to work. He was put on high doses of pain medication and more recently referred to a pain clinic.
Things only got worse. Not only does he no longer have a paycheck, but not being able to work and it not being a "on the job loss" he ended up losing his Union medical benefits and all coverage.
Unfortunately, that led them to have to apply for MN State Health Insurance. Good news is they were accepted for the whole family, which was a huge relief. Sadly, the problem they ran into was the state insurance would not cover his pain medications. This forces them to have to pay out of pocket for his medications, which can range anywhere from $250-$800 per prescription.
The Healtheast Pain Clinic Chris has recently referred Chris to Occupational Therapy, Physical Therapy, Behavioral Health, a Neurologist, a Neurosurgeon with the U of M, a Urologist and also to go in for routine steroid injections and acupuncture. His Dr. also has ordered another MRI and X-rays in which he will need to be sedated for being he is in so much pain he can't stay still.
Chris & Amanda were told to start planning for the worst, as his bowel and bladder function have declined significantly, he is becoming much weaker and has had recent falls. The tingling and numbness has started to move through his feet and his pain is unbearable most days.
His pain and medications have made it so that he is completely unable to drive, this leaves Amanda to get him to and from appointments, procedures etc... All while trying to hold down her LPN job, go to school full time for her RN, manage her own health issues (Type 1 diabetes) and care for their two young children.
Chris was told that he will sooner, rather than later, need to live in a handicap accessible house and will need a vehicle that can accommodate a wheel chair as he will slowly lose all function in his legs.
The trip from Hastings to Milwaukee is not an option by car for Chris as he can't tolerate the pain riding for any length of time, so they are hoping to fly. That means incurring airline fares for their family, hotel stays, food, etc... for 5-7 days (or more) while they evaluate & possibly take Chris on as a patient. That would require Amanda to take a week off of work as well,
All of this isn't feasible on what they are living on right now. That's where you can help.
Chris is on a two-year wait list to be seen by a judge to review social security disability benefits. Until then they are only living off Amanda’s income. With all the upcoming and current appointments and procedures things will be tough financially to say the least.
As Chris’s health declines Amanda will need to be more present and other services may need to step in, including care for their two young children.
This page was made in order to help their family during this hardship. It will help pay for medical needs, bills, transportation to procedures and appointments and to make it possible for Amanda to be able to miss some work to ensure the care and needs of the entire family are met.
Anything will help the Egginger family and will be gratefully appreciated. God Bless!
- Kathy Eittreim
- Linda Egginger
- Teresa Gazda
- Jennifer DeGonda
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