A helping hand on a long journey

Hi, my name is Kerrie, wife of Edward West, reaching out in a time of great need.

In April of last year, my husband was diagnosed with a 3.5 x 3.9 cm Acoustic Neuroma after very sudden changes in speech, energy, and motor function. He was discharged, sent to a neurologist, then a Cyberknife surgeon who ultimately decided he was not a candidate due to the size of the mass, and then referred back to the initial neurologist. We followed up with the doctor, who was exasperated and trying to find us a doctor more in line with who specializes in his diagnosis as he had only done about 20 of these surgeries, and it could leave my husband with a great facial deficit; he ultimately referred us to the USF Neuro Medical Group. During this time, my husband was hospitalized a second time, the mass had grown to where it was blocking the appropriate flow of fluids in/out of his brain, causing hydrocephalous. The day after discharge, the USF group called us for an appointment later that week. By this time, my husband was unable to consistently get up and down from a chair, wheelchair and walker dependent, and unable to function normally.

The day of the neurosurgery consult, Ed was unable to get up from the chair himself, requiring four people to help him up and get him into a wheelchair. The doctor evaluated Ed and direct-admitted him to the hospital to place a shunt to relieve some of the pressure from his brain. At the follow up visit, we were sent to an ENT who would complete the neuroma removal with the neurosurgeon, and the surgery was scheduled for July 27th. The long-awaited day came and Ed underwent an 8-hour procedure to remove as much of the mass as they could safely remove. It had grown to where it was pressing into his brain stem. The surgery was a success – they got 90% of what they could get and said Ed did beautifully during the surgery! So, he was then transferred to Neuro ICU where he was expected to be for the next couple of days. Much to our dismay, though, the Neuro Team was having difficulty waking Ed from anesthesia. They continued to try to wake him until 10pm when they had me leave, and while I expressed concern that the right side of his mouth was drooping, the Neuro ICU team stated they were awaiting a scan to make sure everything was going ok, and I reluctantly went home.

Around 2am I received a call from the hospital that Ed was taken back to surgery because he had suffered a severe stroke; the vessel that allows blood flow to the brain had a tear and clotting was above and below the tear. An emergency stent was placed to resume the blood flow to his brain, however the stroke itself left Ed with severe right-sided paralysis and weakness resulting in a 6-week hospital and inpatient rehab stay. A peg tube was also placed, as he is yet to pass a swallow study. Ed has now been home for several months: he has had physical therapy, occupational therapy, and minimal speech therapy, as the health insurance benefits for therapy have been exhausted. He has regained most of his leg use, part of his arm usage, but minimal to no use of his right hand. As you might expect, he requires someone to be with him 24/7, as he cannot care for himself. Our daughter, son-in-law and three grandchildren lived six hours away but packed up their belongings and moved in with us to help with his care. While eternally grateful for the help, it has also created extra expenses that were not accounted for.

Unfortunately with over $1.5M in medical bills having already amassed, the journey is far from over. When we went for Ed's 3-month follow-up, we were told the news that his mass is aggressively growing back: it is back to half the size it was before he had the surgery. The neurosurgeon has now referred us to radiation to try and shrink the remaining part of the mass, but they want to proceed cautiously, as the mass is now embedded in his brain stem. Radiation is set to begin early February, just after our 27th Anniversary, but we maintain hopes for a brighter new year.

Our journey has been filled with challenges, moments of grace, love, and compassion, and I graciously and humbly thank everyone who has come to help, said a prayer, or texted and called to check in. While I am not the type to readily ask for assistance, the nature of the year has led me to recognize how important it is to rely on those who are willing and able when the weight is more than you can shoulder alone. This page is in response to the outpouring of support offered for Ed’s story and the requests of many on how they could help. Your support means the world to me and my family, as it will help to pay the many medical bills that have begun to come in, the household bills that are greater due to the increased household size and allow our family some breathing room.

With grace, gratitude, and love,

Kerrie