It’s been a while since I updated family and friends about Wil’s brain issues. There have been developments since the last time I updated everyone. For those of you who don’t know about Wil’s brain history, here is the link to my first blog about his brain issues that explains his condition:
https://ttpernia.blogspot.com/2020/02/wils-brain-surgeries.html
After that surgery in February 2020, we had 4 great years with no worry about Wil’s brain. That ended in 2023.
Unfortunately, 2023 was a pretty bad year for us. Wil lost both parents to terminal illnesses, his dad in January and his mom in February. Then in summer of 2023, the pain returned to Wil’s face. His trigeminal neuralgia was back. It got to the point that he could hardly bear to shave and it was difficult to eat. He had to go through all of the tests all over again and get through the insurance referrals and red tape. While he was doing that, my mother passed from a rare form of dementia in August.
Finally Wil had yet another craniotomy on October 1, 2023, to remove the cyst that had regrown. Unfortunately, this time, the cyst had adhered itself to some delicate brain structures, including his basilar artery. Trying to remove the cyst wall from the artery is impossible without risking Wil’s life. It would be trying to remove duct tape from a water balloon. You’d risk rupturing the balloon. If Wil’s basilar artery ruptured, he would be dead.
However, the doctor was able to remove much of the cyst and decompress the nerve. This relieved the pain completely, but left Wil in danger of the cyst regrowing. The doctor mentioned that there were radiation treatments that might keep the cyst from regrowing, but Wil had to completely recover first.
This recovery was more complex, because more cranial nerves were affected. He was sensitive to light and motion. He had difficulty with balance and walking straight. He could not move the left side of his face. He had some double vision and trouble focusing. His left eye wouldn’t close completely and he was deaf in his left ear.
Wil moved directly from 5 days in intensive care to 10 days of rehab. The physical and occupational therapists were great and Wil worked very hard. He made remarkable progress. His sensitivities to light and motion faded. He regained balance, focus, and strength. He had some interesting deficits to overcome that were discovered in therapy. He could not walk toward a mirror without getting extremely dizzy. That was the last hurdle he conquered.
Once he was home in mid-October, we continued therapy. Wil wore a gait belt so I could hang on to him as we walked up to 2 miles every day around the neighborhood. We played corn hole. He walked around tossing a ball up and catching it. He kicked a ball around the yard and we played frisbee. We worked hard on his hand-eye coordination.
We also worked hard on Wil’s vision. He had trouble changing focus from distance to close up. We used vision convergence beads to fight double vision. We used artificial tears to keep his eye from drying out, because his left eye wouldn’t close completely, though it watered constantly.
In late November, my father fell and broke his pelvis, forcing me to divide my time between Wil and my dad, as I navigated my dad through a hospital stay and rehab. It was a grueling month, having Wil recovering at home and Dad in rehab.
It was mid-December before Wil was able to return to work. His face was still drooping and there is no therapy for that. That just takes time. His eye was still bothering him and he was still deaf in his left ear, but he was ready and able to return to work. On December 30, my father passed from complications of his broken pelvis and dementia. It was a hard blow at the end of a bad year.
Things slowly improved in 2024. Wil’s facial droop slowly improved. He began to see a neuro-opthamologist about his eye. Fortunately, his unclosed eyelid never caused any damage to his eye or vision. We began a regimen of gel in his eye at nighttime and continued artificial tears.
In June of 2024, Wil saw an audiologist and we found out that the deafness in his left ear is profound and irreversible. We will never know if it was caused by the extreme noise of the bone saw so close to his ear repeatedly or by damage to his eighth cranial nerve. However, they thought he would be a good candidate for a cochlear implant, so we are pursuing that route. Wil has his first appointment for that in Birmingham in October. He can’t have it done locally because of the ongoing problems with the brain cyst. He has to see a neuro-otologist, which means we have to travel to Birmingham.
Meanwhile, this summer of 2024, Wil has had some minor intermittent facial pain, mostly around his left eyebrow. His facial droop has almost completely resolved, though he still struggles to raise his left eyebrow. His left eye is now closing completely and it is really nice to have his smile back.
Today, Wil had yet another MRI. I’ve lost count of how many MRIs and CT scans he has had. We saw Wil’s neurosurgeon about possible radiation treatments to stop the cyst from regrowing. So far, there is no evidence that it has returned, despite the minor facial pain. Still, the doctor says that the cyst may surely regrow without treatment.
So, Wil has been referred to an oncology radiologist for treatment similar to gamma knife, only less concentrated. Once the referral is approved, the neurosurgeon will work with the radiologist to map the contours of the remaining cyst wall. Then Wil should receive treatment that hopefully will stop the regrowth of the cyst.
If that is successful and Wil receives the cochlear implant, he may finally be healed by 2025. Right now the long journey is ongoing. Stay tuned for developments in the upcoming months.
