It all started in the summer of 2020, when my normally very healthy sister started experiencing terrible headaches that lasted for long periods. They stopped almost as quickly as they started, but then her vision started to change at the end of September. Thinking it was just a change in her prescription, she went to an optometrist. It turns out that she had swollen optic nerves, and that’s never a good thing. She was referred to an ophthalmologist who ordered a MRI. Later the same day of the MRI she was told to call the ophthalmologist on his cell phone, again, that’s never a good thing. She was told that something was found on her MRI and to go to Cleveland Clinic Akron General immediately, and they were expecting her.
On October 30th, our mom drove Carla to the hospital and didn’t leave her side until I got there the next day and I forced her to go home and get some rest. They did every kind of test that they could do, all kinds of imaging and even a lumbar puncture. The doctor and I tried to keep her spirits high as I watched the fluid climb up the tube, higher and higher. The pressure in her brain was more than it should have been, but they couldn’t determine what was wrong with her. He showed us the scans and it wasn’t just one mass, it was 3. He said that he’s only seen scans like hers in coma patients, and everyone was amazed at how functional she was. Because she was so functional and because they couldn’t determine what was going on, she was sent home after 2 days and left with a follow up appointment 2 weeks later at the main campus in Cleveland.
We were bewildered, but felt fortunate.
Friday, November 13th, I drove her to the appointment in Cleveland. She aced every test they gave her and they too were amazed at her functionality. They had seen scans like hers before, and not in coma patients. It was ADEM, they were certain. A rare neurological condition typically found in children, but not unheard of in adults, and normally goes away on it’s own.
We felt very fortunate at this point. Carla had a new lease on life.
2 weeks later, she was taken back to the hospital, by paramedics this time, and this time she chose Akron City Hospital. That was the last day our mom was able to see her. That was the last day my sister was able to communicate and respond to commands.
The headaches had returned the week of Thanksgiving. The pressure in her head was so excruciating the night of Thanksgiving, no one got any sleep. The next day, she slid out of bed like a limp noodle.
Since Carla was no longer able to make decisions for herself, mom and the neurologist at Summa decided that transferring her back to Akron General would be best. 2am on the 28th, the team was there to transport her when someone did a final check, and thankfully they did. Had they attempted the transfer, she most likely wouldn’t have made it. The pressure in her brain was too severe, she needed emergency surgery to remove part of her skull and alleviate the pressure. The pressure had also caused a stroke, most likely the night of Thanksgiving.
They’ve treated her with ADEM as the most likely diagnosis, but they aren’t certain. 5 days of high dose steroids didn’t work and she just finished up with 2 weeks of plasmapheresis. She had responded to a command on the 18th of this month and they were ready to send her to a skilled nursing facility. Mom and I were elated! But our joy was short lived and she hasn’t responded since. The neurologist repeated the MRI today and there is more bleeding in her brain and the spots of ADEM show no improvement.
Carla has a very long road to recovery, and we are hoping that there is no permanent brain damage. She’s been in ICU almost 4 weeks and she will spend many more weeks, even months in skilled nursing and rehab. There are only 2 more treatment options but we are hesitant at this point and want her to rest in skilled nursing for a little bit. We’ll reassess and see if we want to try IVIG next or send her to Cleveland Clinic Main Campus.
My sister is the strongest person I’ve ever known and we can’t imagine the amount of pain she suffered through. She’s also one of the most stubborn people in the world, so I know she’ll get through this, in time.
Money donated will go towards her continued care and cover the few personal bills she has.
Thank you for reading this far, and thank you in advance for anything you can donate.
- John Wilder
- JUSTIN SELDEN
- Barbara Neill
- Lindsey Gill
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