My husband had an episode that he was taken by ambulance on May 4, 2019 that was misdiagnosed as vertigo and inner ear trouble. We were told to expect this vomiting, loss of balance, etc to happen again….typical Wallenberg symptoms we now realize. His balance was terrible for several weeks, but was able to walk without aid after some time. Fast forward to July 19th 2019. He rolled over to put the phone on the bedside table and instantly began to vomit and had no balance. By noon the next day, the vomiting stopped, but he had absolutely no balance at all and could not walk. By Sunday, the 21st, his lips began to tingle, he lost feeling in half of his face and had a hard time controlling his arm movements. Within 15 more minutes he lost his ability to swallow.
Immediately went to ER where, after a CAT scan, we were told he had had a stroke within a few months (May 4th episode we are sure) and they would do an MRI the next morning. Long story short, he was finally diagnosed with Wallenberg Syndrome and had a brain stem stroke,and had a feeding tube inserted. Thankfully, he had a spontaneous recovery for swallowing within a month, although he was very limited in what he could eat. He spent 3 weeks in intense rehab and came home with a wheelchair and a walker.
He was released from physical therapy walking pretty well on his own in late October. My question is this….for the past month his balance is worsening. For the past few days he has said that the “tilting” feeling has returned and that he is having trouble with feeling his right leg on floor. The droop in his eyelid is a little more pronounced that what it was. We were just wondering what others have experienced in their recovery.
Thank you very much
Tera, I'm a Wallenberg's survivor of 9+ years. Recovery is not linear. Your husband will likely have many ups and downs and twists and turns as he continues to recover. He may recover 100% or he may carry residuals (like me) the rest of his life. Brain stem injuries are very complicated and very little is straightforward, especially when a disorder as rare as Wallenberg's is in the picture. There is a group of survivors and caregivers on Facebook that I co-admin. We're a close-knit group that is more like a family. The name of the group is Wallenberg's Syndrome or Lateral Medullary Syndrome. I'd highly recommend that both you and your husband join. You can always reach out to me as well at [email protected].
I echo Eddie’s comments. Recovery from Wallenberg sometimes seems to take a meandering path. It’s affected by weather, diet, exercise, sleep, and stress among other things. If you choose to join the FB group, you’ll find that some have symptoms virtually identical with yours, while others are more (or less) so. Taken as a whole, it’s an invaluable resource and provides education and hope in equal measures.