I have a friend who, 5-ish years ago told me he was having episodes where he would suddenly not recognize where he was. I had heard of that as something like déjà vu, and after doing some googling I saw the term jamais vu. It was freaking him out, happening more and more. I suggested a doctor visit. His PCP told him he needed to get more sleep.
I suggested he get a second opinion which led to a neurologist which led to another neurologist. Last year he finally had a diagnosis of mesial temporal sclerosis and resulting epilepsy. Medication was tried without improving his life. He lost his drivers license, of course.
A couple months ago a surgeon opened his skull and mucked around with his temporal lobe. From what he says he feels “normal” for the first time in a decade, which is great. He thinks seizure frequency is decreased. He does have some strange memory problems. We were drinking beer and talking, when he pointed at his glass and asked what it was called. I said “beer?” and he said, “NO! What is holding the beer!!!” So I said “a glass” and he was happy.
Anyone have MTS? Anyone have their temporal lobe worked on surgically?
I’m mainly seeking suggestions on how I can help my friend with his situation. It was pretty unnerving talking with him and seeing sudden major gaps in his memory. He remembered I have a gf, even remembered that he liked her, but he couldn’t remember a thing about her appearance. I showed him pics on my phone and his reaction was strange. He knew that he knew her. He knew that he’d been at our home. But looking at her picture didn’t trigger any memories in that regard. When I mentioned my gf by name, he had a revelation and said, “that’s the same name as my gf”, the woman he’s lived with for two years.
This may seem like out of the blue, but your friend might benefit from working with a speech pathologist to help him rehab from the disorder and the surgery. They do a whole lot more than speech, which I found out when I needed cognitive rehab after a traumatic brain injury from a car accident. It was enormously helpful and I learned many adaptations and accommodations that I still use 3 years later. Speech pathology made my life much better around cognitive processing and executive functions. Also, some psychiatrists do that same kind of cognitive diagnosis and treatment, there’s a fair bit of crossover with neurology, so that might be another source of treatment. The Neuro would did the surgery is not likely to do a lot of rehabilitation, IME.
I’m going to talk with him about this, thanks! I’d have never thought about it. Luckily his medical care is all through Social Security (I think). He’s only 40, but he’s had all kinds of problems in those forty years.
More broadly there are rehab clinics designed for stroke patients with memory difficulties that may have techniques to apply. Functionally it’s similar to a small stroke in the hippocampus.
Possibly a neuropsychologist could clarify more exactly what the deficits are and help identify what channels work best to build on as well?
Going out on a limb here, but your friend doesn’t have to get his surgeon doctor’s permission to seek out rehabilitative treatment. Speaking as a nurse of almost half a century, surgeon’s tend to be notorious top gunners and don’t want to admit that cutting is not the be all and end all-that other professionals can augment the slicing and dicing to get to an even better result for the patient. They often do not like to share the glory and, IME, neurosurgeons and orthopedic surgeons are the worst of the bunch. He can get a referral from his family doctor, doesn’t have to be the surgeon. Waiting while you are struggling with the activities of daily living is over-rated. That’s what neuropsychologists and speech pathologists could help with both in the short term and in the long term.
I’ve also been living with a traumatic brain injury myself for 3 years and know whereof I speak. I have used both neuropsychologists and speech pathologists, with good results. It certainly can do no harm, except perhaps to the surgeon’s ego.
I attend (virtually since Covid) brain injury support groups sponsored by my state’s Brain Injury Alliance. Most states have one and you might find it useful to participate in as a friend and support person. PM me your state and your friend’s state and I will try to PM back links to your nearest Brain Injury Alliance.
Your friend is fortunate to have you in his corner!