Brain shrinking

[Kw55]

My husband has had encephalitis for 16 months now and no treatment has worked so far. He has had steroids, IVIG, plasma exchange and rituximab and hes been deteriorating since the day he was diagnosed. Doctors have now said his brain is shrinking but I have not heard this from anyone else with encephalitis. Has anyone else experienced brain shrinkage??

[Hidden]

is this not the swelling has shrunk, which is what the treatments were for?

[Kw55 in reply to Hidden]

Unfortunately not. It's his actual brain that is shrinking not the swelling. This means that his brain is also running slower than expected and is why he is now struggling to do more and more things

[Paula-38]

Not that I'm aware of, and nobody has mentioned it.

[Dublinboy78]

My daughter had encephalitis and we were told the same thing. I don’t have the medical background to explain the exact reasoning but on her MRI we were shown there were a lot of white parts. This we were told was the encephalitis, and this was what was causing the brain shrinkage. So it’s not the brain that’s shrinking but the parts not effected by the encephalitis that are getting smaller.

I don’t know if it helps but Rituximab didn’t work for my daughter but she was treated with Tocilsimab and she recovered very well.

[NebraskaTexas]

I'm very sorry you are going through this. Did they ever diagnose what type of encephalitis your husband has? From the treatment you have mentioned it sounds like autoimmune encephalitis.. This is the same treatment plan my husband had. He did respond to Rituxin however he had a relapse so he had 5 treatments of Cytoxan and has been remission since then. He still has brain injury from the encephalitis. Are the talking about brain atrophy? He has brain injury which will never be repair. White area on the MRI. However he can build new pathways to learn and remember. It just takes lots of time, patience, love and repetition.

I pray that they will be able to get your husband encephalitis under control.

By the way... his maintenance plan to keep the encephalitis at bay.. is taking cellcept and prednisone. He will be on these meds for the next year and half and then they will start weaning him off. I hate to tell you... this is long term process.

Take care and God bless you.

[alpappy]

Yes I has the same treatment regime MRI scans shows some brain shrinkage..not too severe as it is also age related But that has stropped now and I had an MRI last month ans sice 2019 it is now stable. I have foggy periods but they are short My meory is really bad around the illness and I have lsot taste and smell( may be covid related) What helps me is Zinc every day and vitamin D no alcohol and I try to get 6 hours good sleep every night Dr Alan Papert

[The_Bass]

Sorry to hear this Kw55 … I haven’t heard of brain shrinking before. I’m sure you’ll have asked them lots of questions already but worth pressing the doctors to find out exactly what they mean and what they can do in the short and medium term for the journey ahead.

Sending you all the best wishes.