Hi, my dad suffered encephalitis this year from severe covid. He has been left with locked knees bent in rehab and the only way to straighten his legs is to have Bilateral Hamstring tendon release surgery to treat knee contractures. As well as being extremely concerned if he’ll ever walk again, we’re very worried about him having a general anaesthetic after a brain injury and being so ill on a ventilator. Would like to hear your thoughts and experiences please.
Hi Miltch,I'm so sorry to hear about your poor Dad especially after having Covid Encephalitis oh my goodness.
I had Herpes Simplex Encephalitis back in the 1970's just after my first birthday (another type of viral).
It's certainly worrying for your family. Is your Dad taking any medication for anything because I have never had a general anaesthetic but I have had the occasional local anaesthetic for a tooth filling. I always have to inform them what medications I'm taking, and also because I have also got profound Obsessive Compulsive Disorder - OCD so I have to observe everything that's going on in the room and what is touching what. It would have to be something I couldn't avoid like really serious before I would have to be put out like if I was to have an operation like your Dad, but I don't think that would be for some time yet.
I would if I "had to" though.
I really hope this helps you to help your Dad.
I'm one of the volunteers for the Encephalitis Society and I love helping people.
Remember I'm always here for you and everyone on here.
Paula-38 🤗
Hello Miltch. I'm really sorry your Dad has been so unwell, it must be so frightening for you and your family. I had encephalitis in1980, at the age of 12. Once I came out of it, life was pretty normal, aside from some very obvious difficulties. I've had to have quite a large number of operations, most of which have been under general anaesthetic. The only thing I've ever noticed is that it stays in my system for a long time. I can't see it being more of a problem because of the encephalitis. It's always best to make a note of any questions you have and ask the surgeon when he sees them next.
Also, I've noticed how scared people often are when going for an operation and will always tell them that when you have an op they give you pre-meds, take you to theatre, ask you to say something, like counting down from 10, you go to sleep, then you wake up and it's done. That may help him feel relaxed about his surgery. I wish you all the very best and hope he's soon much better xxx
Thank you.I think the main concern as well as his brain injury was the fact that he didn’t wake up for 5 weeks after the sedation from the ventilator and that was only 4 months ago. Just feel very scared at the thought of them putting him under anaesthetic but it’s his only hope to walk again.
So sorry to hear what you’ve been through from such a young age. I wish you well.
Thankyou Mitchell,As with all surgery it's different for everyone and it's important for each person to decide if surgery is the right thing for them. I'm waiting for a date for surgery on a badly bulging disc. I've been told the risks and have decided that I still want to have the surgery. I feel that I'm at as much risk in my daily life as I am having the surgery and I want to be able to come off painkillers. That's my choice and I feel it's the right one for me and my family.
Have you spoken to your Dad about your concerns? It's really important that he knows how you feel. I hope you manage to get the answers you need
xxx
Hi Milch, everyone's experience with Enc is different and so is the case with anaesthetics etc. Every surgical procedure is always a gamble however young and fit you are and in my experience the medics are very quick and adept at covering their tracks and blame shifting if things do go wrong. Having said that the ward staff and others are great in my experience. It's the high-ups that you have to watch, some can be remarkably unpleasant. Keep a diary of everything and ask lots of questions,. But treat the staff with respect and don't go looking for trouble.
I'd go for the operation,The medics seem to know what they are doing and have had plenty of practice in the use of anaesthesia. I've had general anaesthetics several times for a variety of operations, hernia, testicular cancer and dental work and always woken up afterwards.
I've also been in an induced coma for about three days after suffering a non-stop seizure. I've had about six seizures and hospital admissions so far and a lot of memory loss due to to the Enc and ensuing brain damage. The staff seemed very capable and confident the whole time.
Rehabilitation after surgery is largely a personal responsibility and keeping positive, eating well, exercising, taking medication and having support are all vital.
When I last came home I could barely make it from the bed to the toilet, now a few weeks later I'm going on nightly walks of about a mile round the block. My wife keeps an eye on me and does all the shopping, cooking and cleaning. But I'm slowly getting back into helping and doing my share. I hope this helps.
Best Wishes,
G2
Hi Mitch
Firstly thank you for joining this community, here we all understand how you feel and what you and your family are going through.
You and you’re family have so much going on right now, it must feel overwhelming at times. When I was sick with encephalitis, my family had many worries regarding my treatment. They had regular (sometimes daily) conversations with my doctor about their concerns and asking questions about the plan of action. How is your relationship with your dads doctors? They are there to help your dad but also to support you and your family during his illness. I would definitely recommend expressing your concerns, worries and feelings to your dads doctor. They should provide support and reassurance.
The Encephalitis Society have resources for the medical community: encephalitis.info/Listing/C...
The Encephalitis Society also has support for you and your family: encephalitis.info/support
