Just had the results from my mri scan that I had done in July , by telephone from my consultant at hospital , this scan was done 7 weeks after I was discharged, anyway an 11 minute phone call to say how are you feeling since being discharged, how’s the headaches and things , results of the scan at that time showed a mild swelling was still visible and a little scar tissue, and a new mri scan is being booked as a follow up with the hope that any remainder swelling will have subsided, consultant said that when I went into hospital they did not know what the cause was due to inability to take certain tests such as lumber puncture for fear of pressure dropping to much and causing brain to drop down , believe a doctor called it mushroom affect , at the time,so turned out to be a bit of trial and error, well still alive that’s for sure
Neuro consultant update hsv encephal... - Encephalitis Inte...
Neuro consultant update hsv encephalitis
Hi HC, glad to hear you are still alive. 
Sorry to hear you have had such a long wait, at least you haven't got worse in the interim. I guess that's why they they call us patients. I've had four lumbar punctures over the past year or so, memory is vague, and they do help to get a diagnosis. They give a local anesthetic so there was no pain involved in my case but they do seem to take a lot of fluid. Getting the right meds prescribed is a big help in preventing further seizures, anti-depressants helped with mood and motivation for exercise. Blood tests revealed a long-standing thyroid deficiency so they give me a thyroid med too. There's a lot to handle.
After a long wait we now get my meds in a dossett blister pack with each dose separate. If anything happens to my wife I wouldn't be able to cope with things, so they gave us a phone no. for some emergency care if needed. Support is pretty good once it finally arrives, it just takes months. Tea and toast and marmalade, evening walks around the block and some exercises.
Interesting that they scan in July and ask how you are months later when scan results should be available in days if not hours. Swelling and scars from damage make a big difference in brain function, pretty scandalous in my opinion to call and ask you how you are .... What the H are they doing?
To some extent you have to help yourself in my experience, diet, exercise and keeping busy. Not always possible for everyone.
Best Wishes for a big recovery, G2
Hi heavychunky1 and all!
New to this forum, hello! I had a seizure and a car accident so was very lucky to survive that with no injuries, nothing like this has ever happened before to me. Your situation sounds a lot like mine, was discharged from hospital 18th October with no further symptoms but frustratingly there is only a working diagnosis of HSV encephalitis as the initial lumbar puncture/PCR test came back negative, then I got a blood clot on the lung in hospital so they couldn’t redo the test. Had two MRI scans in hospital and now so have in a waiting game to have a further MRI- 6 weeks they’ve told me. I’d love a full diagnosis so I can try and get on with things, to hedge their bets the neurologist has had to tell me that there is a possibility it could be a brain tumour which is stressing me out. But I’m feeling pretty good and back to myself, just a bit tired but otherwise back to my old self. Any help or thoughts from anyone would be great to hear.
