My Father of 71 just been advised he may have cerebral vasculitis. Shell shocked and unsure what to expect

10 weeks ago my father was bright, intelligent, engaging and fairly fit. Then 5 weeks of double/blurred vision, weight loss, confusion. Finally admitted to Pembury Tunbridge Wells A&E 5 weeks ago. Put onto a Demetria ward, and seemly little urgency in resolving and very poor communication. Finally saw Dr Lloyd yesterday, who said it was possible Cerebral Vasculitis and he should be in Kings.. At last some action and sense of urgency. But family distraught and yet to understand prognosis, outcomes and potential impact ..good or bad... If this condition isn't curable... What can we expect?

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  • Hi Steve, I'm sorry to hear your Dad is ill. I don't know much about Cerebral Vasculitis, but I'm sure that someone will be on tomorrow who can help you.

    regards,

    sandra.

  • If they suspect active vasculitus they may start steroids treatment pending further tests, make sure they are checking kidney function, vasculitis strikes here very often.

    My mum has just gone through this, ask here there are plenty of people with helpful knowledge.

  • Hi Steve

    I'm 54 and also have cerebral vasculitis. I started off with headaches and confusion etc and was taken to A&E where they thought I had a bleed on the brain. After many tests I was thankfully transferred to Atkinson Morley Hospital, Tooting. I spent nearly 2 months there - I lost my memory. My cognitive thoughts were all over the place. I had lumber punctures, mri's, CT scans WHILE THEY TRIED TO FIND OUT HAT WAS WRONG WITH ME. Eventully, I had a brain biopsy and hey presto, they found the vasculitis. This was 2 years ago last month.

    I had an aggressive course of chemotherapy and high dosage of steroids. I am now leading a fairly normal life (sometimes) but there are bad days.

    I need to go to work now so can I get in touch after and I'll fill you in on more?

    It's worth looking at the vasculitis uk website - very helpful.

    Best wishes to your dad

    Lorraine

  • Hi my husband was diagnosed with cerabal vasculitis on the brain last september we got him back home on the 8 th of April this year he as no movement in is left side and no speech he's fed through a peg in his stomach and is 24hr care he was only 50yrs old when this struck him I've had to give up my job to care for him Hes finished his course of cyclophosimide and his now on 5mg of mycrophenolate twice a day plus he's down to 5mg of prednisone once a day no one can say what the future is going to be hope they get your father on the right treatment straight away and everything goes well for you

  • Hi Steve, my 57yr old husband Colin was diagnosed with Cerebral Vasculitis in August 2013. Started with generally not feeling well for months followed by a few almighty headaches in sept. 2012. Had MRI scan which showed some high lesions consistent with small vessel ischemic changes but because he is type 2 diabetic, just presumed it to be in keeping with his vascular risk factors. Continued having mild headaches, nose bleeds, kidney stones, high systolic reading, shoulder pain, all blamed on the diabetes or the medication he was on. How wrong they were! He had his first minor stroke in April, was being treated as an outpatients for 3 months. After months of my telling his stroke consultant that something else was going on, finally after the 3rd stroke he admitted that he needed to see a Neurologist. 5 weeks in Salford Royal followed with every test you can think of. Then finally diagnosed in August. It has always bothered me that they have never found anything for a positive diagnosis but only on the conclusion of ruling everything else out that it could be and his history. He has had 9 strokes to date, It has been left with some residual problems from the strokes i.e. slurred speech, balance, confusion. He used to be a very talkative, sociable person, but has changed to being very quiet as he says that he can't think of anything to say. He is on 3gs daily of Mycophenolate Mofetil and down to 18mg prednisilone (started on 90mg). The Mycophenolate causes him fatigue and tiredness. The preds caused severe water retention, which is under control now, and the common "moon face" and muscle weakness. The Mycophenolate takes 3 months to kick in. Not had any strokes since October. Colin is unlikely to be able to go back to work as a Safety Standards Manager and he is finding it hard to adjust as is all the family. He has just been told he can start to drive again which is great for him to be able to get out more and have a little independance. He is able to look after himself as I work part-time. I think it's a matter of trying to keep active as sitting in a chair all day does a lot of damage mentally and physically. He'll never be the same again but he's here and life is worth living, just need a bit of adjustment.

  • Dear Steve

    So sorry to hear about your father's illness.

    My husband has had wonderful care from Kings and we have every confidence in them so I do hope will respond to treatment very soon

    With our very best wishes

  • To everyone who has replied above. Thank you all so much for taking time to reply and your best wishes. They are warmly received. I am sure that there will be lots of questions as we go through the coming weeks. It appears that conditions and symptoms vary considerably, and with the right treatment the condition can be managed to some extent. I am sure once we get to Kings, there will be some clarity and hopefully a clear course of action. Will keep you all posted as things progress...thank you all once again. Steve

  • Hi Steve, Cerebral or CNS Vasculitis is a rare and complex disease, difficult to diagnose, very variable, so not easy to treat. Like most types of vasculitis, the outcome depends on prompt, appropriate & effective treatment. For that reason it is essential that your father gets a referral to somewhere where they do have extensive experience of the disease, such as Addenbrookes, Cambridge. I don't have any knowledge of treatment at Kings.

    BW

    John

  • Many thanks John. Ironically my father worked at Adenbrookes for 40 yrs but moved down to Sussex this year. Pembury have been pretty awful, but since seeing the consultant on Monday I think that kings will be a good option too....

  • I've been fighting cerebral vasculitis since 1994, so soon to be 20 years, and I'm still here and smiling. My disease has been a bit difficult to treat - it behaved nicely after diagnosis in 1997 and initial treatment, then relapsed majorly in 2004. But as I say I'm still here, and positive, and the outlook can be good. So think positive thoughts. The key thing is to get the diagnosis and start treatment. Without it the disease is progressive and can be very dangerous, but treatment can do wonders. Some people even go into drug-free remission, where the disease burns out completely. So please do not be too alarmed. Best wishes to your Dad and all of you.

  • Viv, many thanks for your message. Very encouraging. I sense that his condition not as aggressive as it could be. Current symptoms are double vision, which has improved to just blurred. He has Uveitis as well as a side effect to the vasculitis. And some level of confusion and memory loss, which seems to come and go. Not much else of note symptom wise... Still waiting on a bed in Kings!

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