Cerebral Vasculitis , major stoke 39yrs

My daughter aged 39 had 2 mini stokes a mth before she had a major stoke. She went straight to the doctor who did a CT scan with no evidence of stroke, she had serve headaches after the second one he diagnosed her as a rare form of Migraine 2 weeks later I nearly lost her. The Hospital did CT scan and nil they suspected an overdose we tried to tell them she did not after 14hrs and a MIR they told us her right side brain damage was irreversible and she had clusters of damage to the right side . They had no answers she was sent to PA in Brisbane fortunate that one doc had seen this before and diag Cerebral Vasculitis, after 3 weeks she is still in high care she came of a ventilator last Friday and has a trackie in. High doses of steroids daily and chemo drug every weeks are prescribed. They say she has had a rare stoke from the vasculitis and im lost to what is going to be her future.

I can not find info on survivors and the expected out come for her. They say she can not be rehabbed if she can not understand she flickers in and out of understanding. Early days I know, but I need help on finding survivors of this deadly disease. Please help

7 Replies

  • First of all - I am so very very sorry to hear your story and I do hope your daughter does recover as well as possible.

    I think it is fair to say that at the moment you can't really look for information about survival and expected outcomes - time will change it all. It all hangs on which parts of the brain have been damaged and whether she is young enough for other parts of the brain to take over their roles, which does happen.

    What I can tell you is that a university friend's daughter had a massive stroke in her early 20s and has recovered to be able to marry and I think have a baby. It has taken several years to get there though. My daughter's friend had a stroke at the age of 14 and was very ill for some time - she recovered to be able to go to university, works as a classroom assistant in a primary school and is having her first baby within the next week or so.

    Both the girls have handicaps, that is probably inevitable, and both had very hard paths to follow in their recovery. But in both families they refused to give up on their daughters and have worked hard with them to enable recovery of function. If the damage is relatively limited recovery is possible - but as I say, it depends on how much damage has been done and where. The MRI shows the damage but not its effect.

    In the meantime you must take care of yourself so you are there and fit when she is in a state where it may be possible to start any therapy. I hope you have friends and family who can support you - it is something no parent should have to be faced with and it will be hard. Bless you all.

  • I can't give any medical advice but what PMRpro said about looking after yourself now is vitally important. My Mum had a stroke caused by vasculitus and other complications, the worry almost killed me seeing her on a ventilator. I made myself ill with worry and stress, do not do this. Keep strong and well for your Daughter which means eating and sleeping. It made me feel guilty to do both at the time but you must. My very best wishes for you daughters recovery.

  • how is your mum, I need to know there's a rainbow at the end of the tunnel for her. can the vasculitis be stopped, will they live though this

  • My mum suffered kidney failure, stroke, pneumonia so bad she was on life support twice and of course vasculitus. She is now home and doing ok. Don't ever give up! :)

  • Hi

    I find your post very interesting and helpful but sad that they did not catch it sooner, as I am labelled "Cerebral Vasculitis ?" and Panca

    I have had 3 minor strokes which I wake up with, the first affected my speech and the second slightly affected speech and about 6 weeks ago had the 3rd which has affected my right hand side mainly the leg. They have never found any blood clots and throw me out of hospital as soon as they can. This time from Kingston Hospital they blue lighted me through to Atkinson Morley and the next day sent me to Kingston Hospital.

    Kingston GP showed a little more interest and asked me about headaches which I do not get but as I say I wake up with all symptoms of a stroke drooped face speech slur, can not find words etc.. so they have sent me to the Neuro Psychiatry, as they say the brain can set off a incorrect signal which then causes the form of "what ever they will call it?" as the Neurosurgeons say it is NOT a stroke?

    I quiet agree with one of the replies to look after yourself first as hopefully she is getting all the support and help she needs, which seems to be good, when I have had my odd days in stroke units. I will keep this/her in my mind when I see my Neuro psychiatry . Apologies for bad wording but this is one of the effects of putting sentence around incorrectly or badly written.

  • I can't believe they are doing nothing for you! They told me that if Natasha was diagnosed earlier the steroid and cancer treatment they are giving her is to stop further stokes, do not allow them to put you off, my daughter has serve brain damage and it breaks my heart to see her like this, she can not talk, or take instructions, she can recognize us and is talking though her face and hand movements, she is getting better day by day but she still goes into switch off mode. when the attack gets serve its too late, please press them to stop the attacks.

  • I will and thank you for posting this information which helps others, as today I received the Neuropysciatrist outcome which has nothing to report. Sorry I may have mis-lead you but am on Rutixmab for Vasculitis but the trigger for the FORMS of or whatever they can call them, (mini stroke in our cases) seems to be a missing link? I do have a good Vasculitis doctor who I believe in and managed out of his funding to get me on Rutiximab which did dart to help and yesterday just had next infusion which is the £rd and will be followed by the 4th.

    I will continue on them as you feel it is all such a waste of time going to A&E have scans nothing there off home but I do have one more test to have carried out which is sleep - so lets see what happens there. I need a strategy what to do, if I have a form of stroke? so will continue the fight. Thank you again and may your Natasha get stronger each day.

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