Hi I've experienced 5 vacant and collapse episodes and have Chiari 1 Has anyone else had this?

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Hi I've had chairi 1 malformation since 2011 and I've had five episodes where I collapse but conscious at the time each time getting longer in time it takes to come round . The last was in January this year just a month later I had a headache like none before like your head was ready to pop ever since then my symptoms are growing rapidly worse as week by week headaches neck pain dizziness weakness in my legs and arms and the list goes on .

I'm a self Employed Carpenter and since my driving licence was surrendered my world has crashed as I'm not permitted to work as its to dangerous for me and others and the pain is never bearable anymore.

Has anyone had dealings with critical illness claims for Chiari 1 Malformation ?

Also last year I was attacked and hit over the head and people was stamping on my head would anyone know if this could be significant to the illness progression ?

After being at the hospital last weekend for a suspected bleed to the brain and returned home I've been prescribed Amitriptyline which isn't making any difference even though the dosage is increasing has anyone had any other prescribed drugs to treat the pain and I also take solpadine plus which sometimes takes the edge off things .

I'm worried about surgery as so many cases are different I'd like to get back to working and walking surfing snowboarding etc is recovery slow ?

Any information would be great fully received as ie read so many information sites many thanks Paul.

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  • Posted

    Hi paul,

    When u say collapsed episodes, what exactly do u mean? Is it when u do certain movements and u blackout, u r conscious but everything is dark. It takes a few seconds and then u start getting ur vision back followed by nausea and vomiting and a feeling like ur head is going to explode. Also sensitive to light and noise. If so, these r some of the symptoms of chiari. I am surprised that u haven't had decompresion with everything u have gone through.

    As for surgery, everyone's recovery is different it can take weeks, months or years to regain ur life back. Just a reminder that surgery is only to relief what u r experiencing. There is still no cure for chiari as far as I know, if anyone knows anything different, please let me or us know.

    Also find a doctor that is knowable in chiari.

    If u decide on surgery, I wish luck and a speedy recovery.

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    • Posted

      Hi Hope

      When I have the collapse episodes each one has been different as to what I was doing the last was when we sat down for lunch brake and the previous was when holding a drill above my head others where when digging in a trench holding up a support prop and whilst standing up cutting some materials.

      So I can never know when it's going to happen.

      I do remain conscious and never fully black out but lose all functions of my body , I can't speak and dribbling with tingling in my fingers .After I havea thumping headache 8/10 and fell sick and nausea . The paramedic checked all vital signs and we're all normal by the time they got there .

      I'm under a neurologist who is putting me through many tests which include MRI EEG CT ultrasounds on my neck for the blood flow 24hour ECG and a scan on my heart so I think she is doing all to eliminate certain areas. I had an MRI in 2011 and was diagnosed with CM then only to be told it may never happen again but always have had headaches especialy when I laugh a lot and I do like to laugh.

      I have an appointment for the end of may to see the neurologist and I'm sure of the outcome but was worried about surgery or to try and live with the pain but it's to much to try and live with day to day the May date couldn't come soon enough.

      Do you know of anyone who has speach problems time to time sluring some words and can't remember words whilst in a conversation as this does happen to mesome times?

      Thankyou for your reply much appreciated Paul.

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    • Posted

      Hey Paul, I did reply earlier to you, but I added a website link, so my response has been sent to the moderators!! You should have it soon.....

      in response to what you have responded above, I have had a lot of speech difficulties & raised it with the forum recently. I had slurring of speech but this has now gone since my op. My NS said it is when I had pressure against my brain stem due to my Chiari & CSF fluid.

      I have problems remembering words, this has not improved since the op and I am seeing a new specialist for this next month! I have jaw ache too! I cannot find the correct word I want to use , eg, television, I have to say in a frustrated voice (I want people to know what I mean, but they cannot read my mind lol) so I say the thing you watch, it is in the sitting room.....etc, 

      This only came about after my "funny turns" I thought I had a mini stroke?

      (This was pre op)

      good luck, hope you get my previous long winded reply! 🙂

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  • Posted

    Hi Paul, I agree with Helen, I too am surprised that you have not had decompression surgery already!

    As for your drop attacks, these are a symptom for only some patients with Chiari, however it is not something I have experienced myself.

    Which hospital are you with & what do your neurologists & neurosurgeon suggest?

    I was prescribed amitriptaline too, it made me worse, but I am not a doctor, so, that is all I can say! No meds helped my symptoms in the end! 

    As for your attack, when you were hit, I am so sorry to hear this. It is very serious & I trust you were well looked after & thoroughly checked over in hospital following this? Police involvement & legal case ongoing I would hope & assume? Yes, though, this would massively contribute to worsening any neurological condition without a doubt, let alone the trauma & stress it will have put you under!

    You say critical illness case, is this insurance purposes? My experience is that I cannot even get health & critical injury insurance because I have Chiari & they won't even consider cover for me as I had brain & spinal surgery in the last 12 months!, but, if you had it in place before you were diagnosed, then absolutely pursue your claim, that is what it is there for, especially as you are self employed and cannot work or drive. 

    As far as surgery goes, ensure you are well informed & under the care of a NS that specialises in Chiari. The Ann Conroy Trust website is well worth a read, as is conquerchiari.org.

    I had my decompression surgery last May. I was diagnosed with Chiari 1 about 8 years ago. My symptoms progressed, worsened, lasted longer during episodes and I ended up with less symptom free periods in between. 

    Opting for surgery was the bravest & best thing I could have done. Even though there is no cure for Chiari, there is a chance to halt the progression of symptoms. I had to go for it as I am a mum of 3 children & couldn't bare my symptoms any more or the chance of a syrinx & then damage that could be irreversible.......

    You are welcome to pm me, if I can help in any other way, good luck!



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    • Posted

      Hi Hayleybell

      In reply to the insurance I've got a critical illness policy in place and was told I'm not covered which I was astonished at, but reading into the small print again it's a fine line weather you are or not covered so I might try and find somebody who has greater knowledge in this field after all I've paid a lot of money into this which is meant for these times so frustrating but I will keep onto them.

      Also today has been fruitful for me as I took a visit to my GP yesterday who is very good and doesn't dismiss everything , must of made a few calls to my neurologist as they replied the CT scan I had for the bleed on the brain was reassuring and to attend a meeting with the neurologist who would then refer me to the neurosurgeon . So hopefully an OP is on the cards not sure how soon though, to be honest I did do some washing-up and house work yesterday and was in absolute aganey all day and this morning so sooner rather than later.

      Its reassuring an OP is the way forward at least to lesson the pain if anything . If I'm honest I do some extreme sports which is frightening and I don't think anything of it but the OP frightens the life out of me so I admire your courage in doing it hats off to you .

      When I was attacked and admitted to hospital they didn't do any scans on me at all but never gave it any thought that it could bring on symptoms and collapse again until you mentioned it the other day as I said it got dismissed when I asked.

      The case was closed by the police due to lack of evidence .

      The hospital I'm referred to is Coventry Walsgrave and also go to a satellite Hospital called the George Eliot in Nuneaton both have been great as things are moving quite quickly now just a few more tests to go and will wait and see fingers crossed.

      My doctor has upped the Amitriptyline to 75 will see what that does not convinced as tacking co-codamol as well .

      My dizziness has got worse but goes off now and then but I seem to have some tremors as well which has never been a problem have you experienced this at all?

      I must say again it's so good to talk to people who have experienced all of this as it helps loads in answering the big question's that roll round in my head .

      I felt like people where looking at me and thinking what the hell is wrong with him he looks perfectly OK to me and start questioning myself .

      I'm not one for crying wolf i just get on with what is thrown at me so some relief in the knowledge others have suffered like me.

      A Big thankyou for your support I will keep you informed as to what happens next take care Paul.

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