Could this be Chiari malformation (long history and scans follow)


I’m trying to find out the cause of my symptoms, but and opinion for you experienced souls as to whether I should seek a specialist opinion.
thought it might be useful to put details of my history what is going on with me:

1995 : age 13. started having balance problems, falling of bike etc. this progressively went worse over 4 weeks to the point where i was admitted to hospital as i could barely stand. I then experienced an unbelievable headache for a few days, if i moved my head it felt like it would explode from the top of my neck to my eyeballs, to the point where if i moved my eyes it hurt so much i vomitted. I had an MRi scan and 2 lumbar punctures to rule out meningitis, which were all clear. three days later it subsided and i walked out with no diagnosis, but severe headaches for a few months.

2006 : age 24. had a 4 days virus, tempteraure etc, normal sort of cold thingy, but was left with horrendous headaches. had an MRI scan again, and found nothing scary. was treated for chronic daily migraine for 15 months, various drugs (dosulepin, amytripiline, topiramate, sertraline), none seemed to work. saw 3 neuro’s and a pain consultant in the end who decided that the tighness in my neck was probably causing the migraines, which were causing the tightness in my neck, which were causing the migraines (you get the picture). So to try to break the cycle he did an occipital nerve and facets block (?), within a month the headaches had subsided and i was back to normal and back to work.

october 2011: age 29. had a very mild bought of chickenpox caught from my lovely daughter (had chickenpox as a child, so this time only had 23 spots, but felt rotten for 5 days). that settled down and left me feeling very dizzy, and with poor coordination. Then my speech began to slur and i started to struggle finding words or keeping track of what i was saying. My GP but my on acyclovir and sent me to hospital as he was worried about enchephilitis on the back of chickenpox. In hospital i got worse, so the point where i couldnt walk, the room was spinning so severely it was unreal. If i sat up for any length of time my head hurt terribly. some days if i sat up for more than 20 minutes i had to lie down, the worse my head hurt, the worse the dizzyness, the worse the speach. I also had terrible coordination, and shakes and weakness in my right arm (so i was struggling to feed myself). my short term memory was terrible, i didnt know what time of day it was, or the day, or if i had just eaten or was about to etc. I had a ct, mri and mrv scans. they announced it was a cerebral venous sinus thrombosis (cvst) and i was kind of suffering a mild stroke. I was then put on introvenous acyclovir, heparin infusion and pain killers. I had a lumbar puncture showing no white cells 78 red cells and an opening pressure of 25cm. over the course of 2 weeks my headache slightly improved, but the other symptoms remained. they got me on warfarin and once it was at a sensible level i was discharged. over the next couple of months things slowly started to settle down. my shakes going first, then gradually the balance and coordination, and speach and memory etc. Though if i exerted myself all the symptoms were worsened, same if i became stressed or wound up. in january i had an appointment with Dr Simon Ellis who prescribed acetazolomide and amitryptiline. by march (5 months on) I was pretty much just struggling with the intense headaches, and had a follow up MRi (at this point i was told it wasnt a cvst in the first place and i could come straight off warfarin). i was told the acetazolomide didnt seem to be having an effect, so stopped taking them. gradually over the weeks that followed the headaches became less constant, and i returned back to work in May, and by July I was completely back to normal, no symptoms whatsoever.

October 2012 : age 30. Having lost nearly 4 stone in weight and no longer being classed as “overweight” for the first time in my life (I’m 6’5", and was 19 stone, now just over 15), all was good. Then i caught a bit of a nausea and diarea bug from my lovely wife, after 3 days it settled down, but i was feeling dizzy. that night my speach began to slur and the mental fog returned. In a panic we went to A&E, where i had ecg and blood tests etc. they said it was probably just a migraine and to go home and get over it. i went to work on the monday, wasnt myself, still dizzy and not mentally sharp at all, with a bit of slur and stutter. that night my headache kicked off and i knew it was exactly the same as a year ago. I got my GP to refer me privately to Dr Ellis, as he had discharged me over the summer. I saw him this saturday, and he booked me straight into the neuro ward at north staffs. I had an MRI which gave a questionable cvst again, then an unremarkable lumbar puncture (opening pressure of 19cm). they put me on heparin and did a CTV yesterday, this showed what they thought was a cvst was infact granulation (?), and they stopped the heparin. then the neuro there (not Dr ellis, who despite being my consultant whilst in there did not see me once in the 4 days i was there) discharged me saying it was probably migraine with vertigo.

so i sit here on my sofa, feeling ok so far today (as is often the case as i am generally better in the mornings), but my neck is startign to feel stiff, so i’ve probably got half an hour before the headache comes, my balance starts to worsen and my speech may or may not get worse.

i’ve been given 80mg slow release propranalol (which is fun as my highest bp in hospital was 116/92, lowest of 84/56). naproxen for the headache, and betahistine for the vertigo. alls i can i do is see if they have any effect of the coming weeks whilst continuing my search for answers.

sorry for the essay.

thanks again,


some scans

469-sag1.bmp (812 KB) 470-top1.bmp (492 KB) 471-back1.bmp (506 KB)

So is it worth tracking down a chiari specialist in the uk for their opinion do you think?

the only other thing that could relate to chiari is im hypermobile, seen some things saying there can be a link.


can the symptoms wax and wane during the days, between days/weeks? ive had huge spells of months /years of a totally normal life, then a common cold or bug seems to set it off for months.does this sound reasonable?

im going to pursue a referal to a chiari specialist today.



just got a copy of the letter from the neurologist (who admitted me) to my GP.

hes also noted on my examination that my eye movements are painful, especially upwards, and he cannot find any venous pulsations in my eyes (he made a point of mentioning this last year also).

i keep getting blurry in my right eye like some goo is blocking my view, so keepimg rubbing my eye to clear it to no effect.

the only other thing is a tender left forearm, feels like ive got a bruise on the inside of my arm from elbow to my wrist, tender to touch, but nothing can be seen, been like this for 2 weeks.


well ive booked in to see a chiari specialist a week on saturday, so hopefully have more answers then.