Newly diagnosed Type 2 Arnold Chiari malfunction

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Hi everyone 

Nice to actually find something online with peoples experiences! Cant seem to find much at all. Right ill give you a brief(ish) run down on it all. Just looking for similar experiences really and the outcomes for everyone i guess.

Im a 30 year old otherwise healthy female with 4 young children 9,8,6 and 1.

So December 15 i started getting various symptoms, had eyes checked which were perfectly healthy and suggested i see a neurologist. Spoke to doc and made an appointment with neuro and ordered CAT scan. Had CAT scan then saw neuro. The results werent back by the time i saw him, told him all the symptoms and he came to the conclusion i had suffered a bit of a mental breakdown and it was all stress related!! Last week I had a call from docs the results were back and they wanted to see me the next day. Cat scan results showed ventricular sysytem was symmetrical but dilated suggesting Hydrocephalus and also the cerebellar tonsil. They have arranged to go back to said neuo and an MRI ordered to see in more detail the nerves etc. 

A run down on symptoms (the list goes on!!) -

Headaches - like no other headache ever - pretty much constant pain at times flares to severe pain. Can be really bad for a long time or just a short while. 

Pressure - feels like a balloon you have blown up that much its about to go pop. Like my ears are going to literally pop out of my head and its going to explode. This comes most days and can last for a while

Neck pain - this only started last week. Like a bad ache in my neck and shoulders sometimes in my back. Constant achey pain

Dizzyness - started when i stood up or bent down but now its pretty constant. Just appears for no apparant reason. Can be long periods of dizzyness or lasting a few seconds.

'Drunk Feeling' - we all know that feeling when the rooms spinning! Except ive had no alchohol!! My head feels like its jsut spinning and whoozy - can last for a few hours most days

Ears - Like a high pitched zzzz in my ears - comes most days sometimes for short periods other times long. Extreme pressure behind my ears alot of time. 

Eyes - had lots of problems with my eyes - blurred vision quite often and flashing lights - every other day. Occasional pain behind the eyes. 

Memory - This is the bit i dont like - i could be mid way through a conversation and boom its gone, i have no idea what so ever of what i was just talking about. Or certain words i just cant say - like there at the tip of my tongue but i just cant say it. I forget the silliest of little things. So frustrating. 

Lack of consentration ... almost every day.

Legs - occassional pain in various parts, liek the sciatic pain localised to just one part eg my one knee, my ankle. Feeling quite weak aswell as of the last week or two

Swallowing - have periods where it feels as though there is literally something stuck in my throat and i cant clear it - lasts a few days then eases of for a while

Black outs - ive had a fair few of these - only last a short time

Tingling sensation - this is a new one that started friday. My left thumb felt quite numb and tingly. On sunday it moved to my left arm and when i tried to stand up and pushed down on my arms it was like something went pop in the lower half of my arm and since then (yesterday and today) i havent got much use in my arm. Very perculiar sensation and pain in it. Cant really grip or use it well - trying to push the pushchair on the school run up the hill was an interesting experinece earlier! 

Finally yellowy water literally running out my nose - this only happened today a few times like a tap had been turned on and my nose went a little numb, Only on the one side

Sorry for the long story - but as you can see there are a fair few symptoms. As a young newly single mom its starting to worry me. Im scared for them more so than me - and now with my left arm going as it is with a baby trying to pick him up and do simply tasks that we do everyday is really really hard. Im worried about it happening to my other arm, or legs etc. Ive been in touch with the doc's sectretary today and she is speaking to my neuros secretary in the morning ( he was on holiday last week - typical! ) and i mentioned about my arm and symptoms progressing and they are helping to push it more. Fingers crossed its not to long a wait!! 

Thanks for reading and i look forward to hearing some others experiences 

Rachel

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10 Replies

  • Posted

    Hello Rachel

    Very touching read. Very brave of you to share it my dear.

    I firstly understand that this is a difficult time for you and hope that your surgery helps you in the future and relieves you from chairi symptoms.

    I was diagnosed with chairi type 1 at 17 and was later told I had to have a shunt to relieve hydrocephalus. So I went through to surgeries. Decompression suregrory and had a shunt fitted. The suregory are not garuntees that they fully help you being relieved of chairi however in my case and in the never forgotten words of my late surgeon "I was a very very lucky man"

    I suffered unbearable headache, balance, vision, speech and neck issues to name but a few. And can gratefully say 9 years later I have never had them since. However there are somethings that I will always live with. Losing balance whilst walking turning, slurred speech, blurred and double vision I still get. Also I feel my emotions have been affected I.e I have been depressed 3 or 4 times over the last couple years due to related issues.

    I now lead a normal life. I work in a stock room lifting heavy things which I was once told never to do but I can now and have a degree in psychology and currently on a master's.

    So that is a basic out look of my story.

    I hope this some what helps you during this time. If there is anything else you wish to ask me please let me know.

    Take care and all the best for the future

    Jon

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  • Posted

    Dear Rachel,

    Wellcome to this site, I am sure you will get lots of more experien e people will response to your post and they will give you the information you need, I have C 1, but as the time went by I experiences a like wise .what you have, luckily it will not be long now for me to have operation..just waiting..are you in the UK?..well the good thing is you have been diagnosed so..at least you know what you have got..ust try to listen toyour body..my NS told me to take easy..do not do anything that need straining..lifting..strectching  that effecting your spine..neck., try to do relaxing..breathing exercise..drining plenty of water..if possible try to massage where you feel pain with magnesium oil prior sleping..I take a grapeseed extract vitamin its help me a lot..i never used to be able to bend down..but since i TOOK THAT supplement (have to be natural and organic) it ease it...(after 30 days) omega oil3 also good for the brain..i also stop eating anything that content gluten and fried food..., when is your operationj..but be positive..read on the you tube..or the mayo clinic..they give you lots of information about the symptom..so that you need not to worry... or at least ...you feel that you are not alone...so..I hope that is A BIT HELP... but this site is really good..I am sure you will get more response...BUT BE POSITIVE>>ALWAYS

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    • Posted

      Just to add here you are completely right. I hope people find some kind of relief that a cause has been found for symptoms.

      Please every who sees this try and stay strong and positive. Going through this experience is very difficult but it is the only experience that will hopefully help to relieve chairi.

      Take care and all the best my freinds

      Jon

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  • Posted

    I know it sound frivolovous but there is a good video on you tube by a top American CM expert where he states CM sufferers start telling their GPs their symptons and after a couple of minutes the GP is thinking how can I get this nutter out of my surgery? I've seen a report of someone who lists 49 symptoms so yours is not a long story but typical. Nice that you have a simpathetic medical team. 
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  • Posted

    Hi Rachel, have they booked your surgery yet, have you met any NS in QE HOSPITAL, if you had thqt is wonderful at least you know and you can plan....please us know how you are getting on
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    • Posted

      Hiya

      ​No - I got told yesterday that the neurologist has made an appointment to see him the 29th March and still hasnt booked the MRI - but this is the same man that said i was suffesring with stress! So im looking at changing from this neuro (at a local health centre) to one at the QE as they are the best over there. I hve no confidence in the neuro im under at the moment! Im awaiting a call from his secretary to see if he is pushing on with the MRI if not then i shall be transfering. Symptoms are developing to quickly to be messing about with someone in competant!

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    • Posted

      Yes, do that, and we maybe can meet up..hopefully your surgery could be not far off then me..that would be wwonderful..(lol)
      Report

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