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My experience of Chiari

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Eventually in 2005 I was diagnosed with Chiari (I was 37) and under went surgery. I was also told that I had syringomyelia. My symptoms where always diagnosed as Depression and though I kept telling my GP I felt fine, I was ignored. I think this happens to many people with this condition. Also since having surgery, people think I am now healed and over it, yeah right. My body is still damaged and as my neurosurgeon said it was not a cure it was prevention surgery.

I burn myself in the bath as I am unable to tell that the water is hot, or I find that it is not to the tempature I can feel, so it is extremely hot, but not too me. When giving birth to my children, I could not feel the reaction to push, I felt the contractions but the body couldnt react to pushing and I had to be told when to push - not enjoyable. I described to many people that I had monkey arms - I knew I had arms as I could see them, but I felt like I dragged them along with me.

I've lost most of my teeth, its like the body is too weak to maintain them, even brushing regularly etc, I have very weak teeth, speech comes and goes, you know what you want to say but often it comes out all wrong or you stumble over your words, not so much of a stutter you just slow down in talking.

Emotionally as well, I seem to be up and down and describe it like a roller coaster. I get very frustrated as I want to read etc but find concentration hard, am effected by light sometimes too bright other times too dark.

Due to a spinal problem as well I find sitting difficult as I tend to lean to the left in most chairs.

But I think most people with this condition suffer from the fact that most of our symptoms are hidden, we look normal, we dont look like we have problems, pain or difficulties and are often ignored or dismissed.

5 likes, 39 replies

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  • kimberlee_90115
    kimberlee_90115 Guest

    Posted

    It's nice to know that there are other people out there with this horrendous condition. 

    I had previously had 6 hip surgeries and when I kept going back and forth to the pain clinic and the GP I was told that the pain in my back and neck was caused by me not standing correctly as my left leg was weaker after the hip surgeries!!

    I'm a fiercely independent single mum and I battle through things, so I just kept going, and going, I was working part time and studying full time for a degree, whilst raising two children and running a household! Until eventually I collapsed and was then taken for an MRI scan. I was then diagnosed with Chiari malformation and Syringomyelia. The syrinx unfortunately go from the top of my cervical spine all the way down through my thoracic spine. 

    I had decompression surgery in January 2014 but am now totally reliant on other people for absolutely everything!! I don't feel like me anymore, it's horrid! One of the most upsetting parts, is that after 4 years of hard slog and studying for my degree, I was only 6 months away from graduating when I was diagnosed, and I had to leave university, I was totally devastated!

    I'm now awaiting further surgery as I'm getting more symptoms. I didn't realise the implications of this condition, it is a life long battle now and it's so difficult to explain as to most people I look absolutely fine (apart from the wheelchair). 

    It's nice to know that I'm not on my own, the only other information and forums I've found have all been American, which are great and extremely informative, but it's nice to find a forum a bit closer to home.

    • kimberlee_90115
      kimberlee_90115 angela_mum_of_child_with_chiari

      Posted

      Hi,

      I had to be at the hospital for 8am to go through all the pre-op stuff, but the actual surgery took around 4 hours. My family were going crazy as it was almost 5pm when I came out of recovery, but there wasn't anything wrong at all, I just took a long time to wake up properly! But I was sitting up in bed eating toast that evening and up on my feet the next morning. I went home on day 3, it was amazing!! I was stunned that I could have decompression surgery on Monday and be home on Wednesday!! xxx

    • angela_mum_of_child_with_chiari
      angela_mum_of_child_with_chiari kimberlee_90115

      Posted

      Thank you for the reply Kimberlee😃 I feel so helpless at the moment and I'm so anxious waiting for his date to come...all this is the unknown and that what I find hard so thank you for letting me know the ins n outs x
    • kimberlee_90115
      kimberlee_90115 angela_mum_of_child_with_chiari

      Posted

      Hi, don't be daft, you can ask as many questions as you want! It's a scary time, I think I found it easier as it was happening to me, but if it had been happening to one of my children, I'd have been terrified!! 

      The pain was pretty intense after, but it's pain from the surgery only, the massive headaches I had every day and the pain in my neck that id suffered for so very long had gone completely, already!! I had more movement in my head and neck the day after surgery than I'd had in almost 2 years. 

      They do give you plenty of medication so the pain is kept to minimum. 

      Hope this helps xxxxx

    • angela_mum_of_child_with_chiari
      angela_mum_of_child_with_chiari kimberlee_90115

      Posted

      I am terrified and thank you it helps talking to someone who knows from experience what it is like,it affects my son in so many ways example he can't hold pen falls over all the time, he can't do buttons or hold knife and fork his hands are too weak. He gets headaches but not everyday...he finds baths hot as he can't feel temp properly sad I really do hope his surgery works so he can do things any other 10 year old wants to , it kills me seeing him not be able to do these things his memory is shocking too x
    • kimberlee_90115
      kimberlee_90115 angela_mum_of_child_with_chiari

      Posted

      Hi,

      It's absolutely fine, you can ask me anything. It's a scary time. I too have trouble with a knife & fork. I also used to fall over all the time, although I haven't fallen at all since the surgery.  I was almost at the end of 4 years hard studying for a degree but I had to stop when I was diagnosed, my memory is also terrible now and I worry I'll never be able to graduate?!?  But I think and hope this will get better?! I'm keeping everything crossed!! 

      I'm thinking of you, take care and don't be worried to ask questions.

    • angela_mum_of_child_with_chiari
      angela_mum_of_child_with_chiari kimberlee_90115

      Posted

      Awww I'm sorry to hear about your degree😔 that's why I'm getting his surgery done now so hopefully then he be able to achieve his grades at secondary , he starts year 6 in sept so that will give him year to get better... But I've heard the childrens hospital in sheffield specialise in neuro surgery so believe I'm in good hands x
    • yeltzer
      yeltzer kimberlee_90115

      Posted

      Just come across this discussion although I have been in contact with Angela. Its reassuring to find other people have had problems, I mean that in a nice way as after my doctor telling me I'd had the decompression and therefore I was"cured" "What do you expect me to do about your symptoms?" This after a year of fobbing me off and then almost another year with a useless neurosurgeon, saw him in the January MRI scan a week later then he cancelled appointment after appointment till November and refered me to another surgeon who operated within two weeks. 9 hours op apparently it was in my spinal column(?). 3 months concused. I don't think my GPs surgery had come across this condition before, hence ignorence

      2

    • kimberlee_90115
      kimberlee_90115 yeltzer

      Posted

      Hi, 

      I had the same problem, I kept going back to the consultant, who kept fobbing me off. My parents eventually found an amazing neurosurgeon and thankfully paid for me to see him privately, he then transferred me to his NHS list and I was operated on in January this year. 

      Unfortunately, like you also, it's not a well known condition and the pain and fatigue is so exhausting, I do find it hard to remain positive when doing even the smallest little thing leaves me in agony! 

      I hope you are ok and have finally found a decent neurosurgeon?! 

      Take care 

      Kimberlee xxx

  • angela_mum_of_child_with_chiari
    angela_mum_of_child_with_chiari Guest

    Posted

    Hi my son is due to have surgery for chiari in August he is 10 years old I was wondering if you could tell me what to expect when he comes out of theater, and also how long your in there for? 
  • kimberlee_90115
    kimberlee_90115 Guest

    Posted

    Hi,

    Wow!! It's so lovely to hear your story, everything you've written is everything I've been through and feeling. So many people say how well I look and now I can get back to normal now my hair has grown back!!! If only they knew??!? Every single tiny thing I do leaves me in pain, I have pins & needles/numbness in both arms and hands, terrible neck pain and horrendous headaches. I also find it difficult to sit in a chair, just the smallest of things that I used to take for granted (like having a quick shower or washing my hair) is now an exhausting task and leaves me in horrendous pain. 

    I've unfortunately been approached in a public car park, when I parked my car in a disabled parking bay, by a 'gentleman' who shouted at me and his words were "you don't look f*****g disabled to me!!"

    It was heartbreaking, I just got back in the car and drove home in floods of tears! I'm not sure what "disabled" is supposed to look like, but I wish with all my heart that I didn't have this exhausting, painful condition. I had decompression surgery in January this year and I'm trying very hard to come to terms with the fact that I may never be any 'better' but like this for the rest of my life?!? 

    It's so nice to know that I'm not on my own. Before I was diagnosed, I had never heard of Chiari Malformation & Syringomyelia?!?! 

    • mgtmay
      mgtmay kimberlee_90115

      Posted

      Hi kimberlee! I have just joined  this site on recommendation from my R.A. Dr! So sorry to hear how you have been suffering! Can I just tell you that I had decompression surgery 22 yrs ago I knew nothing about syringomyelia? until I burnt my back through leaning on a hot radiator, I had a wonderful dr who is now head of nuro surgery in a Greek hospital now,  I have some other back problems and the ra for the last couple of years, but that decompression op stopped  me from ending up with more problems, I am sure, I do hope you have come through it,  it took me a year to feel well after it and I had three children at that time, so if you need help, or it's offered take it.
    • kimberlee_90115
      kimberlee_90115 mgtmay

      Posted

      Hi, 

      Thank you so much. I'm almost a year from surgery now, and although the pain, numbness & pins & needles are the same, I think I'm learning how to deal with a lot better. It's so hard for me to ask for help, as I've always been so independent, but I'm getting better at that too! 

      One of the worse parts of this awful thing was feeling completely isolated and totally alone, nobody understood, even medical professions too!!! So thank you again, it's nice to know I'm not alone.

      Take care

      Kimberlee xx

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