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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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  • shanice83731
    shanice83731 Guest

    Posted

    Hi

    I have Chairi malformation, syringomyelia, syringobulbia and scoliosis. I was diagnosed at 6 and had my first decompression at the age of 7, I have had 13 operations on my spine but as you know its never ending.

    I'm now 20 years of age with 2 young kids, I love being a mum but its so hard to do day to day things without being in pain.

    I am so glad I found this forum I had no idea that there is a few people in the UK that know how I feel, as you know family try but don't understand they just think you have pain every now and agaim not everyday.

    • kimberlee_90115
      kimberlee_90115 shanice83731

      Posted

      Hi,

      Like you, I was feeling completely alone, nobody understood even though my family tries so hard to.

      I went onto social media in the end and actually found a few people within my local area all with Chiari malformation and related disorders. They have been a complete lifeline, all swapping info and understanding and even lots of giggles!!

      I hope you're doing ok. 

      I'm thinking of you.

      Take care 

      Kimberlee xx

  • Tramsteer
    Tramsteer Guest

    Posted

    I can relate to a lot of what you say and you should get as much support as possible. Have you come across the Anne Conroy Trust?

    A national body based in Birmingham (Queen Elizabeth Hospital) and home to the best Specialist in our condition, Mr Graham Flint.

    • kimberlee_90115
      kimberlee_90115 Tramsteer

      Posted

      I actually hadn't heard of Mr Flint or that trust, but I will definitely check it out tomorrow morning. 

      Thank you xxx

      I haven't been on here for a while as I've had yet another infection (number 8 since surgery in January!) so been stuck in bed unable to hold my phone or iPad 😰 hopefully no more infections!! 

      It's actually so nice knowing that there are others out there that totally understand what it's like. Take care xxx

    • b2wc97455
      b2wc97455 Tramsteer

      Posted

      Dear Tramsteer,

      I am new in this forum, I went to my Neuro Surgeon yesterday as I was diagnosed due to my blacked out last year, after several lumber puntured treatment and GON (blocked on the occipital) did not help my neurologist referred to the neuro surgeon called Mr Graham Flint and I just googled him name and itd directed me to your note, would you mind telling me a little bit about him , how do I contact him..has he done lots of CM surgery...how is his success rate..have you done surgery with him..how do you feel now..reading from all this sites and what my neuro surgeon told me yesterday..it is really confused me even more...whether I should put up with the pain...or should I under go the surgery..it seems they are no better wheter having surgery or not..its seems that your life is not better ..so what is the difference then..????

    • b2wc97455
      b2wc97455 kimberlee_90115

      Posted

      Dear Kimberly,

       I can't help but noticing what you have writen here, I hope you are still active, I am glad we have a forum here, I went to my neuro surgeon yesterday, he was very honest about the risk after surgery..is just what you described here...is just make me scare even more..whether to have or not to have surgery...so..are you saying that even after the surgery you still facing the pain and have no Quality of Life. (I might be misunderstand what I read here) so if you can turn the clock...wouldn't you the OP? how are you coping now on daily basic..I am feeling so bad for you..for that guy to shout and swear at you at the car park..have you not got the disable badge to display?

    • yeltzer
      yeltzer b2wc97455

      Posted

      Graham Flint is the top man for CM surgery in the country, and he is a very nice person. His success rate is outstanding. Good luck to you.
    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Hi Laura,

      Nice to hear from you again, but i am so worrry though..after listening to my Neuro surgeon yesterday..it seems that the impact after surgery could be worse..and reading from Kimberly and some of the rest..it seems they are getting worse than better after surgery...huuuu..huuu..what do I do???, I really scare....I do not want to be disable...though.. what about you, because you are much much better off now than before aren't you?...where do you live?

    • yeltzer
      yeltzer b2wc97455

      Posted

      See Graham Flint he is very understanding, not your bolshie type surgeon, and will answer any questions, actually he encourages and welcomes them. I had him for my decompression and although I still get some symptoms even now they are nowhere near as bad as before my op. I don't pass out any more for one. The op releaves the symptoms however you can still get some symptoms even after, not as bad though. The jury is out on wether a hernia can reoccur and occasionall scar tissue can give you some problems but never heard it reported after Mr. Flints ops. See him he is a nice man. Good luck
    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Thanks hun, I will I just send a letter to my GP to ask to be refered to him as NHS patient if it is too long than I might have to get private 1-2-1 appointment than go as NHS patient..I will let you know how I am getting on with him, I also would like him to give a seminar/talk in my area as lots of health care professionals in my area (Dorset) have no clue about this condition. but saying that they are very honest about it.
  • yeltzer
    yeltzer Guest

    Posted

    Tramsteer I agree Mr Flint is brilliant, he did my decompression. Found a YouTube video explaining the Malformation from the Chiari Malformation Awareness, how symptoms, a big long list, come and go sporadically and nobody seeems to understand unless they have the problem. After watching this I realised I experienced some of the sympotoms as long as 18 years before my decompression. Gave hope. 
    • yeltzer
      yeltzer

      Posted

      Sorry for all the typos.
    • kimberlee_90115
      kimberlee_90115 yeltzer

      Posted

      You're so right!! I used to fall over and pass out all the time for no apparent reason, one of my bosses actually accused me of doing it for attention!!!

      This has happened all through my teens and only now at the age of 42 did I get diagnosed, it's horrendous as it's so unknown here! 

      I had my surgery with Mr Bukhari and he was amazing, not so great with his bed side manner but great steady hands!! Ha ha 

      Take care xx

  • tommy5150
    tommy5150 Guest

    Posted

    You are exactly right. I had the decompression surgery in October of 2013. I still don't feel right.

    My neck hurts all of the time, I have very little drive.

    I am glad I had the surgery because most of the bad headaches are gone.

    I have been diagnosed with occipital neuralgia. I get 4 nerve block shots in my head every 3 months.

    They don't work.

    My neck is totally messed up and I can't find any relief.

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