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I need to talk to someone concerning Chiari..

Posted , 15 users are following.

christinejava
christinejava

I've just been diagnosed after having standing MRI for a completely different reason for a personal injury lawsuit....I would like to talk to anyone diagnosed in later life...I'm 48...,freaking out here...

1 like, 28 replies

28 Replies

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  • jvjng898
    jvjng898 christinejava

    Posted

    Hi - 51 was diagnosed 3 months ago - freaking out as well.

    had my first neuro surgeon appointment last week 

     

    • b2wc97455
      b2wc97455 jvjng898

      Posted

      Hi there, what is your NS advising you, do you have to have op?, i am sure there are lots our membes will tell you their expriences... anyway, I am still waiting for my operation...how do you feel, any medication they give you?... what is your symptom?.. the positive thing is you know what it is at least now you know what to look forward to..what you are going to do with the management treatment of it..wether you decide to have an op or to just get tretment until you can't put up any longer? where do you live? are you working....I have to rtesign to my job 18 month ago as i couldn't even walk
    • kenya13914
      kenya13914 jvjng898

      Posted

      Hi I'm 43 and I have seen my Nero surgeon twice. I m taking med. for vertigo and migraines. I'm going to see a eye nose and throat doctor in a week.

  • Dizzyjct
    Dizzyjct christinejava

    Posted

    53 and totally freaked out myself . Had MRI for sudden deafness in one ear , and up pops Chiari . I didnt get results until I was referred from ENT to a Neurosurgeon . Saw him in Feb,I have my pre op assessement next Monday , he is expecting to operate in the next month . I am in Leeds and will have my op in LGI . Not sure how informed they are, a lot of people are praising The Walton in Liverpool . Chiari 1 and Syrinx , whoever heard of such a thing . Have you had all the symptoms , I'm guessing you've had an injury that has set it off, as I did, after a fall on the ice . I don't know if this is allowed on site, but my e mail is [email removed] if you'd like to chat . Cheers Jill 

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • b2wc97455
      b2wc97455 Dizzyjct

      Posted

      You are so lucky that they are able to fit you in a molnth time, are they specialist in Chiari?, have a look at the list of Ann Conroy trust..or call the nurse there , they will be able to advise you if they are specialist in it and have a succss rate in operating their patient..but if you can get to WALTON that would be good, I am sure you will not be long to be on their waiting list..beCAUSE THERE ARE LOTS OF chiari specialists there and Leeds is not too far away..let us know how you are getting on..what medication does you gp prescribed you?
    • Dizzyjct
      Dizzyjct b2wc97455

      Posted

      Hi, I think my syrinx is considered quite large, and I have already lost all hearing in one ear, which is why the operation will be so soon. I understand that the surgeon can't give me anything back I have already lost but can stop me getting worse . I have had all the symptoms, especially headaches for a couple of year , I am getting a claw hand too !!! It is so new to me, Feb 17th was the day I got my results and until then had never heard of Chiari . I don't take any medication, other than the "take 2 paracetomol" that I was told every time I went to the GP's with another sympton . 
    • b2wc97455
      b2wc97455 Dizzyjct

      Posted

      wow, you are so excellent in bearing your pain, mine just unberable, it is impossible for me just to rely on paracetemol..the health care professional team given everythings (you name it: from paracetemol to opium..to steroid.to morphine..) nothing worked..in the end they given me anti seizure drug called topiramex..which is a very high dosage 200...but I am only on 50  now..as the time went by..the prpolonged use of drugs is no good..and a friend of mine bought me magnesium extract, ginkgo extract..grape seed extract and magneisum oil so I started taking them each day..I did not believe at first that these were going to help me..but after 90 days of using them..they really statred kicking and it does helping me..I started to walk.. and I can bend down..and I stopped taking any medication and take 50 mg of topiramete..my goal is taking off any drugs prescribed even my Neurologist said to me...if I can be free of drug and change my life style that will be good for me, he also advise me to drink plenty of waters (at least 2 littres a day) walk 10 - 20 minutes dialy if I can..so that is what I am doing..so.. the most important thing is..do not settle your claim yet..it is car accident you involved with..? just be patience..it worth while
    • hannah70156
      hannah70156 Dizzyjct

      Posted

      Hello there  sorry about your diagnois , i am in leeds to and suffer from chairi , could i ask which Neurosurgeon who have seen at lgi as i have been seeing mr Tiagi i think thats how you spell it lol . what syptoms do you have ?
    • Dizzyjct
      Dizzyjct hannah70156

      Posted

      I saw Chris Derham , I have only seen him the once, and that was to get my results . His secretary "forgot" to put me down as agreeing to the op ! So I am behind schedule . I have my follow up appt for May . I have headaches, tinnitus(deaf now in one ear) , leg pain/numbness, same with arms . I also have developed a strange twist in my right hand, which was suspected arthritis, but I've since read that it could be because of the syrinx . I also am forgetting things, which has just made me laugh because I've been sat here 5 minutes trying to think of the word "forgetting" . I'm very worried about not being able to drive, I've notified DVLA but haven't heard anything yet . Have any of you lost your licence ? Still sinking in for me, the results were a massive shock as I have never heard of it before .
    • sarah18145
      sarah18145 Dizzyjct

      Posted

      Hello,

      I have just found out last week that I have Chiari after been taken into hospital with passing out, dizziness and numbness on the left hand side of my face, ear and neck. I was taken into York Hospital who decided to do a ct scan to check I hadn't had a stroke, it came back I hadn't but the junior doctor said I had Chiari but they weren't even going to tell me about it as its very normal and nothing to worry about and put my symptoms down to a migraine! It's only once I got home and researched it that I realised what he said was a load of rubbish and the symptoms I've been having for the last month could indeed be from Chiari. I just wanted to let you know that I have found a neurosurgeon at Sheffield Hallamshire called Mr Thomas Carroll who specialises in Chiari so that is a little closer to Leeds than Liverpool so it may be worth getting in touch.

      I am yet to get any answers and still have no idea at what stage mine is or what I should or shouldn't be doing! I hope you get some help soon and please keep us updated on your progress. Good luck

    • karen05086
      karen05086 Dizzyjct

      Posted

      Hi. I fell on ice too. I've searched the internet for 3 years as no help from NHS, so finally paid a lot for upright MRI scan in London. But having to diagnose myself from the radiologist report as they only confirm what the damage is, they dont confirm any long term conditions.
    • karen05086
      karen05086 b2wc97455

      Posted

      Hi thank you for your story, I had a fall on black ice, and tried so hard to get it through to my Doctor that I wasn't well. I havent even been diagnosed yet but I know whats coming. I wonder how many people have lost their job and their home because of this illness. I'm concerned there could be people out on the street with this condition.
  • b2wc97455
    b2wc97455 christinejava

    Posted

    hI there, did you have accident, please do not settle until you fully recovering, if the caused of your chiari is due to your accident, I was hit by a lori 1 years ago from then on I suffered from back, neck, body pain, and from year to year my condition getting worse and worse then health care professional diagnosed me with fibromyalgia untill 18 months ago when I started getting horrendous head qand pain ached till I could not walk nor swallowed as well black out..when I got MRI/scan they found out I have got Chiari 1- but my law suit being settled 7 years ago..so..its best to leave it untill you fully recover..with chiari..lots of them said that you never fully recovering, I do not know..I am the positive one..I am waiting to be operated by Mr Flint..as Walton - Liverpool from me is 51/2 hours as Birmingham is onlyh 31/2 hours..., , lots of people who are recovering from chiari do not participate in this forum as they are busy with their life..I am not sure..as I do not have the experience yet..I am sure lots our members here will give you inside information. 
  • Linleel
    Linleel christinejava

    Posted

    I'm 57. I had an MRI in October for headaches, dizziness and blurred vision, loss of balance, disorientation. They found a Chiari 1 Malformation. Then I had an MRI of cervical spine, MRI of thoracic spine, Cat scan of brain to check arteries, Tilt Table test for blood pressure, Lumbar puncture to rule out multiple sclerosis, vestibular tests (ears/balance) and eye tests.  None of them showed anything significant. So I still don't know what is wrong as the doctors don't think my symptoms are indicative of Chiari.   Next is an MRI Cine, which measures cerebrospinal fluid (CSF) flow from the brain to the spinal cord and back. If Chiari is significant, there is usually blockage to the CSF. 

    Last time I talked to my neurologist, she prescribed Pamelor for neuralgia, steroids for inflammation and see her back in 2 months. 

    So my experience has not been pleasant. The doctors don't think symptoms are Chiari, the do every test in the book to rule out other diseases and they don't want to do surgery anytime soon, which is usually the way to fix Chiari. 

    What are they planning for you??  

    • aimzlou
      aimzlou Linleel

      Posted

      Hi linleel

      Your symptoms sound very similar to my own, can I ask you how long it took you to get the results back from your MRI?

      Kind regards

      Aimee

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