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New to chiari malformation, please give me some good news!

Posted , 4 users are following.

hunter831
hunter831

About 2 years ago i had a surgery for a gall bladder removal and about 5 days later i became dizzy so everyone thought it had something to do with the surgery and that i got some kind of inner ear infection. I went through about every test they could think of and lots of physical therapy for all the vestibular stuff and nothing helped and i passed all thetest they did. So about 8 months ago i got sent to see a neurologist and she quickly pointed out that i had chiari malformation of 7mm and that that could be why i am dizzy. i also have headaces and constant neck pain but the dizzieness is just ruining my life. Well today  finally went and seen a neuroseurgeon ( i been putting it off because i keep trying to just live with it) and he told me that he has done this surgery severl times but none of his patients were severly dizzy 24/7 like i am so he dont know if surgery will help me. What i wanna know from all of you is, is it normal with this condtion to feel like im in a boat on water all the time and like everything is moving or spining? When i lay in my bed it feels like im in a water bed to and it dont matter what i d im always dizzy. The last few months have been the worst yet, i can barely get out of bed or off the couch because it feels like my head is going to spin off. There is nothing else they can figure out that is wrong with me and all i can think is that i am going to be stuck like this forever and im only 30 yrs old. Sometimes i will start to feel a little bit better to where i can go out and do some stuff but then a couple days or maybe weeks later it will hit me real hard again and im back to laying around for a few weeks till it lets up a little bit. it never full ygoes away just gets to where i can handle it sometimes.

0 likes, 15 replies

15 Replies

  • Apple62
    Apple62 hunter831

    Posted

    Hi,

    It sounds like it is Chiari symptoms. It is best to make an appointment with a neurosurgeon. They are the most knowledgeable. Chiari can affect your eyes, ears, balance, back, legs and basically just about everything. It causes nerve damage to your spine. I had surgery in 2014. There are a lot of people that have the surgery and recover well. If u are in UK there are people on this site that can suggest docs. I'm in US and would suggest Mayo Clinic or Emory in Atlanta,ga. If I can answer a question, please let me know. I wish u the best.

  • cokeguy223
    cokeguy223 hunter831

    Posted

    I was diagnosed with Chiari as well I forget how far back my tonsils go, I believe it was 14mm.  I also have the exact same dizziness as you describe.  I am constantly dizzy and find it very hard to concentrate on anything.  If I bend over or go from laying down (or even sitting) to standing up I get dizziness so bad I can't move for a few seconds.

    I just got a cine MRI done but haven't talked to my neurosurgeon about it yet.  It does say CSF flow is reduced though, in the results.  I suggest you get a cine MRI done as well so they can actually see what is going on.

    The first visit to my neurosurgeon he told me he didn't think chiari malformation had anything to do with my headaches, dizziness, or just overall exhaustion.  He suggested lifestyle changes, massage therapy, physical therapy.  I tried everything and nothing helped.  I asked him for a CINE MRI to which he agreed and that's where I am at now.  I am similar age to you.

    • b2wc97455
      b2wc97455 cokeguy223

      Posted

      Oh dear..that is worrying for your NS to say that symptomp have nothing to do with Chiari, you like to run away from him..go to get 2nd opinion..if you are in the Uk try to get to Mr FLint - QE Hospital, but US - Mayo Clinic..geeze..your NS have no clue what Chiari Malformation symptom are..dizziness is the first and all, then enck pain, back pain, nausea, pain all over the body, blur vision, imbalanc, IBS< incotinent..etc..tc..ear ache..

  • b2wc97455
    b2wc97455 hunter831

    Posted

    yeeppp..that was I felt like a year ago, but all of them disappear now, a part of the back pain..I am also drug free, go and get them sort it out..if you are in the uK, get Mr Flint of QE Hospital Biringham or walton liverpool, US then Mayo..you will have your life bqack..dont worry..but make sure you do at the earliest..dont leave it too long...
  • hunter831
    hunter831

    Posted

    Thank for all the great reply everyone!! I'm in the USA and don't have health insurance so I don't got alot of choice of where I go to get my surgery. I am so miserable that I'm ready to let anyone try to fix me, he claims he has performed the surgery successfully plenty of times but never heard of the dizzy Ness and that straight freaked me out. Thank you so much for telling me it made your dizziness go away b2w.

  • hunter831
    hunter831

    Posted

    If you guys were in my boat what woukd you do? Our health insurance is really messed up here in USA and hard to get. I can't hold a job now cause I can't stay on my feet for more than 20 minutes at a time and I tried to get Obama care and they won't let me get that toll next year.

    • b2wc97455
      b2wc97455 hunter831

      Posted

      Well hunter, dont they try to get a better health care services better then Obama Care?, lots of people complaining about Obama Care anyway..its a matter of time..I hope you will get it sort it out, however can the government provide you with benefit (social services)...what are you going to do??, surely they have to help the patient??
    • hunter831
      hunter831 b2wc97455

      Posted

      I am filing an appeal for Obama care so hopefully it will help me get some insurance in the next couple weeks and then I will try to find a better doctor. I been so miserable I haven't done much reading about doctors but I guess I really should because I don't want somone to make me worse.

    • b2wc97455
      b2wc97455 hunter831

      Posted

      Dear Hunter,

      I heard that Obama Care was unsuitable for the poor hence your government try to have a bettercover for all the people..lots of them are complaining about Obama Care..If I were live in your area, I will contact the organisation called Syrinegomyelia or even Mayo Clininc..just ask to talk to the nurse/s mastered in Chiari (like our organisation here called Ann Conroy Trust which will be able to discuss and recommend the suitable for their patient..but do not giving up..keep trying..YOU are incharge for your own health NO ONE ELSE..you know your condition..not even specialist know how you feel..so write it down what bother you the most..which worse day what the cause of capacited your Quality Of Life...let your health care professional here your voice and emphathy with your pain.

      Last but not least..pray and GOODLUCK

    • hunter831
      hunter831 b2wc97455

      Posted

      Thank you very much for your replys! They make me feel a little at ease. I dream of the day i am not dizzy, it will be the best thing that ever happened to me. I will not give up, and ill call around some more and see what i can find out. Thanks for the encouragement!
    • b2wc97455
      b2wc97455 hunter831

      Posted

      Well Hunter..as a start its good you are thinking positively.....that is really helping.I promise..you!!!, in my condition and experience..after the surgery..I was in tears because..I felt as though GOD .has given me a chance to appreciate what was like to be healthy again..hence..I feel..so fortunate that I am one of the successful patient of CM1..for those I like to share it with every one herAse on this website..who are going through that taugh moment that ''THERE IS LIGHT'' AT THE END TO THIS TUNNEL...AND THEY WILL GET THEIR LIFE BACK (only if they listen to the advice given by their Health Care Professional/s)  the fact is..lots of them..unable to wait to go back to their normal life instead of take time and listen to their body.

      I have 3 diplomas whilst I was ill my diploma is have something to do with altrnative theraphy to medicine for people suffering from CM andFibromyalgia..as that treatments have safe my life. So,I amnow setting up my own to be ableto treat others who was/is suffering likewise condition.

      Let us know how are you getting on.

       

  • Apple62
    Apple62 hunter831

    Posted

    Which state are you located in?
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