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Diagnosed with Chiari Malformation Type 1

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jjoshua123444
jjoshua123444

Hi I recently was diagnosed with Chiari Malformation type 1 with tiny syringomyelia. I have compared many other MRI's to mine and thankfully my syringomyelia doesn't seem to be as large as some others can be. Im only 19 years of age and this worries me. When I was a baby I had meningitis very bad and was left in a comma for awhile. I was lucky to recover from that. As I aged I thought I got my big major illness out of the way and was very excited for my future. Throught my high school years I have experienced some headaches through the night to the point where I would wake up. This seems to be a very common symptom. I don;t have these mirgraines everyday like it seems some people can get the which im happy about. Lately I have noticed the edged of my right hand where my pinky is can be tingly. I also read that this can be a symptom. My main concern is my life from here on out going to be hell. Im only 19 years old and was very excited for my future but as of right now I am not. I have been reading all of these stories and it seems that the future is always worse and it frightens me greatly. Im going to see my doctor January 5 about what I have. Does it get better? I know there is a surgery that is used as a treatment and can help people. So I guess my main question is does it get better or will my life slowly turn for the worse, im only 19 years old and want a good life for me. Also has decompression surgery help others with symptoms greatly? Thanks for the time.

0 likes, 24 replies

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  • jjoshua123444
    jjoshua123444

    Posted

    Also to add the Chiari Malformation was found when I had a MRI due to pain in my neck. The pain is not constan. More like a stiff pain when I look side to side.
  • vanessa88442
    vanessa88442 jjoshua123444

    Posted

    Hi Joshua,

    I was diagnosed with Chairi Malformation at the age of 19 also. That was 41 years ago. I am still here. I am not going to tell you it's going to be easy having CM, but you live and you can enjoy life. There will be adjustments along the way but you can do it. There will be good days and there will be hard days. You have to understand everyone experience life with challenges. It's all in the way you look at it. Surround yourself with love ones and people with good spirits. Ones that would encourage you every step in your journey. Be positive and have faith that what man can't do our,Father God will.He has carried me,this far when the medical field gave up on me. I may walk a little slower.have pain everyday,but I'm still here by the Grace of God. With Him I experienced so many miracles: the birth of my son, receiving my bachelors and masters degree, I became a teacher and supported myself, I have traveled, and even went zip linning. Guess what I'm not finished... Keep fighting and know God has already won your battle. Stay strong.

    • jjoshua123444
      jjoshua123444 vanessa88442

      Posted

      Also does it always get worse? I know everyone has different symptoms. But can it be possible someone just has neck pain with heahaches every now and then or does it always get worse? Thanks cheesygrin

    • vanessa88442
      vanessa88442 jjoshua123444

      Posted

      Hey Joshua

      I had to brain surgeries. The first 1 at the age of 19. I couldn't walk for 3 months . The doctors told me I would be in a wheelchair for the rest of my life, but by the grace of God and the support of my family I beat the odds and I walked agsin. There was a content numbness in my lowere extremities but I lead a somewhat normal life until my mid foties. That's when things began to get worst. I don"t want to scare you. I just want you to know how CM affected my life. I started to need assistance to walk (first a cane than a walker). This does not mean this will happen to you. I had my last and final surgery when I was 50 and it didn't go well for me. Again Josh I needed support no man on earth could give me,I gave my life and trust to God and He has seen me through my hardest time in my life. When the doctors can't help me I put my trust in my God. This might never happen to you because my CM was and is the worst 1 you could have. So I'm telling you fight, FIGHT! Keep a good positive attitude.

    • vanessa88442
      vanessa88442 jjoshua123444

      Posted

      Hey Joshua,

      Don't live your life in fear of what might happen. Just live your life to the fullest. CM is not a death sentence. If you have to make a few changes in your life do it and keep moving. Lean not on your own understanding and doctor's understanding about CM, because they haven't a clue. Trust in God. That is how I made it this far.Doctors gave up on me long ago, but I am still herr (:

  • julia79586
    julia79586 jjoshua123444

    Posted

    Hey Josh,

    I have CM and Syringomyelia and I'm 61 years old. I was diagnosed at 39 and had decompression surgery at age 40. I've lived a normal life and certainly intend to carry on doing that. If you believe that an illness will destroy your life then it will. The syrinx in my spine is huge but I still walk the dogs for miles and do the same things that everyone else does on a daily basis. If you have decompression surgery (I can recommend it) then you'll probably feel pretty bad for a little while but then things will improve, it helped me enormously and I'm so glad that I had it done. I know that you are just 19 and must be terrified by this diagnosis. Some people never get worse, many have it but don't know that they have it. Just don't spend your youth worrying about how bad it might get because you have an exciting future in front of you just like I did. Good luck in January and stay positive! 

    • jjoshua123444
      jjoshua123444 julia79586

      Posted

      Thanks I appriciate this Ive been reading a lot of horrible things on the internet with life expectancy and syringomyelia and it just doesn't seem like it can be true. Just truly scared.

  • kekerene
    kekerene jjoshua123444

    Posted

    Hi Joshua. I started having symptoms 6 years ago after I gave birth to my daughter. I'm 36 now. It took me 6 years to finally get diagnosed. It was only about 3 months ago that I found out I had Chiari. It started 6 years ago with horrible migraines, then luckily after a couple years those went away but I started having dizzy spells everytime I would stand. Once a fainted, went blind for 5 minutes and blood pressure dropped to 60/40 and was rushed to ER by ambulance. I now have the neck pain, back pain, numbness and tingles in fingers and toes, horrible fatigue, vertigo, ears hurt and ring, have trouble with throat and swallowing etc. I don't know if I would say it got worse for me it's almost like I traded a few horrible symptoms (the migraines and dizzy spells) for a bunch more not so horrible ones. Some days I feel great, others I don't. I helped a friend clean a house yesterday so last night and this morning was pretty bad. But I'm happy to report that I'm having surgery Tuesday. I've done a lot of research and talked to a lot of people. I personally never really heard someone say that over time they got better because I asked that same question. Most either stayed the same or got worse. I also noted that it seemed that of the people I spoke with that waited until their symptoms were really bad to have surgery that they didn't do as well as the ones who had the surgery before it got to that point. Just my own personal observation. My chiropractor also told me that the longer that pressure is being applied on your brain stem the more damage is being done so after 3 months of reading online, watching YouTube videos, talking to people online, talking with my Chiropractor and neuro surgeon, I've decided to do the surgery. I'm only having bone removed and he will thin out the dura. He claims it's not as invasive as opening the dura or shrinking the brains, etc. He said I should be home in 1-2 days. I truly believe that if I believe that I am healed I can and will be healed. It's mind over matter. I honestly can't wait for Tuesday to have surgery. I know I will feel like poo for a bit but that's temporary. Check back with me soon and I'll keep you posted on how it goes after. You can find me on Facebook if you want updates. Keela Hebert McMillian.

    Best of luck to you!!!!

    • jjoshua123444
      jjoshua123444 kekerene

      Posted

      Thank you so much. I would love to keep in touch! Let me know how your surgery goes. I hope you feel much better Thanks for the reply. 
  • b2wc97455
    b2wc97455 jjoshua123444

    Posted

    Hi Joshua,

    Read and listen to these people who had been there, just like I do, I am enjoyng my life now after surgery 6 months ago, I used to be house bound and unABLE TO WALK, BY THE GRACE of GOD I found the best NS and got it done - thebest thing it happened to me - I am still careful now as its early yet - it take 18 monthss totally before patient should start to have their life back - but the sooner you do it the better - ust to warn you'' 2 MONTHS after surgery is hell...

  • Linleel
    Linleel jjoshua123444

    Posted

    Hi Joshua. I'm 57. I got diagnosed last Nov after having blurred vision, dizziness and balance issues. I had surgery June 2,2016 after they did an MRI Cine and found my right side tonsil 8cm was blocking CSF flow. So I had surgery.

    I noticed after surgery immediate improvement in eyesight and other symptoms went away. Took me a couple weeks to get over the nausea from the painkiller drugs and had to build up muscles in legs again, but I managed to get on a flight by the 4th week and go to a wedding!!

    Currently, I'm having some balance issues again. Don't know why. But, I would do the surgery again if I had to. Unfortunately, many people do not have as great an outcome probably because the compression of their skull has pushed their cerebellum against their brain stem and done some damage. It is good that you have a diagnosis- many go for years without getting that. If you aren't having massively painful headaches, I would think that is a plus!! The point of surgery would be to prevent any further damage from the decompression.

    Chiari seems to be a little known, rarely understood disorder. I've had doctors who tell me I don't have it that bad because I never had the classic symptoms. One doctor told me my vision was 20/20 and my other symptoms were all in my head!

    The best thing to do is read up as much as possible and don't let the scary stories put you off too much! Hang in there!!

    • jjoshua123444
      jjoshua123444 Linleel

      Posted

      Thank you so much thats what I have also thought to myself is that im glad that I figured out now instead of not knowing until I was older. From what I have read is that it seems fixing it early is a lot better then waiting until im a lot older when a lot of damage has been done. My main worry is the syringomyelia but since its tiny and if I do get CM surgery that problem seems to fix itself. Thanks so much for this reply.
  • Linleel
    Linleel jjoshua123444

    Posted

    You are welcome!! If you go ahead with the surgery- come on back here for a play by play of the hospital experience. 

    Also- if your doctor is pooh-poohing your symptoms and not wanting to take action- get another opinion. I saw one NS who didn't think mine was that bad and sent me to Neurologist to get tested for other things. It is particularly useful if you are near a university as they have more doctors getting exposure to Neurology and Neuroscience (I'm in Indy and near IU Med Center.)  They are also more likely to be doing research studies. 

    Good luck!!!

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