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    Old 11-21-2008, 04:59 AM   #1
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    saint90ms HB User
    Chiari I Malformation Question

    I everyone. I was diagnosed about 3 years ago with a 11mm herniation below the foramen magnum. The CINE MRI showed a small amount of flow anterior to the spinomedullary juncture and no flow posterior to it. My question is this. Can the size of the herniation get bigger as time goes on or does the herniation / flow basically stay the same through one's life. I am 40 years old and of course nervous about what the future holds. If anyone has a similar story, I'd love to hear from you and your thoughts on this. (I do not have many symptoms although the ones I have, I've just learned to live with).

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    Old 11-22-2008, 01:22 AM   #2
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    scout316 HB Userscout316 HB User
    Re: Chiari I Malformation Question

    hello saint

    Chiari is so complicated if you ask me my opinion.I had a whole lotta ugly symptoms when I first became ill,but most of them have diminished.I have a complicated B12 hidden deficiency.Low B12,Chiari and MS all have similar symptoms.So the neurologists I saw said that I needed to get the B12 treated first.They said Chiari is just a way to blame "other" symptoms on.

    So I get monthly B12 injections and it has helped me tremendously.I still have problems,but mine seem to only flare up when I have menopausal hot flashes,night weird!I really think there's more to Chiari then the medical profession knows.How can some people have no symptoms or different symptoms?I was thinkin' maybe it's whether your CSF is blocked....then there are people who have the decompression surgery and do get better or don't get better or get worse.......what a "gamble" that surgery sems to be.

    I know a girl that had the surgery and was okay for awhile and now her cerebellum has slumped back down Again!She had a 7mm herniation then had surgery and now it slumped 7mm Again!She takes topamax and klonopin and had horrible pain daily.Now they want to do surgery on her Again.....I think it's all so risky.....I don't like the odds of it getting worse,you know?

    Would you mind comparing your symptoms with mine?Well here's my symptoms:
    muscle weakness(arms/legs)better,but comes back when having menopausal hot flashes
    spasms in throat(occasionally)
    weakness in hands/feet(better,but gets worse with menopausal symptoms)
    fatigue(most of the time)
    frequent urination(most of the time)
    urge incontinence(most of the time)
    excessive thirst(always!)
    pressure in lower legs(when sitting/standing/walking too much)
    impaired position sense(has gotten better)
    impaired touch perception(has gotten better)
    shuffling like walk
    simple sensory seizures(hardly have these now)
    Lhermitte's sign(occasionally)
    Romberg's sign(still have this....Always!)
    Tinnitus(off and on)
    Sore Tongue(better,but still sensitive)

    Symptoms seem to get worse with hot temperatures and also some with cold temperatures

    most annoying symptom is the muscle twitching in my ankles/feet

    my herniation is MRI said it wasn't was just tonsillar ectopia...figure that one out.

    the symptoms I had that are gone now are:
    parathesis(pins 'n needles)in hands/feet
    severe anxiety
    breathing difficulties
    extreme pain in whole spine
    extreme pain in shins
    taste impairment

    So that's my history...the B12 has helped me so much,but I'm still not feeling great....some days I feel like I'm so disabled...other days I feel pretty good and other days I feel just like I'm existing.

    I first became ill in 1996.....and in 1999 I was dx with hidden B12 deficiency and my MRI showed mild brain atrophy(no chiari) and then my MRI in 2006 showed no brain atrophy,but a 6mm herniation(with no other characteristics consistent with Chiari).

    Well it's nice to meet you....sorry I couldn't be of more help to you..I hope you post back againtake care~Scout

    Last edited by scout316; 11-22-2008 at 11:17 AM.

    Old 11-22-2008, 07:19 AM   #3
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    Re: Chiari I Malformation Question

    Hi Saint~

    I am also a fellow chiarian The size of the herniation isn't always the cause of symptoms so much. It can be small and thick, blocking the CFS flow and presenting symptoms.

    You seem to be dealing very well with whats going on with you. And learning to live with the symptoms you have is a great approach. As far as the herniation getting bigger, you really must take precautions in life to prevent that. No heavy lifting, pushing, pulling, or straing. If its a struggle, dont do it. Don't lift things over 10 pounds. No contact sports or amusement rides. Anything that can cause sudden jerks to the head and neck should be avoided. bumping your head as well can make things worse.

    I find that I'm much more cautious with my body since my diagnosis and I treat my body with care. My whole life, I believed I was super mom and did things without even thinking. If something was heavy, I'd struggle with it anyway. No more of that for me.

    Having surgery as Scout said is a drastic decision. And a very personal one. And it all depends on how chiari is affecting your quality of life. I have decided to go forward with surgery because I had a spinal tap over a year ago which has taken away my quality of life. I had tethered cord surgery in June of this year. I also have cranio settling so my skull is sinking into my spine. I am in alot of pain daily and I feel that for me, I have to at least try to help myself and go forward. I'm petrified just like everyone else but I cant see that I have much choice but to go forward.

    I wish you well and be very kind to your body

    take care


    Old 11-22-2008, 07:37 AM   #4
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    saint90ms HB User
    Re: Chiari I Malformation Question

    Hi Scout & Cindy .... (and to everyone else out on the boards)

    thank you kindly for your replies. I really appreciate you taking the time.

    I just had another MRI done yesterday because they want to compare with the MRI I had done back in 2006. The doctor seems to think that something might have changed in terms of the chiari size / blockage flow, etc. I do not have severe symptoms. Although I do expereience more leg problems that in the past. They sometimes hurt beyond belief especially when doing stairs or bending over a lot. It feels as if there is a 50 pound weight on the right leg especially. I've been having a lot of headaches that seem to wake me in the very early a.m. hours. THe pain is in the center front part of my head and it really takes my breath away. Then after a minute or two after waking the pain dissapears. Really scary!!! I do not normally get headaches in the middle of the night or while sleeping, so this is something new. I've also had lots of concentration problems. I am a financial coordinator and lately have been having trouble focusing and reading. I've also had a lot of right arm weakness, but nothing that I can't deal with (at least for now). I sometimes block it out, so that's a good thing. I've really anxious to get the results back. My doctor ordered a brain MRI/Thoracic/Cervical. I going to get the results on Wednesday of this week.
    Again...thank you so much for posting!!!

    Old 11-22-2008, 07:52 AM   #5
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    Re: Chiari I Malformation Question

    Hi Saint~

    Your pains in the legs are very familiar to me. I could hardly walk. It was like rubber bands tied around my legs and the pain was like you would imagine someone with arthritis. Stairs for me were horrible and I live on the 3rd floor. My family would stand behind me and push my butt up the stairs. For some strange reason, when they pushed, I would walk more normal without the strain.

    Come to find out, people with chiari are know to have tethered cord. The band at the bottom of the spinal cord that attatches to the tail bones stretches too tight and it drags down the brain. They snip the cord at the bottom and then the cords floats freely. I had this done and my leg issues have improved dramatically!! I can do the stairs all by myself And the pain is gone. I can now run (but it builds up the pressure in my head to do that so I don't LOL) So thats something to look into. The brain stem on the MRI will be elongated. On a normal MRI is plump. I can see this on my own MRI. The other thing that was an issue was bowel and bladder issues which my surgery has helped this alot.

    Of course, the cognitive issues are still a big thing so I can sympathize with you there. It makes it difficult when your trying to be productive in your job.

    I just wanted to pass the TC thing along. This may be the cause of your leg issues, and not the chiari itself. If I had to do the surgery all over again, I'd do it in a heart beat because of the results I recieved from it. I now have normal legs , but a very abnormal head still

    Take care


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