Chiari Malformation Community
Coming Back, or Something Worse?
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Coming Back, or Something Worse?

Hello, I have been diagnosed with a 13mm Chiari Malformation, and had decompression surgery back in 2007. I'm 20 years old and have been having severe pain for a few months now. It's like a horrible burning/stabbing sensation that affects my feet, legs, hips, and sometimes my hands. I also get electric shock like feelings that go down my neck and make me jump every now and then. I can't stand that. My neck has been cramping up a lot lately, and I'm really worried. I know the Chiari can come back, but as far as I know, it hasn't yet. My last MRI was last year though. My vision has been getting blurred and I see a lot of visual snow 24/7. My right eye has been twitching a lot lately as well. :(
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620923_tn?1439824912


  It is very important to do those exercises in order that ur neck doesn't heal incorrectly......was ur NS a chiari specialist?...even if they were not u would think they would know u have to move...goodness...ugh!!

  Do use a little heat b4 u start to loosen up the muscles.....no more than 15 mins......
    "selma"
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620923_tn?1439824912

  Hi and welcome to the Chiari forum.

Were u checked for a syrinx, and other related conditions in 2007?

It is possible that u have scar tissue that has developed...but, u would think that would have shown up last yr during ur MRI....I am wondering if u have a syrinx that was not found, or a condition like tethered cord, or something going on ...obviously.

May I ask what u do doing the course of the day?

   "selma"
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Hello, Thank you for your response and warm welcome!

I'm not sure what a syrinx is, but I had an MRI of my head which showed the chiari, and after my surgery I had a MRI of my head again, and of my neck. Supposedly, my back is normal according to an X-ray I had done not that long ago, but they might of missed something or it didn't show then.

I really don't do much during the day, since I haven't been feeling good. I'm currently on disability due to all of my problems I have. :(

Roughly:

I sleep late a lot of days until about 12:00 - 12:30. My morning wake up routine (Brush hair, etc.), Then I go eat, maybe play a few video games if I feel good enough to or get on the computer. If I have a doctor appt. I go there, if not I stay home and try to ignore the pain. Take Tylenol if I can't stand the pain, but I try to withstand it without. eat again, Later I prepare for bed, but a lot of times when I finally lay down, I have problems sleeping. Toss and turn a lot due to the pain in my legs and that. :( Probably why I'm so tired in the mornings, and need extra sleep.  
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620923_tn?1439824912

  Well u should have had a MRI of ur thoracic and lumbar spine as well as ur cervical spine(neck) to rule out a syrinx- also known as syringomyelia, it is a cyst  or cavity in teh spinal cord that fills with CSF...if it gets too large it can compress the nerves and cause nerve damage that can not be restored.

Too many Drs only check the cervical spine for a syrinx, but they have been found in the thoracic(chest area) and lumbar(lower back) this one can also help rule out Tethered cord.

The type of pain u mention could also be from a related condition Ehlers-Danlos Syndrome......

Xrays will only show abnormalities with the bone, not if there is an issue with soft tissue, so it would not help to identify some of the issues I mentioned. Many of us do have disk issues, so it is good to have an xray of the spine too : )

Is ur head pain the same as b4 surgery, or worse...is it pain or pressure...and does it change with position...sitting, or lying down?

    "selma"

  
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Thank you so much for the information! I greatly appreciate it! :)


I'll have to ask my neurologist to check for those issues. He just recently ordered an EMG to be done, but I'm not sure if that will show anything or not. I'm going to ask him about those other MRIs now though as well.

My head pain luckily isn't as bad as it was before surgery, as I no longer get headaches when I laugh. I do get really bad headaches at times, but not as frequently. I feel "pressure" in my head, like it's going to blow up. It's a weird feeling that's hard to describe, but it drives me crazy, and makes me feel as if I'm on another planet a lot of the time. :(

Luckily, I haven't really noticed any problems with position changes with the headaches,
however, my neck has been locking up a lot lately and shoots severe pain through that area when I try to move it. :(
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620923_tn?1439824912

  Are u doing post op exercises for ur neck? I am adding a link to a list that I was given ...please read my comments as to which ones I was told to do...not all on the card r for chiari pts.

http://www.medhelp.org/user_photos/show/171420?personal_page_id=197028&photo_collection_id=1369

  The EMG will help let u and the Dr know if u have had ne nerve damage to this point.

     "selma"
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No, I was never told anything about doing any post op exercises. I wonder why my neurosurgeon didn't say anything about that.

Thank you so much for the information! I'll give those exercises a try. :)
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620923_tn?1439824912


  It is very important to do those exercises in order that ur neck doesn't heal incorrectly......was ur NS a chiari specialist?...even if they were not u would think they would know u have to move...goodness...ugh!!

  Do use a little heat b4 u start to loosen up the muscles.....no more than 15 mins......
    "selma"
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Avatar_f_tn
I believe he was since he had many patients with Chiari's that he operated on during the years, but I'm not 100% sure.

I know my Neurologist recommended him to me, due to his experience with Chiari Malformations.


Thanks again! I greatly appreciate the info. :)
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620923_tn?1439824912


  Let me know how the exercises go...and do not over do it...
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