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Next Steps after Chiari 1 Malformation Dx?

Hello everyone, I'm hoping someone can give me advice.

Finally, 3 months after getting hurt at work, I've been able to see a decent doctor that sent me for an MRI of my neck and was diagnosed with a 10mm Chiari 1 Malformation, disc bulge at C5-6, cervical stenosis, and a reversed cervical lordosis.

Now, I'm only 20 years old, never had many serious problems with my neck. But since I got hurt, I've had the worst neck pain at the base of my skull and the worst it gets the more other issues will pop up; like pain radiating from my shoulder to elbow in my right arm, random tingling in my palms, fingers and toes, a severe headache that makes it feel as if my brain is rattling around in my skull. When the pain gets really really bad I find myself having to physically hold my neck up with my hands because it will fall forward. I have a good number of other symptoms that align with the chiari malformation.

We figure the onset of symptoms happened when my patient yanked me down during a combative episode. I'm still off work, but school has started back and I'm in classes from 11am to 9pm and the strain has almost killed me (almost passed out while driving home).

My doctor tells me she doesn't want me on pain meds because I'm so young and keeps telling me to just take OTC pain relievers. I have 600mg Ibuprofen and I'll take 2 of those every 8hrs, but it never touches the pain. I can't sleep in a bed anymore, laying straight or with a pillow hurts so I sleep in my recliner. She says the only thing she can do is maybe some shots, possibly pain management, or to just release me from her care (she's an orthopedic). I'm hoping she will refer me to a neurologist or PM instead of releasing me because I don't know what I'll do.

Has anyone else had these issues or diagnosis? Would pain management be feasible or should I try getting a referral to the neurologist first?

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Comments

  • Hello.

    I am also a Chiari 1 patient who has undergone 2 decompression surgeries in 12 years. Mine was diagnosed after a work accident as well. I think a consultation with a neurologist and a PM doctor would be a good call. I do not see why you couldn't do both consecutively. Be careful with online research on sites that are not reputable. This site is a good resource.  Although I have had 2 decompressions and C-5&6; C-6&7 fusion, I still see a neurologist and PM doctor regularly. When all of this started I went through several PM doctors. I found some that were nothing but pill pushers and I refuse to live my life on long term pain medication. PM has come a long way in recent years. You are your own best advocate. It sounds like you are familiar with the medical profession so do not give up! Best of luck to you and I hope for better days ahead.

  • I think you need to find a neurosurgeon/chiari specialist immediately. I was born with thoracic outlet syndrome, at 40 the drs decided it was an emergency, it made me worse. I also have deg. disc disease, have had c7, c5/6, and then a paralyzed vocal cord operated on. Then in 11 I needed my l4/5 operated on because I would be at work and just fall because my sciatic nerve was involved. I’m now disabled, I hate that word, I’m numb from the he top of my head to my toes 24/7, it never goes away but can become worse. I was just diagnosed with a empty sella syndrome and Chiari type 1 w/a herniated tonsil??? Anyway, I see pain management, I’m on meds that I detest taking however injections, p/t etc. and nothing helped, and honestly I wouldn’t be here if not for some relief but they never take the pain away just take the edge off. I say to see a neurosurgeon immediately more so, other than all of the horrible things you are living with, you are young enough that they hopefully can take care of your issues and hopefully they will listen and care so you don’t end up like me. I can honestly say the bone, muscle and joint pain is horrible but having permanent nerve damage is enough to make me mental. I’m sure you are scared, I know I am, I wanna know where was this diagnosis before? I know after all the surgeries I have had that they have images of all of these issue areas and never saw it??? Take care of you because you are your only advocate!!! Best wishes. 

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  • LizLiz Posts: 9,646

    This is an old discussion created by a member no longer on the forum so I have to close it. If the member revisits the forum we can reopen the discussion if requested

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
This discussion has been closed.
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