Chiari surgery post mri of neck

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Hi everybody, I thought I was doing well after my surgery May 9, except for the neck pain. My dr ordered a MRI of my neck. Yesterday I had a follow up appt. He said the pain in the left lower part of my head is post surgery and if it doesn't go away in the next few weeks he can give me a shot to help because their is a nerve there. He them went on to show me that in my spinal canal I have whait mattter that he believes to be from MS. I said I didn't know what that is and he told me it is a autoimmune disease that attacks the central nervous system. Does anyone else have this. I am very worried. I am not sure what to expect, I have an appointment to go to the MS clinic Aug. 1 I was happy that my surgery was over, I felt like I was feeling better, looking forward to my life without headaches. Now my future feels very uncertain. I don't know I am looking for anybody's opiinions. I tried looking up Multiple Sclerosis, but their is so much. Four different types, 10 different symptoms, relapses, I got very overwelomed and turned off the website. Thanks 

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  • Posted

    Hi there. I cant help in regards to the MS detail....and understand your being overwhelmed. I was the same as our son had some complications after his Chari Surgery with Hydroscephalus.

    I can tell you the experience with my 14 son and neck pain. He has recently had decopression surgery (20th June) and developed neck pain about 2 weeks afterwards. My reading lead me to undestand that this is the most common post surgery complaint as they lift and pull aside the muscles of the neck to access the area. We werent told anything about this by the Neurosurgeon etc, and I had to find out myself. They did however confirm this at the most recent checkup.

    We gave hime Valium for a short time, and it relaxed everything, and our experience was that it settled about an hour after taking, and then all together about a week after that.

    Good luck with everything.

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    • Posted

      Thank you for responding. It is so frustrating, if they( drs), would give more information to the patient about what will happen after the surgery, or tell you about this website  maybe I wouldn't have such a range of emotions.  Thanks again

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  • Posted

    Wow I'm sorry it suck to fix one thing and to find another my neurosurgeon on post op. Appointment said to me I'm sorry looks like I opened Pandora 's box my husband was so mad how do u fix one thing they say they fix arnold chiari and now I might have epilepsy and like u. Now u have ms it just wow

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    • Posted

      Thank you, I sorry for you too. I asked my dr., worried, were my symptoms really the from chiari . He said definitely, the mri showed it. But with all the CT scans, mri , mra, and other test they didn't have one of my neck. He said with this one and list of symptoms he says that its MS. I first got scared, And now its frustation, I am a very can do person, what can I do to fix this type of person. but right now its the waiting game, I don't have enough information to make a plan of action. Sounds kinda like a funny thing to say but thats just my personality. I wish you the best. My son had epilepsy as a child and was able to get better. He was 11 years old and was on dilatin medicine until I think it was 14years old. He had several EEG with no reaccurring symptoms so they slowly weened him off the medicine. I hope things go well for you. I'll pray for you. 

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  • Posted

    Oh you poor thing. Only thing I can say is I have chiari and my younger sister has mild Ms, our symptoms are very similar. She asked our gp to chase up her x ray to see if she had chiari. But nothing pointing to that thank goodness. She manages her Ms very well and does better than me, but so simular she thought I had Ms! Good look hun x
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    • Posted

      Thank you for responding. It helps to have the encouragement of others. Stength in Numbers, right. can you tell me what her symptoms are and what are relapses. How do you know, it kinda sounds like you can have multiple symptoms. I know i do but I didn't know it was from MS. I just hate the wait, I don't know what kind I have. Or whats about to happen next. I am not a very patient person. thank you again for your thoughtful message.

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  • Posted

    MS is where your body attacks the myelin sheath on the nerve. You can eventually have similar symptoms to Chiari, esp. Loss of muscle control. My mom had it. You will need to get a lumbar puncture to diagnose. I hope it's not MS- good luck!

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  • Posted

    How old are you?  My mom got MS when she was 45 but most people get it when they are younger. It starts out with wierd symptoms like Chiari- so when I started having Chiari symptoms I got tested for MS. But don't have it. Anyway, there is muscle weakness, legs cramping, leg twitching and jumping, tiredness, vision issues eventually. Nowadays, they have more medical treatments for it. Back in my mom's day, they had nothing except Valium for the leg cramping. And you can have relapses.  Hang in there and don't give up!!

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