Secondary/Acquired dystonia with chiari malformation?

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Hi everyone this is my first post on here and I am looking for any help on chiari malformation and dystonia. I have a brain lesion and an 8mm chiari malformation. In October last year I had full body dystonia and that eased to just eye spasms, however, the full spasms are back this week. I have found websites that suggest chiari malformation can cause secondary or acquired dystonia but the neurologist is adamant this is not the case. I just wanted some information from those that know about it. I have terrible spine and head pains, especially the neck and balance/walking issues too.

Thanks for any help.

Beth.

 

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  • Posted

    Hi Bethany , I have CM1 and have no clue of dystonia, as i myself is not experience with my own, but I have read my condition and also learned from you tube and website as well as from others support group as this and bens friend which i think quite help full for me.. best thing to do , in my personal opinion is to get your neurologist to help you to speak to some one you know, are you in the UK or USA.. in the UK we have organisation called Ann Conroy trust the nurse (If you call) they will be able to talk to you and help you with the queries you need or something that you are worrying about or at least sign post you.., to some one that can help you,,I have the same experience as you are, my balance, spine, neck simmilar symptom as spasm occasionally on my eyes and right legs (mostly anckle) but not often, but my health care team neer mentioned about dystonia..as the time went by my condition got worse and worse,,,aparantly if you have CM..people should not do certain activities because my work was always related with driving, exhibition, lifting,carrying some stuff, I suppose if I have had Chiari Malformation that deteriorated and because I have never had symptom only migraine and back pain..I though I was doing too much..until it was too llate when I was colapsed and woke up in A&E got MRI/Contrast Scan when i was diagnosed with CM1.and have been on so many management treatment of headache and \ssri\ but non of them giving me relief..so last result is decompression surgery which is not what the Health care Professional want..as this is not curing either only giving reeduction of the tormenting headache..but come what may surely it is better than suffering for the rest of my life..I just would like to have ''MY QUALITY OF LIFE BACK'' and able to go back to work again..socialise with my friends and family without feeling scare of collapse..or even relying on drug treatment..so my opinion would be..read about chiari from the website..you tube ask your health care professional..make appointment to see them..be proactive..take responsible of your health..understand and accept your condition..then you will be OK..and decide what aRE YOU GOING TO DO ..GOOD LUCK...
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    • Posted

      Thanks for your response. I'm having trouble sending a reply, this is my third attempt, not sure if it's the website!

      ​I am in the UK and currently being referred to a NS on the list. Hopefully they will help me but it's the dystonia that is the most disabling. I hope you manage to get your quality if life back and that i do too.

      ​Best wishes,

      ​Beth.

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  • Posted

    Hi Bethany, that is good that you are in the UK, at least you can get several opinion until you are happy on the other hand have you call Ann conroy organisation do try to get in touch with them see what they say..anyway which part of the UK are you..yes your post is being received ok
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  • Posted

    Hi Bethany, I dont know anything about Dystonia I'm afraid. I was recently diagnosed in December so have been doing a lot of reading about Chiari Malformation and associated symptoms.

    As you also have a brain lesion I'm guessing that they are not sure which is causing your symptoms.

    From what I understand though dizziness, nerve pain, balance problems are a common symptom of syringomyelia. To rule this out you need to have a full spine MRI as the syrinx (fluid filled cavity) can be present anywhere in the spinal column. Not everyone will have this but if you are experiencing these symptoms if you have not already had a full spine MRI I would recommend asking for one

    Also a CSF Flow Study to check for flow restriction which could contribute to the dizziness and head pains

    I would also recommend you ask for a referral to a neurosurgeon which experience of Chiari as many neurologists (and NS with little Chiari experience) do not understand the wide ranging symptoms of Chiari

    Best of luck

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    • Posted

      Hi,

      ​Thanks very much for your response. Unfortunately the neurologist believes I would have no symotoms from the lesion or the chiari but I have managed to get a referral to a NS. I had a full spine MRI in October which showed the chiari, they just didn't bother telling me I had it, my rheumatologist told me and I have just found out it showed bulging discs. I hope they would have mentioned a syrinx but the spine pains I get are as bad and sometimes worse than the head pains. I will wait and see what happens but have very little hope for help at the moment as I have not been treated well so far. Good luck to you too with your chiari.

      ​Best wishes,

      ​Beth.

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  • Posted

    I am not in the UK and was just diagnosed with Chiari malformation type 1...I didn't have a primary care physician because I am never sick so getting into a doctor and a referral to a specialist has been hard to say the least. They found the chiari when I went for an MRI of my cervical and thoracic spine due to a work injury. I started 3 days ago having this uncontrollable shaking in my head and sometimes my right arm goes spastic... Before that I just experienced the worm sensation in between my shoulders across my upper back and burning aching muscles down my arm. As those stopped the head jerking began. The doctors here seem to think giving me pain meds on top of pain meds is a good idea and send me out. I am so frustrated, today I experienced a migraine, followed by head shaking at work...i kept taking vitals of residents and then set in the confusion and dizziness. The emergency room doctor diagnosed me with Dystonia. Claiming it's from one of the pain meds, I argued i had only taken one and it couldn't have been effecting me with in the first ten mins of investing it. I feel flustered and hopeless. please direct me to any site or organization or person that can help. I want my life back.

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    • Posted

      I am sorry that you are also having a hard time. I have not received any help and I am nearly one year on. I was told that I don't have chiari by the NS as I had plenty of room. What pain medication were you given that they believe caused the dystonia? I ask because I only had pain in my body and then four and a half hours after taking Lyrica (also called Pregabalin) for severe pain and subsequent rigidity in my neck the dystonia came. I have not been free from it since. I have not been able to find any other secondary cause for this generalised dystonia so this ONE tablet that i consumed back in October is still a possibility for the trigger. I have found through my research that people who develop dystonia have a gene mutation and something triggers it. For me it is either this tablet or constant urine infections that i had earlier in the year (although this has been an ongoing problem for me as i had a reconstructed bladder, so why it would trigger dystonia all of a sudden i don't know). Of course, there is the possibility of another trigger that has not made itself obvious yet.

      There are some good dystonia forums out there but as fas as getting your life back, I am afraid i have become resigned to the fact that that is not going to happen for me. I live one day at a time, some are good, some are horrendous but i am lucky to have a very supportive and understanding family. I have not been lucky with medical assistance and am very much on my own with this. I hope you have better luck than me but just know there are others feeling exactly as you are.

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    • Posted

      I am so sorry you are having such a hard time. I was finally able to get into a specialist. The diagnosis of Dystonia was removed, due to the radiologist not reporting correctly on the MRI. Instead I have chiari malformation type 1 and spinal cord compression from the bulging disc. I am meeting again with the neurosurgeon in a couple wks. He will then discuss treatment options, but suggested I have surgery to remove the herniation. As for chiari we don't much more past the tonsils have descended 7mm and he can't say with 100% accuracy what symptoms are from the chiari and what are from the compression.

      The medications I was on were flexeril, tramadol, and Vicodin. All of which I have taken before. I only have tremors of the head when I bend over a lot or twist, I am assuming is from nerve damage. The weakness in my right arm and leg are consistent and become more sever the more I try to walk. I also have cluster headaches and muscle spasms now in my upper back they reduced my medication to just flexeril. The slurred speach and confusion stopped when the tremors did.

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    • Posted

      Be pushy. Call them daily to get an appt. Or go see a different doctor. Skip the Neurologist. If you have Chiari 1, you want to know how long the herniation is and if it blocks CSF flow. If it blocks CSF, you need surgery. If you have a doctor who doesn't know that, go to a different one. Preferably one affilitated with a university. Most doctors are totally unfamiliar with Chiari. Neurologists just give out pills. Since Chiari is a rare disorder, no surprise ER doc prescribed the wrong thing. RESEARCH!!! There are many sites out there and also look under Rare Diseases.  Above all else: NEVER GIVE UP!!!

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  • Posted

    Have you had any surgery for the chiari? Since it affects many areas in the brain, it seems possible it could affect the basil ganglia. I have restless leg syndrome which has been connected to Chiari. So little is known about Chiari and there are so many things it could be connected to. I'd get an appt. to see what can be done with the Chiari.

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    • Posted

      The neurosurgeon said i don't have it as there is plenty of room for more herniation. I also have restless leg and many pains in the body with stiffness. I just get an annual mri to monitor the brain lesion. I have given up on getting a neurologist to help and just live the best i can. It does help to find these forums and know that there are others suffering without help.

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    • Posted

      Your doctor first diagnosed you with Chiari and then said you don't have it?? Get your GP to send you for a brain MRI and see a different NS!! Sounds like yours is clueless as they all seem to be!!! Also ask your GP for nortyyptilin for neuralgia, Hydracodone for pain. If you have dizziness or balance issues, get some anti-nausea drug. Above all NEVER GIVE UP!! These doctors are very uninformed about Chiari!!! I've been through 3 Neurosurgeons and seeing a new one in Nov. I've had on every Neurologist all she did was give me drugs and a bunch of tests- I eventually was referred for a Cine MRI which showed 8 cm herniation on one side and completely blocked CSF flow!! Had decompression surgery June 2!

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    • Posted

      Thank you. I'm in England and it's very difficult to get a second opinion. How are you doing after the surgery? I have an annual MRI to monitor the lesion so i hope whatever is wrong will show up eventually. I hope you're recovering well but i know the surgery isn't a permanent fix is it?

      Best wishes

      Beth

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