Help is this normal Chairi Malformation symptoms???

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Hi everyone I'm new and I'm posting on this forum for the first time. I have recently been told that I have a hindbrain herniation from a Neurologist. To summarise my history I had a slipped disk diagnosis via MRI 2015 and have been tingle free for some time. I got married last year and had botox in the base of my skull and neck to deal with headaches and was copeing ok until the headaches started again in Dec 2016 and nothing worked so went back to physio. Then I took my kids trampolining in Feb 2017 and was kneeling down on the trampoline when my sons bounced and my neck snapped back and ever since then I have been in pain with the return of the tingling and each week has seen new symptoms added to the list. I was referred back to the Neurologist by my doctor as my symptoms were tingling in hands down the spine, vertigo, sickness urge incontinence, permanent headache in lower skull, ears with screaming tinnitus with neck shoulder and back pain. Driving over bumps caused pain surges and sometines the tingling would occasionally spread further like scatica was across the middle of my back into one foot but this was not a constant. Three weeks after my referral I saw the Neurologist by this time I'm tingling in both hands both feet down my left buttock and up through my whole spine particularlly across the back a of my ribs continually. The Neurologist had the MRI I had done 2015 in front of him and mentioned a slight hindbrain hernation on scan and booked me in for an MRI of my neck and lumbar spine the following week with a follow up appointment for the results two weeks later. His concern was that although the tingling etc could be related to the hernation that my headache is not typical in that it's always there like a pressure pain of varying levels but it's not brought on by coughing or sneezing etc. I am sad to say in this short time my symptoms are increasing daily. I tingle into my neck now and i keep having the dizzy like spells on when i get out of breath through hill walking etc and i can only describe it as being in a bomb scene in a movie.. my ears are screaming and i go completely disoriented and my vision goes like someone has put on some strong prescription glasses. Then in calms down quickly but i feel a bit like I'm spaced out which is then followed by a huge adrenaline rush for a couple of hours. I just don't know what's happening are these normal chairi symptoms? I can remember years back sneezing making my head hurt but the headache now is permanently at the base of my skull and occasionally in my sinuses Sneezing or coughing does not bring it on or make it that worse just a bit more pressurised.. My ears ring all the time but sometimes scream for more apparent reason and i feel like i want to be sick most of the time and on top of that Im exhausted. My head hurts all the time to varying degrees. Has anyone else had these symptoms?? Is this was Chairi suffers have? I guess I'm a little afraid as everyday more often than not, i feel a little worse although. Today I don't even feel safe driving as I'm so dizzy and sick I've just come to bed. Can anyone make sense of what's happening to me???

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  • Posted

    Just saw your post and what you are experiencing sounds like Chiari. All of us have different symptoms. It's hard for us to get people to understand what we are experiencing. Doctors in general don't have a clue except for neurosurgeons. Personally, I had decompression surgery on 2014. I got some relieve with my balance. My symptoms are so bad my family had to send me to Assisted living. You might find some help at Chiari UK. Is there any specific question I can help you with? Just know you are not going crazy and there is a world of Chiarians waiting to help and support you.

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    • Posted

      That's awful you are in assisted living. I just feel like every day something else happens. I am confused though as i thought the head aches were brought on from coughing or sneezing etc. My sinuses are feeling pressure today along with my left toe feeling like it's burnt/frozen and my ears feel like a baby's heart beat. It's very worrying i have three kids and am the main provider for my family and just want to give up and go to bed.

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  • Posted

    Hi

    Apple63 has given you a good reply. I think just to back up what they have said chiari is very different for everyone. The symptoms are unique to each individual. Your certainly not going mad!! I had many of your symptoms and had decompression surgery November last year. Iv been 6 months in recovery and going back to work in 2 weeks!

    My symptoms increased daily and I was so lucky to get a gp and Neuro surgeon who took chiari seriously. Your pressure headaches are classic of chiari and unfortunately many of us including myself have seen a consultant at some time or another who does not understand the symptoms of chiari. If you don't feel happy with what you are hearing change ns. This is your chiari and your life seek out a ns who understands chiari you might find a pleasant surprise and feel heard. If you have any questions just ask good luck x

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    • Posted

      Thank you. So you had rapid symptoms? Today as i mentioned above its baby heart beat in my ears; sinus pressure and burnt/frozen toe. On top of everything else. I'm seeing the Neurologist again after and MRI on Friday. How have you been since surgery?

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    • Posted

      I also have numb spots and my left foot often feels like it's in a bucket of ice! It's taken me 5 months to recover from the surgery cos the decompression surgery can cause new temporary symptoms like low pressure headaches in your frontal lobes. These believe it or not are eased by caffeine! When you go and see your neurologist have all your symptoms wrote down and take with you a copy of the Ann Conroy trust information pack which can be printed from the internet. This outlines many of the symptoms. Most importantly do not let them fob you off. I saw one Neuro surgeon who said non of my symptoms were chiari rated I saw him privately! I then saw a ns on his 3 weeks later who specialised in chiari malformation and I was having urgent surgery a week later! Don't take their dismissive attitude! Good luck for Friday let us know how you get on x

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  • Posted

    HI there,

    How are you getting on now?, just remember if the symptom can be managed by medicine, alternative theraphy then I will choose that, but if your NS advise you to have decompression..do it as soon as possible.

    I am on the 10th month AFTER SURGERY..i STARTED GETTING MILD HEAD ache now..but apparently each individual different...but my spine (back) getting worse..still I did not regret it with having sugery - as at least I do not black out any more when sennzing or coughing

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    • Posted

      I'm still not great. I have had a better week this week but feel dreadful again today. The Neuro surgeon said that the neuro radiologist said I had a Cerebellar tonsil ectopia rather than a chairi 1. He has referred me to a Neurologist and requested a brain MRI and CSF flow study. I'm having these on the 9th May the only problem is he cant find a Neurologist to refer me to at the hospital I am with so I will call my docs on Tuesday. Thank you for asking.

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