Chiari malformation type 1

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Hi everyone , I was diagnosed with Chiari malformation type 1 2 years ago I'm 36 and attend the queen Elizabeth hospital in Glasgow , I suffer terrible headaches and dizziness the list could go on , I went for fluid pressure monitoring last year not had any decompression surgery yet i go back to see neurologist in June and go for Mri scans . Feel like every time I go I tell them about how I'm feeling and how much pain I'm in they are not listening I and very worried about my condition and just want to know how down one else copes with it everyday and what's there check up plan with neurologist

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    Hi Yvonne I had a stroke in January am only 37 collapsed in front off my work colleagues it has just snowballed from there having my surgery in the morning and am terrified I didn't think this was real like I was in a bubble I have suffered with head aches for years but never thought this was the reason . Good luck with ur appointment x
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      Aw really it's terrifying because you don't know what to expect next I suffer headaches everyday and nothing seems to help I had Mri scan in February and I had to constantly phone the hospital asking for my results took 2 months and at that I still haven't had a chat About the results feel like there not bothering with me Ive had anxiety and now breathing problems which I'm

      Not sure is to do with malformation when j read about it, it says it can be but neurosurgeon says it's not but he was rushing me the last time o saw him because he was running late , I have a little girl at 4 and most of the time is only me and her and I'm so scared that something happens to me and I'm myself 🙁. I wish they would tell me what the plan is there sending me to a nurse this time it's not even my neurologist who is seeing me in June. feel like there not bothering with me and I feel terrible very day

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    Hi Yvonne, at least you have got diagnosed now, good luck with your appt with your neurologist, my apt with several neurologist and after several medications they finally suggested for me to have surgery, i was the one who did not want it as i was terrified with the story until I met 2 neurosurgeon and join this website as well as i could not cope with the pain that make me decide that surgery FOR ME was the best option to stop from porgessing to become worse ..for me its a night mare, so I am going to have it done in two weeks time...good luck for you
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    • Posted

      Im glad your getting something about it now , I had the fluid pressure checked last year and they says they didn't think I needed the decompression surgery but how am I meant to cope everyday they don't give me any answers
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    • Posted

      I feel for you yvonne, before my diagnosis I saw couple of neurologists and felt like they were just fobbing me off, like I was making it up! Then I got the diagnosis. Mind it's the chiari nurse who has helped me the most and she is still there if I need her, as she sees what people are like after and before op. I would feel lost if she wasn't available.
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      I think you need to tell your neurologist how you feel, obviously the health care professional always suggesgted the operation will be the last option, but if there is no other medication that will help any patient managing their pain then they ought to send the patient for decompression not only to reduce the pain but also to stop the progression..lt us know how you getting on
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      It's nurse I'm going to see next . There's loads of stuff I'm scared to do now but try not to let it get in the way too much like flying , I flew in October last year my two ears went totally

      Blocked couldn't hear a thing for about an hour after the plane landed was scary . I'm going to salou in June so hoping I have no issues neurologist had says last time was ok to fly so if there isn't any major changes in my Mri scan should be ok this time I would just like them to make a plan of what happening with me like is it 12 month check up or 6 month I don't want to be left too long as I'm terrified of it progressing , the headaches are terrible everyday neck pain where the malformation is , nobody in my family understand what it's like so hard to find someone to talk to who can see where I'm coming from .

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    • Posted

      Yvonne, some nurse in brain and spine organisation are quite helpful if you need to speak to some one there
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      I think that's too long apart 6 months, and your quality of life too is suffering. You need answers to what is happening and how much do you need to suffer before anything is done!
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      Colleagues used to think I was making most of it up till they realised when I had surgery how bad it was. Because I looked ok on the outside most days. It mostly effected me worse on a morning and left me with dull headache rest of day. I broke down in my gp surgery and said couldn't deal with back and head pain, seeing how upset I was he refferd me for the 4th time to see spinal surgeon and got my diagnosis. Probably still bashing my head off wall if he hadn't!
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      That's so true nobody understands 🙄. I was going to the gp at least 4,5 times a month with the pain and was told aw ur depressed I'm like no this is like nothing I've experienced before I had to Ask for CT scan and then they referred me for Mri then it was found , if it wasn't for me being persistent don't think they would have bothered helping me out
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      Yes even my spinal consultant whose Indian I think, realised I had just been passed back and forward as didn't know what to do with me. I have bulging disc in back and thank goodness for him he noticed the chiari. I do hope you get some progress your next visit x
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