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Newly Diagnosed Chiarian

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gillian08410
gillian08410

Hi I am new to the group, I just recently was diagnosed with Chiari Malformation about a month or two ago. I was referred to a Neurosurgeon who then referred me to a Headache Specialist. After going to the headache specialist twice, she put me on meds that did absolutely nothing to help and caused horrific side effects. I have made an appointment with the Neurosurgeon for the first week of April. I am super nervous to go but I really am hoping he can explain this to me a bit better than all of the previous doctors I have seen. Most of them have just told me "the chiari was an accidental finding, that is not the source of your issues" but then they later state that they do not know much about Chiari. I am frustrated because for over three years I have been trying to figure out what is wrong with me. for a year straight I did not eat any food and was barely surviving off of ensure drinks, doctors told me I was crazy, that there was no reason for me not to be able to swallow, and that my headaches were not correlated to this what so ever. Now I have been diagnosed with chiari but the number it is at is very low but these are my symptoms:

    headaches, 

    memory loss,

    trouble balancing/walking

    trouble swallowing, eating food

    numbness in hands

    loss of feeling in both legs

    ringing in ears

    

now I know that may not seem like much but it has begun to ruin my everyday life, I can no longer do my everyday activities that I used to. I don't know if I will be a candidate or not for the decompression surgery but I am running out of options. I have taken medications, done physical therapy, and much more but nothing seems to be working. I am worried because I have read other peoples stories on having chiari who have had an unfortunate turn of events with it and I am very worried that if mine isn't treated it will become much more severe as time goes by. Anybody have any advice? or even if you think I would be a good candidate for the decompression surgery? or even tips on what I should bring with me to the neurosurgeon appointment that may be helpful. anything helps really. Thank you so much. 

1 like, 6 replies

6 Replies

  • Stable2309
    Stable2309 gillian08410

    Posted

    Hi gillian08410

    First up, sorry your suffering. Unfortunately Chiari is one of those things that appears hard to pin down. Many sufferers may experience a smorgasbord of different symptoms. and there are no points for accruing more than someone else.

    Many health professionals have differing views on the impact and even the cause

    I had a neurologist tell me point blank my symptoms of occipital headaches, fatigue, memory loss were nothing to do with CM. The NS said the following month that it was down to CM and recommended decompression, which I had in August last year. But surgery is now a one stop shop panacea that solves all issues. I was told in January the CSF should be able to flow now and passed back to neurologist to help with my ongoing headaches, cognitive, memory and fatigue issues.

    Book in to see the best people you can for CM. In UK there is a list of people on the Ann Convoy Trust website. If you don't have confidence in someone, don't fret, just move on. This is a condition that changes many people's lives considerably, so give yourself a break and work on the things you can cope with, not the things you can't.

    Let us know how you get on

    • gillian08410
      gillian08410 Stable2309

      Posted

      thank you so much for replying! I have booked an appointment with the only neurosurgeon to work with chiari patients in my region of the US, (there are not many neurosurgeons around here at all). I am looking forward to meeting with the doctor and I am hoping to get some sort of insight as to what is next, I have exhausted every other option other then surgery. In a way I am kind of hoping for surgery, because I am afraid to just leave it alone and watch, and I am getting sick of temporary fixes for a permanent issue. I am hoping to get some sort of relief from this appointment. I will try to update everyone after I have met with the doctor. I am just really hoping for a reasonable explanation as to what to do. I am afraid to wait and see what happens as I have read that there are patients with chiari that can end up with more serious issues if not acted upon. So I am really hoping for some sort of insight and next step. 

      Thank you again. 

  • b2wc97455
    b2wc97455 gillian08410

    Posted

    Dear Gillian,

    Well you should thanks GOD that at least they finding what the cause of the symptom, each individual different but more less are likewise - some feel worse than others for example I suffered so much I was really felt like wanted to ending my life - but luckily my health care professionals were really cooperative with me - I used to read lots about our condition just preparing to be able to explain to my gp, neuroloigst, consultants what is all about ..as majority of them are lack of knkowledge - I printed lots of information for them to have discussion with me in the end they were very helpful first they were skeptical..but to seeing how struglled I was and told them I would rather die than feeling this..then the help from counselling, medicine and of course finally operation.the minute I finish my surgery 85% of my ymptom gone then 6 months after that gradually get better and now I am drug and pain free -  but ALWAYS LISTEN TO YOUR BODY, READ ABOUT CHIARI get it from Mayo Clinic - Ann conroy trust and other web site - google it - the more you know about your condition the better explain it to your gp and specialist - Good Luck...

    • gillian08410
      gillian08410 b2wc97455

      Posted

      thank you, 

      I am really hoping for the decompression surgery, although it is really scary to think about it but I just don't know what else I can do. I've gone through multiple medicines and steroids that are not doing anything to help and cause more issues. I have taken myself off of all of them, and I have tried more natural ways. Everything I do doesn't seem to be working and it is becoming a burden on my everyday life. I am a college student, I go to school full time, and work as well I don't have time to be having headaches like these in class or having trouble getting out of bed because I can't feel my legs and I am not able to walk. 

      But thank you so much for answering it really means a lot! smile I will try to keep everyone posted after I have met with the neurosurgeon. 

  • j031017
    j031017 gillian08410

    Posted

    Hi gillian

    Have you had an MRI to diagnosis Chiari? Are you uk?

    My consultant report seemed to concentrate on size of cerebral tonsil descent and size of syrinx rather than symptoms and quality of life which is so frustrating

    • gillian08410
      gillian08410 j031017

      Posted

      I have had 5 MRI's and each one confirmed that I had Chiari, I don't see the need for all 5 MRI's considering they are very expensive and insurance companies don't always seem to want to cover them. However, yes I was diagnosed. I am going to meet with a Neurosurgeon near me and figure out from there what the next steps may be. 

      Thank you,

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