WOULD YOU SHARE WITH OTHERS WITH YOUR EXPERIENCES?

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Dear All,

I had decompression last year and to be honest I have been blessed that my operation was successful - I am pain and drug free except on the off chance my back is killing me..but nothing to compare prior my surgery. However I fully realized that my health care professionals have a little knowledge of this, for that reason I feel or perhaps assuming after reading lots of stories from this site - it seems not just in my area but across globally - I would like to publish a true story from all of you so that I can give it to health care professionals across the globe I will set up a separate website about this condition - I feel as though we ought to help them the more patients and health care professionals aware about this the better they are treating their patients. For all the right reason I would be grateful if you all could write a story about you and your condition- I also had contacted my local radios to speak about it - they agreed to give me 30 minutes to talk about it - so basically increase the level of awareness - because I used to be scare not knowing what had happened to me - however after finding this site - I learned a lot - therefore my intention is to share ''what is chiari malformation is all about''

Ideally the content of your story would as follows:

1. Your activities prior your condition

2. Your unknowingly symptom

3. How you try to get help That to include how difficult it is due to your health care professionals just do not understand your symptom and seems lack of knowledge of it)

4. How you are coping with that

5. What effect it is with you and your family

6. What do you expect from your health care professionals 

7. What is your situation after surgery

8. Whether it is successful or unsuccessful

9. What do you wish 

OR EVEN JUST A SHORT STORY ..THAT EMPHASIZING HOW DEBILITATING THIS CHIARI MALFORMATION IS AND SO WISH THAT THERE IS A MAGIC WAND TO TAKE THIS AWAY

Once I put together - I will put it in the website and you all can read it

THANK YOU SOOOOOOO MUCH

we have to help each other...THERE IS A LIGHT AT THE END OF THIS TUNNEL IF WE HELP EACH OTHER.

1 like, 7 replies

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7 Replies

  • Posted

    Why don't you write something on your profile than I can see if you are an human or a robot

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    • Posted

      Hi mesilim

      As a person who found these pages extremely useful following diagnosis and the subsequent decompression surgery last year, I can vouch that b2wc97455 was one of the helpful people who responded to myself and others looking for understanding of how others have managed their own CM1 journeys.

      I have never found anyone responding as a bot here , and certainly not b2wc97455 who has taken considerable time to share their own journey.

      Please be respectful of people's real life experiences that may help others in coping with this insidious condition.

      This is not the Daily Mail Web pages.

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  • Posted

    Hello that would be a great idea..but you want everyones story on an other site? Here or on your email?
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    • Posted

      Hi Cakal76334,

      It would be ideal on here - because I can copy print and put it all together - I hope I get lots of help (respond) otherwise - it would be useless,

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  • Posted

    I’ve just been diagnosed after having an MRI because I’ve had a headache continuously for 33 days now with no relief or subsiding. I am having a spinal MRI this next week after seeing a neurosurgeon. He says I have it because I’m fat. And that treatment probably won’t work for me. I have read his research he referred to but lots of others that refute it. I was referred to the headache clinic three weeks ago but because I took 1 Fiorcet from the emergency room they told me I had to wait 8 weeks before I could call for an appt. My neurosurgeon tried to get me in but no. The earliest appts are at the end of May but I can’t make one yet. I have no pain management. My cognitive abilities are worse, my tongue is numb, I have blurry vision and I’ve fallen twice in a week. I’m very frustrated as the neurosurgeon stated I had to lose a lot of weight before he’d consider treatment. 
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