Chiari Malformation Community
prognosis for chiari????
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prognosis for chiari????

i started counseling last week and todays session he asked whats the prognosis for me?? i said i dont know? i told him chiari is incurable just basically managed. i told him i dont know what tomorow holds for me let alone a year from now. he asked if i would need anymore surgeries and i honestly told him im just not sure. i cannot tell nor predict what the future holds with chiari. im not sure theres an answer to this question??? does any of us chiarians know if we will feel better, the same or get worse???? tough one. he got me thinking that i need to enjoy the good days more because it could get worse, who really knows, right?! i also have eds, autonomic dysfuncton, raynauds, and occipital neuralgia. so to ask me what the future holds is crazy. alls i know is i live in the moment!!!!!
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620923_tn?1416285879

  Hi. u r sooooooo right...seize the day...but in moderation as we all know too well even post op we can over do it ....especially those of us with other conditions like EDS and AD....

It is like asking a person when r u going to feel sick, do they know? No, so how should we?

May I ask who asked u this? What type of counseling was it?
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620923_tn?1416285879

  Hi. u r sooooooo right...seize the day...but in moderation as we all know too well even post op we can over do it ....especially those of us with other conditions like EDS and AD....

It is like asking a person when r u going to feel sick, do they know? No, so how should we?

May I ask who asked u this? What type of counseling was it?
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1823499_tn?1370093889
its a counselor/therapist i started seeing for depression/anxiety and OCD that is getting worse by the day. basically i am tryin to educate him on my illness. i dont think hes going to be able to help with my issues but i will give him a chance and we will see!
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620923_tn?1416285879

  Good luck...not sure if I ever told u about the sessions I had...I was in High school...and each time I went the Dr asked me the exact same questions....after saying the same 3 things, u do not have a brain tumor (he could tell just from looking as no tests were done) ur not going to die (not sure how he could know this) and what do u want to do when u graduate high school....the 3rd time of this, I said I am not going to be wasting my time coming here, and I got up and left....lol...this was for HA's they claimed was anxiety....

I got all the way till I was 48 till I got my chiari dx...I knew it was something physical....ugh...well

neway, be on the lookout for a Dr that repeats himself...lol... and I hope it does more for u then it did for me... ((hugs))
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I don't know how or if counseling will affect your disability hearing, but I hope you keep it in mind.  Make sure he is your advocate.  Some people fight a psych Dx, but IMO, whatever works.  I can't even imagine having any kind of a normal life w/this condition.  I'vebeen asked what am I going to do for Thanksgiving, or Christmas?  I can't make a plan!  

My diagnostic code--which was important to me, fighting the CFS one--is "depression due to chronic illness".  My therapist has RA, so she really understands disabilty.  She had to drop down to part time work, knows what pain & crushing fatigue is.

I hope your counselor has a good heart; you ought to know early on.

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620923_tn?1416285879

  This is a disability hearing...there is a thread with tips to winning,...u should check it out....

I found the link on the thread -

http://www.disabilitysecrets.com/
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I just been recently diagnosed with Arnold's chiari malformation, because I had ongoing headaches, floaters, vision issues and memory problems! Upcoming I see a doctor too see if I need surgery! However what I read isn't surgery risky? I been thinking about just hanging in there as long as I can. I have epilepsy also! It is a scarry thing to think about! LOL
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

  Yes, as with ne surgery there is always a risk, but ur Drs should only offer surgery if the benefits out weight the risks.

  But not ALL Drs that offer to do this surgery know ALL the risks, which is where some of the sad stories u read about....find a true Chiari specialist...have ALL the testing to rule out ALL the related and non related conditions....and a Dr that knows what precautions to take if u have ne of those conditions....finding out post op will likely mean ur recovery was hampered....

We are all different and not all with Chiari need surgery, but without the testing u will not be able to make that decision.

I had surgery 5 yrs ago last month....and I have no regrets and I had no set backs as I did have wonderful Drs that knew Chiari and related conditions and were also well experienced.

Know u r not alone.
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