Hello everyone it has been a while since I have been on I hope everyone is doing as well as us Chiarians can. I have had the same unbearable debilitating headache for 15 days now.. Was in the hospital about 2 weeks ago because the NS thought I may have had a stroke... I had no feeling in the right side of my face and body.. Well no stroke just pressure in the head that was extremely severe and I got to tense and restricted... Well I went back to work this week and I am getting nothing it attitude from the medical assistances in my office.... I just wish they had any idea how I feel everyday.. As if the attired at work isn't bad enough my husband is beginning to lose his patience with me and I am so angry at him.... I had a CSF flow study and the distention is 2mm worse in only 4 months.... There is restriction as well so I see the NS again tomorrow and she sd at this point the surgery is my best choice. My question is..... I have this terrible feeling that something is choking me constantly and I can't get it to stop no matter what I do.... Is this a symptom that I should mention tomorrow?
I am so sorry that you are so miserable- I think that we have all been there and nobody but chiarians know what it is like to live with horrible pain daily. I haven't had the choking but have read that many others with chiari have it, definetly mention that to your NS. I hope you get more answers tomorrow and just know that you can vent here it is really hard when you hit the point you can't take the pain and the people around you aren't supportive it is such a tough disorder. Good luck tomorrow!!
Thank you for the well wishes.... It means so much to have a place to cent my anger and frustration without people getting angry.... I will definitely mention the choking to my NS and hopefully tomorrow will bring more answers I am really at my breaking point and it is crazy!!! This disease is unforgiving and people who don't gave it will never understand what we face everyday....
I am sorry things r not better with how u feel and those around u....it is not easy when u have a condition they can not see.....we tend to look ok, so everyone assumes we r.....NOT!!!
I had the choking.....it can be chiari related and it can also be HASHIMOTO'S...do look into it many chiarians do have this.It is an auto immune thyroid issue and if not tested correctly, u can be told ur thyroid levels r "normal" when in fact they did not test for an auto immune issue.
Good luck with the Dr and do add this to ur list to ask about.
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