Hi, new to group but not Chiari, my story

Welcome Greetings and Introductions
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Hi all, I was finally diagnosed with Chiari in 2001. The short version of my story begins in '98 with a diagnoses if nystagmus. I saw a neuro opth who tried telling me I had everything under the sun except Chiari (I actually found out about Chiari myself from a friend on another chat forum). When I questioned this Dr. he said" you have it it’s insignificant and is not the cause of your nystagmus and headaches (I had headaches by this time). I didn’t like his answer so I went for a second opinion, didn’t like that one and well…third times a charm. By the third time I had been on neurontine for the headaches and they were under control and I learned to live with the nystagmus.

My herniation is 15mm and I also have basilar invagination. I attempted the decompression surgery twice and both times had panic attacks (the first one was in the ER and the second time I never even made it out of my apartment). Since I was stable at the time there was nothing to be done for me except keep me on neurontine.

I have been stable until 2013. Sometime towards the end of 2013 I started getting a burning/prickling sensation in my head and face. I went trough several tests and another MRI. All came back fine, my chiari remains unchanged. The sensations in my head and face continued on. Fast forward to the end of Aug. this year. The burning moved to the back of my neck, I started getting nauseated, diarrhea, dizziness, headache in my temples, tingling in my hands, arms,feet,legs,pressure in my head,ear crackling in right and/or left ear, neck cracking, tenderness/pain along the whole base of my skull to the point where I think it’s swollen (it is not). My neuro seemed to think it is/was all anxiety related (I had just lost my 17 1/2 yr old cat at the beginning of Aug) so he kinda blew it off. I finally saw my neuro opth that diagnosed me with Chiari back in '01 (he is now in a different state) and he seems to think it is Chiari related. I am going to see a neuro surgeon Jan. 4th to discuss my case. I do not want to have the surgery as I am terrified.

Right now I am just an emotional wreck and can’t seem to get a grip on this situation. You’d think at almost 41 I’d have it together,right? I don’t understand why I was stable for so many years and then all of a sudden everything went to heck in a hand basket. I guess I just always assumed that my original symptoms were all I’d ever have of this and that it would never get worse as long as the Chiari itself didn’t change. Heck, I even went to the ER at the end of Aug. because I was so scared of all this. All tests at my lovely 5hr long ordeal in the ER showed nothing including the MRI. As far as I know, my csf is not blocked or so I was just told last month by my neuro opth who is a Chiari specialist. I just don’t get it.

Thanks for “listening”. There’s a lot more I could include but this is already long :slight_smile:

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Welcome here, Monkeygirl18. You’ve really been through the wringer, haven’t you? You’ve come to a perfect place to unload: the good people here know exactly what you are dealing with. The beauty of Ben’s friends lies in the peer support we offer each other: you, too, understand what it means to go through the diagnosis “mill” and to live with this condition. Reach out to the others here, and you will find that by holding virtual hands you are both steadier.
Again, welcome. We’re glad that you found us, even if it’s a shame that you need to be here. We hope that you’ll be glad as well.
Seenie from Moderator Support

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I totally understand being scared nervous about the surgery in my case I had to decide surgery was needed asap or keep dealing with the pain and other symptoms which made daily life hard. I have spina bifida and am in a wheelchair so have to do transfers and it was starting to affect my hands and balance. I wish you luck on your appointment and hope you don’t have to have surgery or at least not yet.

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Thank you. I am scared but what can I do? I just wish 15yrs ago when I was diagnosed with it I had been told that the symptoms could change without the malformation changing. That I suppose is the troubling part, how can the symptoms change if the malformation is the same. Every single MRI from 2001 to the two I had done this year are identical, no blockage, no shifting no anything. Anyway, just want to say thank you for accepting me into the group.

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Monkey girl you must remember that everyone reacts to conditions differently. Also just to be simple, even when you may catch a cold a few times a year, you may react differently each time you get the cold. I know when I was diagnosed 1 1/2 ago with Chiairi the doctor I’d warn me that if things get worse I may have to do surgery but now I find out I don’t have much time before surgery before things get worse with me. Thevsymptoms may change but not necessary anything else. I know it varies with me constantly and there is never two days that the same, which is very strange feeling. You just need to have faith and hope that things will somehow work itself out. Wishing you the best.

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Thank you Tazz. I am slowly coming to grips with the situation. I see one neurosurgeon on Jan. 4th and one on Jan. 10th might need a third as a tie breaker :slight_smile: I am just taking things day by day. Thanks again for your kind words.