I think I have chiari. I know autoimmune diseases can cause this, but I think mine may be morecaused by the shape of my skull -
which in that case is called platybasia.
I really don't know what to think. someone (a stranger) contacted me on line after readin g my symptoms I put on a support page for either B12 def. or one of another things im out there on.
she wsa sharing her own experience and told me she has vowed since her chiari surgery years ago that she will help as many people as possible with this unknown , faultily "rare" disesase
similar to lyme in that regard- drs know nothing about this!!!
so here I am suspecting this on my own for several months now and this person shows up like a puff of wind and God takes me on another road of this journey!
I had MRIs done and I can see it there, but this is very hard for me to get sunk into my brain. no pun intended. ok, maybe a little pun.
so. anyway. if anyone here knows about this unknown thing PLEASE talk to me about it. I am freaking out. not only for me, but
if I have this then chances are a kid on mine will have it too. and that is heavily on my mind. I DON"T WANT THIS!!!! I am so tired of fighting something!
Posted by Lymetoo (Member # 743) on :
If you for sure have chiari .. then get checked for EDS ..
Many with EDS have chiari .. and they also have MCAS.
You need to know.
Are they planning to do surgery?
Posted by Lymetoo (Member # 743) on :
First of all, get to a good neurosurgeon and get their opinion. Ask around before you pick the neurosurgeon.
There is a top notch one near me. You may not be far from me here in Maryland, so if so, pm me and I will give you the name. You would be in good hands with him.
From what I am reading, often you only need some bone removed from the top of the spine. This doc did this for a friend of mine recently. It was a quick and easy surgery--and the lady was 85 years old! She loved this doc, by the way. Everybody does.
Also, do not start worrying that your children will have it. Everything that I read says that they don't know yet if it is inherited. So, scratch this worry off of your list right now.
Whatever neurosurgeon you call, ask the desk if he is familiar with chiari before making an appointment.
Posted by LisaK (Member # 41384) on :
I have 2 places I am getting another opinion from - one in NY and one in north caroolina.
TF, maryland would be closer for me if you could message me their name?
oh, I will message you as you said. thanks.
Posted by desertwind (Member # 25256) on :
I have Chiari Malformation and have had 2 brain surgeries. Of course I also have Lyme and multiple co-infections.
If you would like more information pm me. DW.
Posted by dbpei (Member # 33574) on :
My daughter has chiari malformation. Her symptoms were daily head aches when she was diagnosed many years ago after a neurologist ordered an MRI. She does not have a severe form, so surgery was not recommended for her. Somehow, over the years, her head aches have decreased in frequency, and she is leading a normal life, running miles daily now.
Good luck, Lisa. You are getting some good information here. Please keep us posted.
Posted by HW88 (Member # 48309) on :
I have a good friend that had/has it. She was in a lot of pain and ability to think was severely decreased. She recently had surgery and is doing much better. I could try and get you connected with her if you want. I'm sure she would love to talk to you about it... she likes to talk to everyone about it!
Good luck.
Posted by LisaK (Member # 41384) on :
thanks everyone!
I have PMd some of you about this.
HW, YES PLEASE, can you connect us? I will pm you now thanks!
anyone else out there????
Posted by dbpei (Member # 33574) on :
Lisa, I tried to reply to your last PM and was told your mailbox is full!
Posted by TF (Member # 14183) on :
LisaK, your mailbox is full, hon.
Posted by LisaK (Member # 41384) on :
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