Quote:
Originally Posted by molly123
Hi,
Thank you for the reply! It's funny you mention the hypermobile joints because I have actually been told I have that. I've been looking the Chiari Malformation information up and I definitely have more than a few other symptoms. I get extremely painful pains in my left cheek (went to an ENT for a year trying to figure out what the problem was to no avail), I have had vision disturbances, and I've been to a neurologist due to headaches (again, no solution. In fact I was told to read a book about headaches and stop chewing gum!). I'm in Massachusetts, but I really appreciate your willingness to offer a recommendation! I'll get headaches that completely put me out of commission for the night, and weakness in my hands along with tingling and numbness. I'm just not sure if my symptoms are enough to get treatment? I've also been brushed off for the past 5 years by my doctors I feel like they think I'm just annoying! I have an appointment on Friday to review the MRI, so hopefully I will get some answers! Thank you again for your reply! What is happening
With your best friend?
Thanks, molly
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Hi Molly,
It is so hard when you don't know what is going on and the symptoms don't lighten up!! My heart goes out to you.
I am not surprised at all that you have been told you have hypermobile joints. Have you ever heard of or looked into Ehlers-Danlos syndrome (EDS)? I would look into it and then schedule an appt with a reputable Neurosurgeon and Rheumatologist to find out for sure if you have both issues and then they can work toward a resolution. My friend ended up having surgery with a fantastic Neurosurgeon here in Seattle - if you want her info let me know and I will PM it to you.
She is doing great now and most symptoms of the Chiari are gone. EDS is something she will always live with but she is figuring that out. Her daughter also has it so be mindful if you have little ones as it can be hereditary.
Good luck and reach out anytime,
Tessa