Hello everyone. I have joined this support group in search of accurate information about CM. I myself do not have the condition, but my partner does. It breaks my heart to watch her go through it without being able to do something. I would greatly appreciate any advice and info on what I can do to provide more than just mental support for her. Thank you everyone.
its very thoughtful of you to be looking into chiari to support her, what information exactly are you seeking
the best advice i can give you that my husband done for me is BE THERE, Do not judge, accept her for who she and what she going through even though you will not understand everything/most especially the pain and her emotions, the most important thing you can do for her is BE THERE for her!!
oh and one thing my husband did that i wasnt aware of til much later, was kept a journal of daily events no major length unless it was something inparticular-- after all i went through it proved to be helpful in my recovery..
Thank you Lisa. I am there for her as much as I can be. I am seeking any information you may think is useful. I just want to understand.
Camilla,
Great advice from Lisa and Beeba. The best thing my husband does for me is he helps advocate for me. He comes to most all my appointments and asks questions pushes doctors for tests and medication and just backs me up. Many times Chiari makes your brain foggy and we can't remenber as much as we want to. Someone with a clear mind and kind motives is always helpfull. Be patient and believe her when she tells you what she's going through. Someone that loves and cares is priceless when you are going through something like Chiari.
Wendy
Hi Camilla...my journey is just beginning and I am in the run-the-tests stage. I have seen the neurosurgeon's nurse, have had my brain MRI, and have the order for my thoracic and cervical MRIs. Once I see the NS with these results, he will let me know if I need a CINE MRI. So, I am not an expert by any means :-)
I agree with Lisa. I know for me, just someone believing me and validating how I feel and my symptoms has been very important. like with Fibro or CFS, I look "fine", and feel anything but fine. My fatigue has gone crazy, I am beginning to stumble and flat out don't feel like "me." My partner has been helpful, carries stuff if need be, and sits with me while I cry. I have had a hard time admitting I am tired, or need help... and knowing that it is ok, and that I am not judged as a hypochondriac has made all of this more bearable.
Has your partner been diagnosed? How bad have her symptoms gotten so far? How long is her herniation? Does she have a doctor that is listening to her? I have found so much information just googling "Chiari Malformation."
Just "be there" for her ~ :-)
Thank you everyone who has replied. I’m doing my best each day to at least mentally be supportive since physically I can’t relate. I never ever miss an appointment either. Thank you again. I will be sure to look at all the suggestions