Can you help me understand Chiari better?

[brotherWithQuestions]

I recently found out my sister has Chiari Malformation 1. She was diagnosed after being admitted to various hospitals for collapsing and they did an MRI. I say various hospitals as we are based in Dublin, Ireland and when you are taken in by ambulance they take you to the A&E that is on call for that time. So she has been to 3 hospitals in the last few months. She is taking the diagnosis pretty badly and at the moment is refusing to acknowledge it is a problem. So I am trying to understand what is happening and the chiari malformation in general, so that when she is ready to deal with it I can help as much as possible.

I have only found out about the chiari in the last few days and I've been on various websites, mostly the csfinfo.org site, watching videos and reading up on the condition. But I have many questions and I thought that maybe people here might be willing and able to help me understand.

Maybe this is an odd question, but how widely studied are chiari in the medical profession? For example my sister was released from hospital on her last admission for being drunk. She went to lunch outside the hospital and came back 2 hours later and the hospital staff were convinced she was drunk. Despite her insisting she only had mcdonalds. But they didn't believe her. She refused to let them do a blood test which didnt help but the end result was that they sent her home. When she arrived home she had poor balance, poor arm and leg control, found it difficult to hold stuff. Numbness in her feet and couldn't stand any lights on. We had to turn off all the lights in the room she was in and use torches. But right infront of me she came back to normal in about 10 mins, was turning the lights on and making sandwiches as if nothing was wrong. From my limited research by this point I was convinced she was experiencing symptoms of the chiara. Can they come and go this quickly?
About 30-40 mins later she did start to stumble again and couldn't look up with the light on.

other symptoms she is showing are, blackouts, collapsing, troubling sleeping, neck pain and headaches, sensitivity to light and bladder control issues. We are trying to help in ways that she might not openly associate with the chiara, like getting her a new softer pillow, some people suggested this for sleeping. Is there anything else you think might help that we could do?

One symptom that she has is changing breath smell but I havent found any reference to it on any chiari research. Do you think this could be related?

Is there anything you think can trigger a worsening of her symptoms, like stress or food or alcohol or anything?

I know this might be an odd request, a brother posting here asking about how to help a sister but if there is anything you think would help please let me know.

[selmaS]

  At the moment I am not aware of any member in other areas of Ireland, but my friend in Cork may be able to help you with that......I will ask him to pop on and see what info he can offer.

[brotherWithQuestions]

Thanks Selma, that would be great.

[KerriC1]

I too want to say what a wonderful brother you are to seek info on your sisters behalf. She is very lucky to have you in her life.

For me I went through a few phases after I was diagnosed. Shock, sad, fear, and then the learning and acceptance stage. It's a lot to take in and it can be very frightening. I know I was but I was also dealing with symptoms for 15 years so part of me had some relief of finally having an answer. Although it wasn't the answer I wanted

This is where I found myself. And it changed my life. I feel at home here among others who understand what it's like. All the reading in the world doesn't take the place of real people with real symptoms that you can relate with and and not feel so alone.

Maybe you should have your sister read some posts on the forum so if she had any questions we can help her as much as possible.

Good luck

[brotherWithQuestions]

Thank you for your kind words Kerri, its difficult to help her through how she is feeling and processing everything, but I can at least do this part. And I have kinda become the family's unofficial chiari researcher.

I do think that somewhere like here will help her and when she is ready I do plan on giving her some links to posts here to read. it may sound trivial but even the conversation about the surgery hairstyles will help her. When she heard the word surgery from the doctor she instantly went to all her hair being shaved and finding that is not the case i think will help somewhat.

and thank you for your suppport.

[selmaS]

  Hi and welcome to the Chiari forum,

First I want to thank you on your sister'e behave for researching this info...not everyone has someone that is willing to understand this condition as many Drs even dismiss us and our symptoms.

Chiari symptoms do cycle and yes they can come and go....generally not as fast as you mentioned but we are all different and it could indicate some sort of constriction of the spinal cord that is released and then compressed possibly with her movements or activity

The breath issues could be related to GI issues which many of us do have.....GERD and reflux, post nasal drip....

May I ask what part of Ireland are you in?.We do have a member in Cork Co....

[brotherWithQuestions]

Hi Selma
Thanks you for getting back to me, I really appreciate it.

I'm actually based in Kilkenny, a couple of hours outside of Dublin. My sister lives in Dublin.
You mentioned the member in cork, do you have many members around Ireland?