Looking for a Support Chiari Walk in the Los Angeles area?

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Looking for a Support Chiari Walk in the Los Angeles area?

Postby donberg » Mon Jan 24, 2011 1:19 pm

I am looking for a Conquer Chiari Walk in the Los Angeles area I have seen Conquer Chiari Walks pretty much thru all of the States except for my area especially living in such a large community you would think I would be able to contact someone who would be able to help. I am not one for creating or organizing a walk myself, Although I have contacted a couple of Chiarians to try and set up a walk in September!! I just wanted to ask if maybe someone knew of someone who could help me?

I have had Chiari since July of 1996 with 3 brain surgeries and a total of 15 surgeries that are unrelated. Seems like everytime I have surgery the symptoms get more complicated.. I have now for the past year been seeing a pain management specialist. Which has helped I had a Neuro-stimulator inserted in my spine last July seems to be working well for the pain in my lower back. With occasional Nerve Block Shots in my neck and the back of my head for shooting pains and 24/7 headaches that can be extremely painful. Unfortunately, the shots are only temporary so tomorrow I am having a procedure called RFA or Radio-Frequency Ablation to obstruct the nerve in my neck that's creating the pain. I was told the RFA can last for maybe 9 months.

Anyway, Im just glad to find a support group where we can all express our feelings and know that the people here are experiencing and understand exactly what we are all going thru even if the symptoms are different. I'm looking forward to talking to you... There is more to life than Chiari I find the best in all that I experience.

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Re: Looking for a Support Chiari Walk in the Los Angeles area?

Postby razzle » Mon Jan 24, 2011 1:22 pm

Once you choose hope, anything's possible.

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Re: Looking for a Support Chiari Walk in the Los Angeles area?

Postby aspen13 » Mon Jan 24, 2011 4:26 pm

If you are able to put together a walk in Los Angeles I would love to come, I am in San Diego. I have talked to four people in Souther Cali with Chiari. I just met the daughter of someone with Chiari as well. So I know we could get support.

Actually, this person was telling me her mom has to have her 2nd surgery and doesn't have medical insurance. She was doing okay until she fell at work and went to the doctors where they did a stress test and made her much worse. She is going to Texas for the operation.
CM DXed in 2004 - 9.3 MM herniation
Pineal Gland Cyst DXed in 2008 - 11 MM
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