Finding a knowledgeable, experienced doctor to help you manage your Chiari is vitally important. I have already written this at the end of my personal story, but it bears repeating: Never blindly trust a doctor to tell you what is best for you. Educate yourself. Research your treatment options... Don’t be someone’s guinea pig. Don’t be afraid to ask lots and lots of questions. If you don’t like the answers, keep looking. It will be worth it. YOU are worth it.
I would start by reading Rick Labuda's excellent article, "Finding A Doctor, You Have To Do The Work..." on ConquerChiari.org.
Next, you can review lists of doctors compiled by Chiari associations:
Christopher Burton's Syringomyelia Foundation has a long list of doctors on their website. It is a PDF file, so it should be easy to print out.
WACMA (The World Arnold-Chiari Malformation Association) has a member compiled list of doctors on their website. An asterisk alongside a doctors listing means they have been recommended by either their peers, many patients, or are known to have expertise in the field of Chiari Malformations. WACMA also has a list of things to discuss with your doctor before surgery.
CCI (Chiari Connection International) has a map showing the location of doctors recommended by its members. When you click on the map, the doctor's name and contact information will pop up. Some listings include contact information of a person who has had recent experience with that particular doctor. You can email that person to ask about their experience, which may be positive or negative. The list of the names is also available HERE. An asterisk by the name indicates a doctor that has been recommended by group members or has expertise in the Chiari field.
About Me
- Christine from WI
- United States
- I used work as a graphic designer full-time plus sell digital scrapbook kits on the side. All of that came to a halt when I was diagnosed with a rare neurological condition called a Chiari Malformation. I've had three surgeries so far that have only made my symptoms worse. To try and make a long story short, I'm no longer able to work and now use the limited time I'm able to spend on the computer to digital scrapbook and maintain my blogs. I feel blessed that I am able to do this because it helps me focus on what is important in my life. Some days I think it's what helps me keep my sanity! Thank you for visiting my blog. I would love to hear from you! Please feel free to leave your comments or questions here on my blog or you can write to me at cmschultz0001@hotmail.com
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17 comments:
I loved your lettter to my brain and posted it on my blog, if you mind please let me know? It was so awesome, I admire how you can put into words your feelings and the poems you write you should publish, thanks for helping me to understand my brain and even though my surgery was in 2001 I had another invasive procedure done in 2007 that left me housebound , and I am so angry and depressed I spend my time blogging,I was a myspacer ,still I am , but it was to social and not supportive. So thanks, and can a I follow you? and add you to my page.Let me know and thank you again
I wish I could take credit for "A Letter From Your Brain", but its actually copywrighted by Stephanie St. Claire. Thank you for adding my blog to your page. I'll be visiting yours just as soon as I'm done typing this. :^)
I'd just like to say thank you for all your doing for us chiarians!
I had my first "migraine" when I was 39....in reading about Chiari I understand that symptoms typically manifests itself in the third or fourth decade...If it hadn't been for imitrex or frova all these years, I'm 63, I'd be an invalid. I recently had an MRI and have been told I have Chiari. How odd I never knew this before. I thought it was all hormonal. I also thought that maybe if I had surgery which my Dr has not suggested, that maybe I could get off the Topomax and other drugs I am now on. I still have my migraines btw. I wish I knew what the answer was. What about lifespan? Does anyone know if it shortens your lifespan? I heard somewhere about sudden death??? I am knew to this so I will take some time to read everything here. I am so glad to find this blog btw. thanks for all your help.
Thank you for writing! I have responded to you privately, but also wanted to post that I've been trying to find out what the experts have to say about lifespan and sudden death. As with all topics concerning Chiari, there seem to be no simple answers. The best article I have found so far is called "The Extremes of Chiari Outcomes" by Rick Labuda and can be found on conquerchiari.org
The direct link is: http://www.conquerchiari.org/subs%20only/Volume%207/Issue%207(1)/Message%20From%20The%20Editor%207(1).asp
I will continue the search! Thank you again for taking the time to write. I appreciate your input! Take care! Christine :^)
Thanks Christine. I haven't been online for awhile at least on to this site. You said you responded privately but I can't fine out where. To my email...google? comcast? I can't find anything anywhere? Anyway I will look up the Labuda article. Thanks so much.
Karen
Hi Christine!
God Bless You! I put this Grateful Blog together so we chiarians would be able to thank Dr. Milhorat and Dr. B for their remarkable and unrelenting quest to help us with a disease that has been unrecognized by most medical practitioners. Could you please be an author on the blog. Christine, you are a blessing to all of us who continue to suffer.
If you accept being an author, please send your email address to lc@lindacovert.com.
Blessings to you,
Linda
Hi, I wonder if anyone can guide me to finding a doctor to diagnose whether or not the problems I am experiencing are from chiari. The more I look into it the more I really think that is what's wrong. I have had an MRI but no one has looked at it that knows anything about chiari.
I'd just like to say thank you for all your doing for us chiarians!
Joceyln,
Meet with a well respected neurosurgeon in your nearest big city and see if they have experience with it. If not then ask if they can refer you to a neurosurgeon that has experience with doing Chiari 1 Malformation surgeries.
thanks you. If anyone need to share their experience then you can go to
http://www.chiarisupport.org
Hi
I am really scared I have Chiari type 1 size is 2.8 I cant sleep when I stand up I feel better, What is going. does anyone know if I sleep sitting up will get the headaches. My chiari problem didnt get really bad till I quit drinking coffee. The coffee wore my body down and severe
dehydration can some one answer me back I am really scared. doctors are saying I am just depressed and want to put me on Zoloft I have had 2 MRI one of them was .3 MRI w/contrast to confirm but Nerologest told me dont worry.
Is this a dead blog. no one answers?
Hello, I am sharing the success of my 16 year old sons 45 minute Chiari surgery performed on 01/17/2012 in Barcelona Spain by Dr. Royo at the Institut Chiari De Barcelona. He was ALMOST symptom free immediately after the surgery and was playing XBox and eating smuggled in pizza and ice cream within a couple of hours after surgery. We have been sightseeing every day since and yes he was sore but up and walking through the beautiful city. We are from Florida but wanted to post on these sites to offer a possible alternative to the traditional surgery. He regained most of his reflexes, his eye quit twitching, his shoulders relaxed, his grip strength increased over 30%, he gained back the sensitivity on the left side of his body and he has not complained once about a headache. He has had a chronic headache for just over a year. It truly was amazing. I have pics before surgery, a couple of hours after surgery and sightseeing every day since. Tomorrow is the zoo.
I have a 16 year old daughter who was involved in 3 head injurys within 3 weeks during basketball game. After the 3rd and worse knock to the head we were seen by a wonderful doctor at a local college sports injury clinic. An ImPACT test was done and she was told she had a few concussions. She has major headaches and has problems with concentration & confusion. Lights, sound & smells effect her. Some of her Impact test scores are improving, but others were not. We have taken her to see a Neuropsychiatry doctor who said she has post concussion syndrom. Test included MRI Brian W and WO Gad. This was when they told us she has a Type 1 Chiari Malformation and that this was nothing that should worry us. We call the doctor who we saw a the sports med. clinic and he sent the MRI to a Neurosurgeon he spoke highly of from another hospital 3 hours away from our area. This doctor just returned from vacation and has informed us we need to see him this Saturday because our daughter needs surgery. Still kind of concerned that this comment was made even before he has seen my daughter. Have lots of questions. She had no symptoms before the concussion. Very healthy and active teen age girl. Now I'm looking everywhere for info. and even more scared. HELP!!!!
Hello. I had a very similar situation with my daughter when she was 14 (she's 19 now). She was a cheerleader and her flyer fell on my daughters head which resulted in a chuari. She had major headaches and was passing out. She had decompression surgery on 12/24/2009. I felt like i was living a nightmare trying to get her help and it seemed like i was running into road blocks. She doesn't get the headaches as severe as they were before surgery but they are starting to come more frequent. If you have any questions please email me at sgoessman@lusd9.com
Take care,
Sheree
so good to find a blog that reassures me that I'm not alone! Keep up the good work.
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