Chiari Experts

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.

You may also find help in Barbara Kane's article, "What questions do I ask when I am deciding on a CM/SM physician?" on ASAP's website. (American Syringomyelia Alliance Project)

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.

Online Support Groups

There are many online support groups and forums for people with Chiari. If you go to the Yahoo Groups Home Page and search for "Chiari" you will find over 160 groups you can join. Once you register, you will be able to read all the member's messages and post your own questions and comments. You can post your messages for the entire group to read, or email members individually for more privacy.

The Yahoo support groups I find most helpful are hosted by WACMA (the World Arnold-Chiari Malformation Association) and CCI (Chiari Connection International). WACMA currently has over 7000 members and CCI has over 1200. Both groups have moderators who strive to keep posted messages on topic. They also try to work with doctors to help answer some of the more difficult questions members may have.

Another source of information and support can be found in the ASAP forums. (American Syringomyelia Alliance Project). Subjects that you can read about and discuss there include "All about Chiari, Syringomyelia and Related Disorders", "Pediatrics" , "Disability Insurance Issues" and more.

ASAP is also starting a new virtual support group as part of their ASAP Outreach Program. Virtual support groups meet monthly by telephone to discuss common issues and share experiences with one another. They are facilitated by ASAP staff and volunteers, and groups are limited to eight to ten members. If you're interested in participating in one of these groups beginning in fall 2008, please send an email to Ellie McCallum.

Column of Hope, a Chiari and Syringomyelia Research Foundation, also has an online forum you can participate in. Their topics include Peer Support, Research, News, Treatment & Remedies as well as an off-topic area where you can share a joke, chat or just vent.

Healing Friends is a Christian forum where people with Chiari and related disorders can share how they deal with their disorders, challenges, struggles and victories. There is discussion about medical issues, an area for your prayer requests, plus an off-topic area called "The Park Bench" where you can just relax and talk about something else for a change.

There is one thing I have noticed that I would like to bring to your attention. I have found that the majority of online messages are posted by people who are having problems. I suppose that may seem like a dumb thing to point out... I mean after all, it is a support group! But some days I find reading that reading all the emails can make me feel a little depressed. Not exactly the support I was looking for! So I always try to keep in mind that the people who are doing really well don't post to the groups because they just don't have the need - they have simply moved on.

Area Support Groups

Here is a list of Chiari Support Groups I have found by researching the Internet. Please email me if you would like to add to this list or would like to change any of the information here. cmschultz@new.rr.com

Alabama
Pam Holmes
112 James St
Ozark AL 36360
334-445-0760
pamjh@charter.net

Arizona
Arizona Syringo Chiari Care & Support Group
Founded by Judy Dragiewicz & Shelley Norris ~ Meeting Since 1998
Meets the 3rd Thursday of every quarter from 11:00-1:00 at St. Joseph’s Outpatient Rehab Center, 114 W. Thomas Rd., Phoenix. "Welcome! We offer care, friendship and support by touching the lives of everyone affected by SM/CM and related disorders. Our quarterly meeting includes time to visit and share before a planned speaker. Please join us and share your thoughts, concerns & questions. For additional information email us at azsyringochiari@cox.net or call Debbie (623) 561-6906, Dianna (602) 973-4508."

Chiari and Syringomyelia Network
4231 N. Winfield Scott Plaza #7
Scottsdale AZ 85251
http://www.chiarisn.org/
Monthly support meetings are held on one Saturday per month at Mesa/Scottsdale AZ locations. For more information, please call toll free (866) 661-7607 or (480) 350-7177, or email csinfo@chiarisn.org

California
Lisa Yates
9411 Ottomon Way
Orangevale CA 95662
916-214-3839
destinyclergyservices@yahoo.com

Georgia
The Southeast CM/SM Support Group
Columbus, Georgia
Pam Holmes
Pamjh@charter.net

Illinois
Chicagoland Chiari Support
First United Methodist Church
1903 E. Euclid Ave.
Arlington Heights, IL 60004
Carolyn Richardson
Carolyn.J.Richardson@gmail.com

Indiana
Northwest Indiana Support Group
Meetings will be held the first Monday of the month at 7pm. The group is for those who suffer with Chiari Malformation and related disorders and for those who care for them. For more information, please contact Nancy: nancybyn@yahoo.com

Iowa
Sheryl Andre
1714 Douglas Ave
Ames IA 50010
515-233-4292
sandre25@mchsi.com

Kansas
Jayne Link
2825 Lower McDowell Creek Rd
Manhattan KS 66502
785-776-5392
fsharp@prodigy.net

Kentucky
Jean Kinsey
307 Hodges Lane
Brooks KY 40109
502-955-6417
mjkinsey@alltel.net

Maryland
Nancy Young
1581 Charleston Dr Ct L
Edgewood MD 21040
410-538-4521

Michigan
Upper Michigan Chiari Malformation Support Group
Meets the second Monday of each month from 7-9 p.m. at the Dickinson County Memorial Hospital, 1721 S. Stephenson Ave., Iron Mountain MI. For more information, please contact Becky Harms at: mbdaharms@norwaymi.com

Cindy Dellamater
10299 Oak Rd
Otisville MI 48463
810-631-6775
Hogan810@cs.com

Missouri
Paul Bales
4315 Ellenwood
St Louis MO 63116
314-351-3122
PBSLMO@hotmail.com

Sheila Rainey
23729 Highway 98
Boonville MO 65233

New Jersey
The South Jersey Chiari Awareness Initiative/Support Group
Meetings are held every 2nd Wednesday of the month. For more information, contact: Christine Marchesano at mailto:Chiari@marchesano.%20org or call 609-812-0515.

New Mexico
Chiari People of New Mexico
1050 South Bosque Loop
Bosque Farms, NM 87068
505-489-4696
Joleen Baughman
bjtlbaughman@aol.com

New York
Oneida County Area
Margaret (Peg) Curtacci
9029 E Boak Rd
Holland Patent NY 13354
315-865-7498
pegcurtacci@excite.com

Northeast Chiari Friends
Meets in: Kingston, NY, East Greenbush/Albany, NY, Pittsfield, MA, and Canaan, CT. For more information, please contact: churchill@fairpoint.net or northeastchiarisupport@hotmail.com

Ohio
Ray D'Alonzo
8700 Mason-Montgomery Rd
Mason OH 45040
513-622-1977
dalonzo.rp@pg.com

Karen McCann
1365 Bellefontaine Ave
Marion OH 43302-7011
740-383-4363
klmpsm@aol.com

Ohio Parents with Children with CM/SM Support Group
217 Erie Street
So. Amherst OH 44001
440-986-2040
Sherri Ketchesin
ketch16@yahoo.com

Oregon
Aaron John
Portland OR 97201
Email: ajfabb-groups@yahoo.com
web site http://smnw.selfip.org/

Pennsylvania
Chiari & Syringomyelia Support of the Greater Lehigh Valley
We meet at the Banko Bldg., Lehigh Valley Hospital/Muhlenberg campus in Bethlehem, PA on the first Sunday of every month, 2:00 - 4:00 p.m. For more information, please contact: Denise Siegfried, greythndz@yahoo.com, (610) 838-9768

Marilyn Kilbourn
108 Moyallen St
Wilkes Barre PA 18702
570-675-1835


The Children's Clinic of Wyomissing
Wyomissing, PA 19610
mruth@chiaripeopleofpa.com
Renee Tobias and Melissa Ruth
610-413-3259

Tennessee
Stephanie White
820 Roy Donegan Rd
Dickson TN 37055
615-740-0202

Texas
Susie Brasseal
133 Rio Azul
Sequin TX 78155
830-560-1145
sbrasseal@aol.com
or Texas4ASAP@aol.com

Washington
Syringomyelia Northwest Support Group
Edmonds, WA
Michele McGraw
michelelm@verizon.net
425-742-0982

Wisconsin
Green Bay Area Support Group
920-497-2959
Christine Schultz
cmschultz@new.rr.com

Ryea Burns
Wisconsin support group meetings on the first Saturday of every month from 2-4 at the Watertown Memorial Hospital, Conference Room 125, Hospital Drive, Watertown, WI.
She is also working on coordinating meetings for people in the Madison area. Please contact Ryea if you are interested or need more information: ceilingtofloorandmore@yahoo.com

Coping and Assistance

Wishes and Rainbows
Wishes and Rainbows is a non-profit organization devoted to helping those with ACM, SM and other chronic conditions. They assist those in need with medical costs, travel and personal expenses, projects and programs designed to get information to those without computer access and scholastic programs for in-home tutoring or schooling.

The Invisible Disabilities Advocate
"Do your loved ones have a hard time understanding how your symptoms such as extreme fatigue, pain, dizziness and cognitive impairments can be debilitating? The Invisible Disabilities Advocate strives to help friends and family better understand chronic illness and pain, as well as learn how to be a source of encouragement and support." They offer articles, booklets, pamphlets, links, an online support group, a discount book store, t-shirts and more.

But You Don't Look Sick
This website is about living life to the fullest with any disability, invisible disease, or chronic pain. Be sure to to read Christine Miserandino's amazing analogy of what it is like to live with sickness or disability: The Spoon Theory

A Guide to Handling Disputes with Your Employer or Private Health Plan
Help with understanding what kind of insurance coverage you have and how to handle complaints and appeals by the The Kaiser Family Foundation and the Consumers Union.

The Family and Medical Leave Act (FMLA)
An overview of FMLA by the US Dept. of Labor

Benefits For People With Disabilities
If you need information about Social Security and Supplemental Security Income disability programs, a good place to start would be the article Applying for Social Security Disability on Chronic Pain Connections Website.

You can find information from the US Government about Social Security Disability Insurance - which pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes and Supplemental Security Income - which pays benefits based on financial need by clicking on the underlined words above.

Chiari Connection International (CCI) has some good disability hints on their website along with copies of the forms they use for Residual Function Capacity Assesment.

More help can be found at the website Disability Secrets. This site helps answer questions about how the disability process really works, from the perspective of a former disability claims examiner. It focuses on the disability evaluation process including applications, denials, appeals, and awards.

Rx Assist
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford their medicine. RxAssist offers a comprehensive database of these programs, as well as practical tools, news, and articles for health care professionals and patients.

NeedyMeds.com
All the information on pharmaceutical patient assistance programs, plus hundreds of other programs, is available here for free. For more information about NeedyMeds.com, please see the comments left by Rich Sagall MD, at the end of this posting.

Travel Assistance

You may need to travel in order to see a Chiari specialist. If this is not financially possible, these organizations may be helpful:

Travel Assistance
National Patient Travel Center
After an initial screening of patient need and determination of a suitable means of travel, callers are referred to the most appropriate charitable medical air transportation program that can best meet their needs. (800) 296-1217

Air Charity Network
To locate the Air Charity Network organization that serves your area, call (877) 621-7177

Angel Flight
To arrange transportation contact the Angel Flight office to obtain required documents necessary for qualification:
angel@angelflight.com
(918) 749-8992
Fax (918) 745-0879

Angel Flight NE
To request a flight, contact the mission coordination office:
angelflight@angelflightne.org
(800) 549-9980
(978) 794-6868

Mercy Medical Airlift
To request assistance, call the National Patient Transport Helpline at (800) 296-1217 or email: info@mercymedicalairlift.org

You can also contact Becky Harms to ask for assistance with flights to The Chiari Institute:

mbdaharms@norwaymi.com

(906) 282-7284 Cell Phone

(906) 828-9587 Home Phone

Miracle Flights for Kids
If you or a loved one needs help with the cost of air transportation to treatment call (800) FLY-1711.

Lodging Assistance
NAHHH
(800) 542-9730
helpinghomes@nahhh.org
The National Association of Hospital Hospitality Houses, Inc. is a non-profit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies.

You can also try searching the Internet using the words "hospitality housing" or "hospitality house", plus the name of the city or state you are planning to travel to. Or call ahead and ask your doctor's office or hospital to recommend a hotel that may provide a discounted rate for you.

Housing specifically for The Chiari Institute:

The Variety House (sorry, there is no website)
489 Community Drive, Manhasset
The Variety House is a housing facility for patients of The Chiari Institute who are in financial need. It is located across the street from the North Shore LIJ Hospital and costs $25.00 a night. You must apply by contacting your medical secretary at TCI. Once your referral is faxed on your behalf to the Variety House, patients are instructed to contact Sharon Devito one week prior to their planned arrival date to verify room availability. Because it is a small facility provided to patients on an urgent, as need basis, there can never be a guarantee of housing. You must have alternate arrangements in case of limited availability. Only two persons per family may stay at a time. Also you must be 18 years of age.


Ronald McDonald House of Long Island
267-07 76th Avenue, New Hyde Park, NY 11040
(516) 775-5683 or (718) 343-5683
The Ronald McDonald House is available for pediatric patients with the same needs as The Variety House. Please contact your medical secretary at TCI who will submit a referral on your behalf. You will need to contact the RMH 2-3 days before your trip to verify if a room is available.

More Free Resources

Songs of Love Foundation
Songs of Love is a non-profit organization dedicated to providing personalized songs for children and teens facing tough medical, physical or emotional challenges - free of charge!

Caring Bridge
CaringBridge provides free, personalized websites to help keep your loved ones informed during your illness, treatment and recovery. In return, family and friends can show their support by leaving messages in your guestbook. Your website includes a patient care journal, guestbook, photo gallery and free online support.

Free Digital Scrapbook Kit
Are there any digital scrapbookers out there? (Creating scrapbook layouts on the computer.) I am completely addicted to it myself! I have a second blog where I post my finished layouts and give away scrapbook kits I've created. My latest kit is named "Chiari" and features the color purple. You can find it here: One of a Kind Design Studio Blog

Printable Information

Do you need printable information about Chiari to share with family and friends? Here are some good links to free downloadable books and documents:

Chiari Malformation and Syringomyelia - A Handbook for Patients and Their Families
This handbook, provided by CSF (Chiari & Syringomyelia Foundation is written by medical specialists and it is edited by Ulrich Batzdorf, MD, Professor of Neurosurgery and Director of Spine Surgery David Geffen School of Medicine at UCLA.

Chiari I Overview
This 5-page document from the Mayfield Clinic & Spine Institute includes an excellent description of decompression surgery with drawings and MRI pictures.

Chiari & Syringomyelia 101
A 7-page paper by Dr. John Oro covering Chiari symptoms, diagnoses and treatment options. You can also receive a free packet of information in the mail from the ASAP (American Syringomyelia Alliance Project) if you fill out the form found here.

Chiari Connection International Brochures and Handouts
This excellent website offers Patient Education Sheets and a Tri-Fold Brochure.

Chiari People Resource Library
Here you can find PDF documents on a variety of of subjects concerning Chiarians from "Is it Genetic?" to "Hormone Replacement".

Chiari Malformation and Syringomyelia Residual Functional Capacity Questionnaire
This form, which may be helpful when applying for Social Security disability, is available on Chiari Connection International's website. Have your doctor(s) fill it out for you. (Click HERE to go directly to the form.)

Factsheet for Doctors
A fact sheet to give to your doctor to help raise awareness about Chiari.

The Spoon Theory from But You Dont Look Sick.com
A printable version of this must-read story by Christine Miserandino.