Christine's Chiari Blog

Chiari Experts

2009-03-31T12:57:00.000-07:00

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.

Online Support Groups

2009-03-12T18:50:00.000-07:00

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.

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

2009-03-03T18:28:00.000-08:00

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

Fundraising Sites

2009-03-02T08:16:00.000-08:00

Here is a list of organizations that raise money to help specifically with Chiari related causes.

CSF - Chiari & Syringomyelia Foundation
CSF hosts educational and fundraising events throught the country. Click here for a listing of their upcoming events as well as past event recaps.

Baylie for Brains
Baylie is a little girl on a mission to raise a million dollars for Chiari research. She has already made over $144,000.00 selling bracelets, T-shirts and car ribbons.

Whitney's Chiari Awareness Bracelets
All the proceeds from the sale of 9-year-old Whitney's purple bracelets will be sent to The University of Chicago Pediatric Neurosurgical Research and Educational Fund.

Help Holly Find a Cure
Holly's goal is to raise $20,000 before she graduates high school. All proceeds from her bracelet sales and other fundraisers are donated to the American Syringomyelia Alliance Project, Inc. to the Kids For A Cure Medical Research Fund.

A Healthy Touch - Shelby's Art
Artist Shelly (8) and her sister Amber (10) both have Chiari. Amber writes, "We are raising money so scientists and doctors can find Chiari in all their patients and so they can find a cure so people won't have to have surgery like I did. "

Miracle Wish For Chiari
The goal of Miracle Wish is to provide a camp for children with rare diseases. This organization was started by a family inspired by the Japanese legend that if you make 1000 paper cranes, you get a miracle wish.

Raise Money while you Shop or Search Online
Here is a great way to raise money for ASAP (American Syringomyelia Alliance Project), every time you shop online or search online: Check out: iGive.com and iSearchiGive.com.

You can use iGive.com to raise money for ASAP every time you shop online at any of their 737 participating stores. If you make a purchase through iGive within 45 days of joining, they'll donate an extra $5.00. And when you search the web through iSearchiGive.com, you raise a penny or more for ASAP every time.

HOW IT WORKS:
1. Join iGive.com to support ASAP. It's free, safe, and easy to join. Here is the link to join: http://www.iGive.com/welcome/warmwelcome.cfm?c=7789&m=592081

2. Don't feel like registering yet? Take iSearchiGive.com out for a spin and raise a penny per search. Just visit iSearchiGive.com and type "American Syringomyelia Alliance Project, Inc." in the "Select Your Cause" area.

The iGive Mall features over 700 trusted online retailers. You'll never pay more when you reach these stores through iGive.com. And if you take advantage of the coupons and free shipping deals that they post, you might even save a few bucks! Up to 26% of each purchase through iGive benefits ASAP!

You can also order Magazine Subscriptions online and 40% goes to ASAP! Click HERE to see the large selection of magazines available.

_________________________________________________________

Fundraiser Idea s Blog
My thanks to Luke, who contacted me about his blog with tons of fundraising ideas and fundraiser information. They generally post a new fundraising idea every Monday through Thursday. The posts cover easy fundraising ideas, creative fundraising ideas, school fundraising ideas and more.

Coping and Assistance

2009-02-14T09:18:00.000-08:00

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

2009-02-07T15:09:00.000-08:00

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

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
489 Community Drive, Manhasset, NY 11030

(516) 562-4155
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

2009-02-01T10:34:00.000-08:00

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. One of my kits is named "Chiari" and features the color purple. You can find it here: One of a Kind Design Studio Blog

Printable Information

2009-01-22T20:02:00.000-08:00

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 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.

Chiari Books

2009-01-14T09:48:00.000-08:00

Personal Stories:

Contents under Pressure: One Man's Triumph Over Chiari Syndrome
by Raphael D'Alonzo All proceeds from the sale of this book are donated to Conquer Chiari. (available at lulu.com)

The Angel Within Me: My Journey From Struggle to Triumph
by Rachelle Briant (available at wacma.com)

Short of a Miracle: One Woman's Journey Through Chronic Fatigue Syndrome Fibromyalgia Chiari Malformation
by Nelma Jean Bryson

Informational Guides:

Conquer Chiari: A Patient's Guide To The Chiari Malformation
by Rick Labuda - I personally recommend this excellent book!

The Chiari Book: A Guide for Patients, Families, and Health Care Providers
by John J Oro & Diane Mueller

Chiari & Syringomyelia: A Handbook for Patients & Families
by Dr. Ulrich Batzdorf (available at lulu.com)

Arnold-Chiari Malformation - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
by James N. Parker

The Official Parent's Sourcebook on Chiari Malformation: Updated Directory for the Internet Age
by Icon Health Publications

Syringomyelia and The Chiari Malformation
by John Anson, Issam A. Awad & Edward C. Renzel

Unless otherwise noted, you should be able to find all of these books at Amazon.com or Barnes & Noble (www.bn.com)

Chiari Videos

2009-01-03T20:50:00.000-08:00

The Chiari Institute
TCI has dozens of excellent videos right on their website. Click on the "Patient Education" tab under the list of video titles. There you will see a list of subjects covering every aspect of Chiari from diagnostic testing to going home after surgery.

Mystery Diagnosis TV Show
Mystery Diagnosis on the Discovery Health Channel featured a story about Marissa, a TCI patient who has Chiari & Ehlers Danlos Syndrome. You can watch the program online.

Chiari T-Shirts Etc

2009-01-01T11:23:00.000-08:00

Visit my Cafe Press Store to find Chiari-related designs on T-shirts, sweatshirts, hoodies, coffee mugs, pins, magnets, stickers and much more. To visit my store, called One of a Kind Design Studio, please click HERE.

More designs to come soon!

Helpful Products

2008-12-04T16:33:00.000-08:00

Adjustable Beds
I am unable to lay down to sleep in a regular bed due to the pressure and pain that builds up in my head when I lay down. In fact I have spent almost 4 years sleeping in a LaZboy recliner. Last month I finally decided it was time to invest in an adjustable bed. I had always assumed Craftmatic was the only company that made such a bed... but boy was I wrong! If you do a Google search for adjustable beds on the internet, you will find dozens of manufacturers. (To see search results, click HERE.)

I purchased my adjustable bed from a local manufacturer called the Verlo Mattress Factory. (They have stores in ten different states.) They use a Leggett & Platt frame which is the very same company Craftmatic uses. I chose a king-size bed, which they were able to split down the middle so that my side could move and my husband's side would stay flat. We were able to pick out any mattress we wanted for each side. (I picked the softest one in the store for my side and my husband chose a firmer one for his.)

Here are some links to a couple of articles I found helpful:
Understanding Adjustable Beds
Understanding Hospital Beds

And here are links to a few adjustable bed manufacturer's websites. Some of them may have an actual store near you. Others have sales people who call or visit your home.
Verlo Mattress Factory
Denver Mattress Company
Golden Rest
Sleep Comfort
Tempur-Pedic
Craftmatic

Pillows
The Chiari Pillow™ was developed by WACMA's founder, Chip Vierow, in cooperation with Dr. Bolognese from The Chiari Institute. The pillows are custom made according to your height, weight and whether you are a side, stomach or back sleeper. They offer a 100% Comfort Guarantee that lets you return your pillow for any reason within 60 days.

Medic Alert Bracelets
Medic Alert.org
Here is the website for ordering the original Medical Alert bracelets and necklaces. They have many styles to choose from. Each item is engraved with your membership ID number, primary medical condition(s), and a 24-Hour Emergency Response Center phone number.

Creative Medical ID
This site offers over 200 creative styles of medical emergency jewelry including Medical ID Bracelets, Necklaces, Anklets, Medical Watches, Medical ID Sportbands and Waterproof Medical Bracelets.

Car Rear-View Mirrors
Lanechanger Mirror
According to their website, you will not have to "turn your head completely around, crane your neck or take your eyes off the road ahead to see what's going on behind you" with this rear-view mirror.

20/20 Vision Mirror
A panoramic rear-view mirror with "anti-glare technology" that is available in two sizes for small and large vehicles. (I also found this mirror listed for sale at Amazon.com)

Chiari Pen Pal Group

2008-11-30T07:17:00.000-08:00

If you would like to join a new Chiari pen pal group, (for letters mailed the old fashioned way!) please send an email to Jodie with your name, address, age and diagnoses to chiari.pen.pals@gmail.com. You can also let her know if you prefer your pen pal to be male or female or from a certain age group, etc. Wouldn't it be nice to get something good in the mail instead of another bill?

Chiari Scar Photos

2008-11-02T17:35:00.000-08:00

I apologize for not being able to post photos directly on my blog for you. Although I have some lovely scars, I haven't been able to take any decent photos of them. (It's not so easy to take a photo of the back of your head or lower back!) Other bloggers have posted some very good pictures, but of course it wouldn't be right for me to copy and paste them from their blog into mine. However, I think it would be OK if I gave you some links to their photos. After viewing them, I would suggest that you take a moment to bookmark their blogs for future reading, or make someone's day by leaving a nice comment!

Decompression Surgery Scars
Click HERE to see Lacie Heiser's decompression surgery scar courtesy of the TCI surgeons.
Click HERE to see Liz Witty's scar with stitches on the front page of her blog.
Click HERE to see Jenn Ann's scar with staples from her surgery with Dr. Oro.
Click HERE to see compare Katie's scars immediately after surgery to one year later.

Endoscopic Decompression Surgery Scars
Click HERE to see photos of Lori's "tiny" incision scar from this unique surgery.

Cranial Cervical Fusion Scars
Click HERE and HERE to see closeup photos posted on Dee Hall's blog October 7th & 10th, 2008.

Tethered Cord Surgery Scars
Click HERE to see Lacie Heiser's tethered cord scar from TCI, one- and two-weeks post op.
Click HERE to see a big photo of Carolyn's tethered cord scar with stitches, and HERE to see photos after the stitches were removed.

If you would like to share your own Chiari surgery scar photos, please email me at cmschultz@new.rr.com. Thank you!

Medical Tests

2008-10-23T08:36:00.000-07:00

Here is a list of tests your doctor may order to help diagonose
Chiari Malformation or related neurological conditions. Please keep in mind that most these tests are not given to everyone, but possibly ordered due to a specific symptom or complication. Don't hesitate to contact your doctor if you have any questions as their procedure may vary from the information below.

MRI and CINE MRI
Magnetic Resonance Imaging is the most common test used to help physicians diagnose and treat Chiari Malformations. Click here to go to RadiologyInfo.org for an excellent overvue of this procedure. The American Syringomyelia Alliance Project (ASAP) has information about CINE MRI on their website: here.

CT Scan
Computerized Tomography combines special x-ray equipment with computer programs to produce multiple cross-sectional images of the body. CT scans provide greater clarity and reveal more details than regular x-ray exams. Click here for an excellent overvue of this procedure on Mayo Clinic's website.

Invasive Cervical Traction
You can find a detailed description of this test on Chiari Connection International's website under the Question and Answers/General Information tab. A printable version can also be found by clicking here.

Kriss, a brave blogger who had surgery at TCI in May, 2005 and Tethered Cord surgery in January 2007, has posted some very detailed photos and thoughts about her cervical traction testing on her website.

Lumbar Puncture
ChiariOne.org has a short article titled Spinal Taps and Chiari describing the procedure, risks and what to expect after the test.

WebMD.com has a more detailed description of a lumbar puncture procedure on their website here.

Urodynamic Testing
If you are being screened for tethered spinal cord surgery, you may have to undergo urodynamic testing to measure the pressure in your bladder.

A Michigan nurse who recently underwent urodynamic testing gave me permission to share her experience with you:

I know a lot of people want to know what the urodynamic test is like. Maybe they do it different at other places, but I just had the urodynamics test on Thursday. These were the steps:
- Arrive with a full bladder.
- Undress from the waist down.
- Void into a sensored basin under a potty chair shaped table, this basin monitored the amount and flow velocity.
- The bed is laid flat-a small tube is placed into the bladder to collect residual urine, if that doesn't work a catheter is used and removed.
- Another catheter with small electrodes in it is inserted.
- An anal or vaginal tiny electrode is inserted.
- Stick on electrodes are placed on the buttocks and inner thigh.
- Everything is taped down and the table is put into the potty chair position-the bladder is filled with saline.
- First feeling of urge to urinate is noted.
- Strong urge to urinate is noted.
- Feeling of maximum capacity is noted.
- Bear down and cough at maximum capacity to check for leakage.
- Void again into the monitored basin.
- Everything removed and on your way!
Catheterization hurts me going in and coming out, it may not hurt everyone. I didn't love it but it was bearable. The PA was professional and I requested a female. They gave me a cover up sheet during the test and when I was asked to void (2 times) - they left the room. They also have numbing gel for the catheterization. I also had to have a consultation with a urologist before he ordered the test.

You can also find a printable copy of Urodynamic Testing instructions for patients from SUNY University Hospital by clicking here.

Neuropsychological Evaluation
Click here to download an educational pamphlet brought to you by the Public Interest Advisory Committee, Division 40 (Clinical Neuropsychology), American Psychological Association.

Sleep Study
Many people with Chiari have a difficult time getting a good nights sleep. A sleep study can help rule out problems such as sleep apenea or restless legs syndrome. To learn more about what goes on in a sleep lab, click here to read an article by the National Sleep Foundation.

Tilt Table Test
If you are suffering from unexplained fainting or severe lightheadedness, your doctor may order a tilt table test evaluate your body's cardiovascular response to changes in position. For an excellent description of this test by Mayo Clinic neurologist Jerry Swanson, M.D. , click here.

Alternative Pain Management

2008-10-17T07:28:00.000-07:00

If you're like me, you may be very concerned about taking prescribed pain management drugs because of the of side-effects they can cause. Long term use of over-the-counter analgesics and anti-inflammatories can also cause health problems like digestive disorders and liver damage.

You may want to consider asking your doctor about alternative methods for pain management. I have listed many of these of methods below, along with very brief descriptions and links to more information. This should only be considered a starting point. You will find many more choices and a lot more information if you are willing to do a little research.

TENS Unit

A TENS unit is a device that transmits electrical pulses across the surface of the skin and along nerve strands preventing pain signals from reaching the brain. (TENS stands for Transcutaneous Electrical Nerve Stimulation.) This also helps to stimulate endorphin production. You will need a prescription from a doctor in able to rent or purchase a TENS unit.. For more information on TENS units, you can visit www.tensunits.com

Massage

There are at least 80 different types of massage ranging from gentle and relaxing to active and intense. Massage help relieve pain by decreasing muscle tension, improving blood flow, relieving pressure on nerves, and restoring normal joint movement. Massage may also cause the body to release endorphins, and boost the immune system. Keep in mind that massage may be expensive, is generally not covered by insurance, and requires a time commitment. For more information, start by visiting WebMD.com.

Myofacia Release

Myofascia release is a type of massage specifically for stretching the fascia and releasing bonds between fascia, muscle and bone. The fascia is a seamless web of connective tissue that covers and connects the muscles, organs, and skeletal structures, located between the skin and the underlying structure of muscle and bone. For more information, please click HERE.

Craniosacral Therapy

A CST practitioner uses his or her hands to evaluate the craniosacral system by gently feeling various locations of the body to test for the ease of motion and rhythm of the cerebrospinal fluid pulsing around the brain and spinal cord. Soft-touch techniques are then used to release restrictions in any tissues influencing the craniosacral system. For more information, please visit the Upledger Institute.

Acupuncture

Researchers don't fully understand how acupuncture works.The modern scientific theory is that inserting the acupuncture needles stimulates nerves, muscles and connective tissue to release natural endorphins in the body. The needles are hair-thin, sterile and disposable. Most people feel little pain at their insertion. After they are inserted, the needles may be stimulated by twirling them or connecting them to a mild electrical current. They are withdrawn within seconds, or may be kept in place for a half-hour or so. Click HERE for an article about acupuncture on Mayo Clinic's website.

Biofeedback

Biofeedback is a technique in which people learn to control body activities such as their heart rate, blood pressure, muscle tension, and skin temperature. The activities are measured with electrodes and displayed on a monitor providing feedback to help the participant gain control over them. Click HERE to read the article Biofeedback: Using your mind to improve your health on Mayo Clinic's website.

Movement Therapies
Tai Chi and Qigong are gentle movement practices that have been used for centuries in China for health, religious practice and self-defense. As a form of exercise and relaxation they have been used to improve balance and stability, reduce pain and stress, improve cardiovascular health, and promote mental and emotional calm and balance.

Yoga is an ancient system developed in India that addresses the physical, mental and spiritual aspects of the individual. There are many different forms of yoga practice, each of which emphasizes different skills and goals. Hatha yoga is the most well known approach in the United States and is used here mainly as a form of exercise and stress management.

Feldenkrais Method

The Feldenkrais Method is an educational system centered on movement, aiming to expand and refine the use of the self through awareness. The Feldenkrais Method is applied in two forms by practitioners. During Awareness Through Movement lessons, the teacher verbally directs students through movement sequences. During Functional Integration lessons, the practitioner uses their hands to guide the movement of the student. Visit www.feldenkrais.com/ for more information.

Energy Work

Energy work is based on the idea that the body consists of energy fields that can be manipulated through various techniques in order to promote wellness. Practitioners believe that keeping the body's energy in a balanced state is the key to maintaining health so they seek to stimulate, unblock or disperse it.

Examples of energy work include: Shiatsu, which uses the thumbs, hands, forearms, knees and feet to apply pressure to the body; Therapeutic Touch , where practitioners assess the client's energy field, clear it, then transfer their energy to the client; Reiki, where hands are placed on areas of energy called chakras in order to balance energy; and Reflexology, where pressure is applied to the foot in order to improve circulation and relieve pain.

Guided Imagery

Guided Imagery is a technique that involves using the imagination and mental images to promote relaxation, changes in attitude or behavior, and encourages physical healing. To read an interesting overview from WebMD, please click HERE.

Hypnosis & Self Hypnosis

Hypnosis involves using suggestions made while an individual is in an altered state that can lead to changes in behavior or — in the case of pain — altered physical sensations. Self-hypnosis involves inducing an altered state of consciousness — and thus controlling pain sensation — by yourself. Click HERE to read the article The Role of Hypnosis for Pain Management on the American Pain Foundation website.

Relaxation Breathing
Relaxation Breathing simply involves taking a breath in through your nose as you count to four, holding it as you count to seven, and breathing out through your mouth while you count to eight. Click HERE to get instructions for another breathing exercise.

Cognitive-Behavorial Therapy

Cognitive-behavorial therapy focuses on your mental health and conditions such as stress and depression, which can accompany chronic pain and make it worse. It is important to be healthy emotionally as well as physically, to recover from chronic pain. For more information, start by clicking HERE.

How do I know if I should use Alternative Pain Management?

WebMD has a "Decision Point" tool that may help you decide whether or not to use complimentary (alternative) medicine. You can find it by clicking HERE.

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On a personal note: I have tried most of the methods listed here and found the following to be most helpful for my head, neck and shoulder pain: TENS unit, Massage, Myofacia Release, Relaxation Breathing and Cognitive-Behavioral Therapy. However, I believe that what works beautifully for me, may not work for you and vice versa! I encourage you to do your own research and be sure to consult your doctor before starting any therapy.

If you have any questions about my experience with these methods, or would like to share your comments about alternative pain management, please write to me at cmschultz@new.rr.com

Symptoms

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People with Chiari Malformations may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children.

The most common Chiari symptoms include:
Severe Headache and Neck Pain
Pain at the back of the head that is aggrivated by coughing, sneezing, straining etc.
Dizziness
Vertigo
Disequilibrium
Visual disturbances
Ringing in the ears
Difficulty swallowing
Heart palpitations
Sleep apnea
Muscle weakness
Impaired fine motor skills
Chronic fatigue
Painful tingling of the hands and feet ("Pins & Needles")

Other Chiari symptoms may include:
Nystagmus
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Difficulty walking on uneven ground / feeling ground under feet
Difficulty driving
Difficulty negotiating steps
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Insomnia
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud or confusing sounds
Decreased sensation to touch in extremeties
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Drooling
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading or focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing
Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Abrupt changes in blood pressure
Hiccups
Skin problems

Tethered Cord symtoms:
Urinary urgency
Frequency of urination
Urinary incontinence
Urinary retention
Frequency of urination at night
Difficulty starting urinary stream
Constipation
Diarrhea
Occasional incontinence for stools
Decrease interest in sexual relations
Difficulty reaching an orgasm
Decreased sensation in your pelvic area
Low back pain
Leg pain
Numbness under the soles of your feet
Keeping your knees bent at night
Low back pain, leg pain, or urinary symptoms while walking up stairs
History of severe growing pains during childhood and adolescence

Ehlers-Danlos (EDS) Symptoms:
Joint hypermobility
Loose/unstable joints prone to frequent dislocations and/or subluxations
Joint pain
Hyperextensible joints (movement beyond normal range)
Early onset of osteoarthritis
Soft velvet like skin
Skin hyper-extensibility
Fragile skin that tears or bruises easily
Severe scarring
Slow and poor wound healing
Molluscoid pseudo tumors

Less Common EDS symptoms include:
Early onset of chronic/debilitating musculoskeletal pain
Arterial/intestinal/uterine fragility or rupture
Scoliosis at birth and scleral fragility
Poor muscle tone
Mitral valve prolapse
Gum disease

What is Arnold-Chiari Malformation?

2008-10-06T19:07:00.000-07:00

Arnold-Chiari (kee-AR-ee) Malformation is a neurological condition in which the cerebellum descends out of the skull and crowds the spinal cord, putting pressure on the brain and spine.

There are three main types of Chiari. Chiari-Malformation-1, the simplest and most prevalent form, is generally considered to be congenital, (meaning you are born with it), although acquired cases are recognized.

Although Chiari is considered to be a rare condition, it's now diagnosed more frequently, largely due to improved imaging tests (MRIs).

Chiari symptoms often do not appear until adolescence or early adulthood, but can occasionally be seen in young children. Most people complain of severe head and neck pain. Headaches are often accentuated by coughing, sneezing or straining. Other symptoms can include dizziness, vertigo, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and "pins & needles" pain in the hands and feet. Because of the complexity of symptoms, patients with Chiari are often misdiagnosed.

Treatment for Chiari malformation depends on its severity and the characteristics of the individual patient's condition. Regular monitoring, medications and surgery are all treatment options.

My 3-D CT scan

2008-09-28T16:10:00.000-07:00

Here is a still from my 3-D CT scan that was ordered by The Chiari Institute. It shows how the hole cut into the back of my skull (by a local neurosurgeon) is in the wrong spot. It should be centered - not off to the right.

My MRIs

2008-09-18T14:22:00.000-07:00

This is my MRI from 3/10/05, before I had any surgery.

This MRI is from after my decompression surgery by a local neurosurgeon on 5/25/06. The dark area with little bubbles in it at the back of my neck is a psuedomeningocele, or large collection of spinal fluid that has leaked thru the patch placed on my dura (brain covering). The surgeon tried to fix this leak during a second operation, but was unsuccessful.

This is my most recent MRI. It was taken after my tethered cord surgery at The Chiari Institute on 7/13/07. The good news is, this surgery stopped the leak from my dura. The bad news is, my cerebellum is now permanently bonded to my dura with scar tissue. It is so tight that it is pulling on my brainstem. See how it is stretched and bent? I have no posterior flow of spinal fluid now either. Unfortunately, I have more Chiari symptoms now than I did before my surgeries and there is nothing that can be done about it.

My Story

2008-09-09T12:41:00.000-07:00

About 5 years ago I started having terrible headaches whenever I would lie down at night. I would wake up at 3:00 or 4:00 in the morning and toss and turn trying to find a comfortable way to sleep. The pain felt like pressure in my face behind my cheeks or eyes. My family doctor treated me for sinus infections several times, which I’m now certain I didn’t have.

I had been seeing a neurologist for several years because I have a history of migraine headaches. The first time I complained of the nighttime headaches he did not think they were important. When I continued to complain about them 12 months later, he ordered an MRI. It showed that my cerebellum was herniated through the bottom of my skull into my spinal canal. He said this was a rare condition called an Arnold-Chiari Malformation. He quickly added, “Don’t worry, we won’t do surgery right away. We can try different medications to help deal with the pain.” I think he was trying to make me feel better by this statement, but it had the opposite effect. Over the next two years he tried many different drugs that caused me to gain weight, fall asleep in the middle of the day and generally feel bad, but did nothing to relieve the pain. In fact, it was getting worse and I was getting little or no sleep at night.

I was getting very worried so I found a new neurologist for a second opinion. Although he thought surgery would be my only hope of relief, he wanted me to try one more drug first. He prescribed Topamax starting with 25 mg a day and slowly working it up to 200 mg a day. It did nothing for the nighttime headaches, but dramatically reduced my migraines. However, it gave me terrible cognitive side effects. For example, I could not figure out how to read a clock with hands on it, how to dial a long-distance telephone number, or how to read the gas gage in my car (I ran out of gas twice). Since then my dosage has been weaned back down to 25 mg so I no longer have the side effects but still have some relief from the migraines.

Next my neurologist referred me to a local neurosurgeon. During our consultation, the surgeon seemed very confident that he could help me. He said if Chiari was causing my pain, then decompression surgery would certainly take it away. I asked how many of these surgeries he had done and he replied 50 or 60. I asked if he ever experienced any complications and he said he had a spinal fluid leak once, but fixed it during the surgery. Having no idea what that meant, and not realizing at the time that 50 or 60 surgeries over a 30 year career works out to only 2 or 3 surgeries a year, I went ahead and scheduled my surgery for May 25, 2006.

Decompression surgery involves removing a small section of bone in the back of the skull, which relieves pressure by giving the cerebellum more room. The covering of the brain, called the dura, is then opened, and a patch is sewn in place to enlarge the covering and also provide more room. The surgeon may also remove or cauterize a small portion of the cerebellum that is herniated. The operation takes about two to three hours, and recovery in the hospital usually requires two to four days.

I remember waking up from my surgery and having intense pain in my entire head. I had a button to press for an automatic dose of morphine. I would wake up, press the button and pass back out again. When I was awake, I was extremely nauseous and vomited constantly. I was also having hallucinations. I remember seeing flies all over the walls, graffiti on my husband’s pants and piles of red blankets on shelves that were not really there. The nurses said the hallucinations were probably caused from all the morphine.

Several days after my surgery a nurse noticed I was leaking spinal fluid from my incision so I was given a lumbar drain for 3 days. (This is like a spinal tap that stays in your back to help regulate spinal fluid levels.) I had to lie on my side and not sit or stand up during the entire time. The leak persisted, so on June 10th the surgeon performed another operation to try and fix the source of the leak. When it was over he told me that the patch he put on my dura had a hole in it so he stitched it up and covered it with glue.

At some point I contracted bacterial spinal meningitis and was given antibiotics for 10 days. They told me the antibiotic was so powerful it would destroy my veins if they put it in my IV, so they had to put a special tube in my arm to deliver the medicine right over my heart. (I believe it was called a picc line.) At the end of 10 days no one tested me to make sure the meningitis was gone - they just assumed I was ok and sent me home.

I returned to the emergency room 2 days later with the worst headache of my life. I rated it a 15 on the 1-10 pain scale. I was given an IV and a button to press to deliver the drug Dilauded. I remember lying in the fetal position wishing someone would kill me because my head hurt so badly. After I had hit my button 5 or 6 times I finally started to feel some relief. The pain was still there, but it was almost like it was a separate thing from me. It’s hard to explain, but I finally felt like I had some control over the pain and I wasn’t so terrified. Suddenly I realized a nurse was shaking me and telling me to wake up because I was only breathing 4 times a minute. They had set my Dilauded pump dosage too high and I had accidentally taken too much. The nurse said she had to do something to reverse the effects of the Diluaded so I should prepare myself for the pain to come back. I cried and begged her not to do this and in the end she didn’t but stayed with me until I was breathing normally again.

Of course they soon discovered I was still infected with spinal meningitis. I was given another picc line and 6 more weeks of antibiotics. I was continuously nauseous and could not keep any food down for almost 10 weeks. I had no appetite, everything tasted like cardboard, and whatever I did manage to eat just came right back up as soon as I swallowed it.

The second operation to fix my dura leak was unsuccessful. I still had spinal fluid building up in a cyst under my skin at the back of my head. (This is called a pseudomeningocele.) My surgeon tried aspirating the fluid out with a large needle and syringe five different times, but decided to stop since it just kept coming back. Plus I think he was afraid of giving me another infection.

When I first learned about the pseudomeningocele, my surgeon talked about putting in a shunt to drain the built up fluid. When I asked him about it later, he just kept saying it was no longer an option. After four and half months in the hospital, my doctors said there was nothing more they could do for me. My husband started searching for a new doctor or hospital to transfer me to, but it was not an easy task. Most doctors were reluctant or simply refused to get involved with my case.

We were finally able to arrange my transfer to the University of Madison-Wisconsin hospital for a second opinion. It was a complete waste of our time. Their neurosurgeon actually said to me, “I do not want to ‘muck around’ in your head right now.” I stayed at their hospital for 4 days of observation and was sent home.

So I returned home feeling totally abandoned by my doctors. I was given no instructions on how to take care of myself or try and regain my strength. I had been bedridden for 14 weeks and had lost almost 40 lbs. There were no orders for any kind of physical therapy. I was weak and any amount of effort made my head pound and left me nauseous and shaky. Taking a shower wiped me out for the rest of the day.

On top of the pain of healing from two major brain surgeries, I now had more Chiari symptoms than I started out with. I still had pain in my face when I would lie down, plus I now had pain at the back of my head whenever I would cough, sneeze, strain, bend over, sit down or step down too hard. I was afraid to move. I also had pins and needles pain and weakness in my arms and legs and bouts of vertigo.

My husband and I started researching Chiari on the Internet and were amazed by the information we found. We were especially excited to discover The Chiari Institute in New York. Their website boasts that in 2003 alone, they performed 292 surgical procedures - more than half of which were referred for re-operation because of failed Chiari surgery elsewhere. (In 2007 TCI performed almost 700 Chiari related surgeries.)

I had my initial consultation at TCI in May 2007. It was a two-day appointment. The first day I met with a neurologist for an exam and had MRI, CT and X-rays taken. On the second day I met with neurosurgeon, Dr. Bolognese.

Dr Bolgnese went over all my test results and explained how my original decompression surgery had failed and told me I needed to have it redone. I was not surprised by this. He said my body was rejecting my dura patch (it was made out of bovine material) so that is why it was leaking. It needed to be replaced with my own material from under my scalp. He also showed me that the hole cut in my skull was not centered, it was off to the right side, so it needed to be fixed too. (I have posted my MRI and CT scans here on my blog if you would like to see them.)

Next, Dr. Bolognese told me I had a second neurological condition called a tethered spinal cord. I was shocked by this information. I knew that they tested me for it because it is a rare, but related condition, but I had no tethered cord symptoms (they include lower back and leg pain, incontinence and sexual dysfunction). Dr. Bolognese said the tethered cord was evident on my MRI and that I needed surgery to correct it or it would cause problems in the near future.

I had my spinal cord de-tethering surgery on July 13, 2007. Because of my previous experience, I was bound and determined to get out of the hospital as soon as possible! I was up and walking by day three and checked out on day four. The pain was pretty bad while I was in the hospital – I had the dreaded Dilauded pump again – but it was bearable once I got home.

When I healed from the surgery I noticed that my head was feeling a little better. I was having less pain when I moved suddenly or jarred myself. Before, I was afraid to even get the hiccups, because each one would cause a huge burst of pain at the back of my head. Now it was not as bad, but I couldn’t figure out why.

I returned to TCI in October for a checkup. I saw a neurologist, Dr. Chen. He took out my MRI scans from earlier that day and said, “Look, your pseudomeningocele is gone!” My dura leak was completely healed. I was so excited I didn’t even think to ask him why. I was just so happy the leak was gone because I assumed it meant I didn’t need any more surgery. I told him that I was feeling a little better, but I still had pain when I would lie down and especially with any kind of activity. He said my brain had moved a lot after my surgery. It may need some time to heal and re-route some nerves. In my excitement I asked Dr. Chen to sign a paper releasing me to return to work. I just wanted to be done with doctors and hospitals and get my life back to normal.

I went back to work in November. (I was a graphic artist and worked for our hometown newspaper.) It was very strange returning to work, because in my mind, I was only supposed to be gone for 6 weeks. For some reason I was having a hard time coping with the fact that it had actually been over 18 months. So much had changed in that time. Also, I didn’t get my same job back. Of course they couldn’t hold my spot forever, so I ended up having to take a different position. It was actually easier than my old job (not as stressful). Overall, I was very relieved be working again.

The very first day I went back to work I was sorry. I had terrible pain in my face and was extremely nauseous after only an hour at the computer. But that very same week I found out I had to have gallbladder surgery. I had been having sharp pains under my ribcage off and on for the last year that doctors attributed to stress. It turns out that if you don’t eat for long periods of time the bile in your gallbladder can crystallize and turn into gallstones. So I reluctantly agreed to more surgery and told myself that after my gallbladder was out, I would feel much better.

While I was recovering from that operation, I received a phone call from the hospital lab. They had found something suspicious on my last mammogram. I had to go in and have a sonogram of my left breast. During the sonogram, the technician called in a radiologist who said he was "pretty certain" it was cancer. He did a biopsy right then and there. Thankfully, it turned out to be benign. But they wanted to take the lump out anyway because they said it was the type of tissue that cancer likes to grow next to. So, the week after Christmas I had surgery to remove it.

During all this time, I was having a terrible time at work. I wasn’t getting any sleep because of the pressure and pain in my head. I spent most nights trying to sleep upright in a chair, but that wasn't very restful either. Working on the computer was giving me tremendous headaches and unrelenting nausea. I had terrible pins and needles sensation in my legs and feet and my fingers kept going numb. Every single ounce of my energy went into getting through another day of work. I believe I used up all my sick time in my first 6 weeks. I kept telling myself, if I can just get through this week, things would start to get better. But they just kept getting worse.

Meanwhile, I was useless at home. I completely stopped cooking and cleaning. I did not leave the house to even buy groceries. My daughter would come home from school and start looking through the cupboards and there would be nothing for her to eat. Even taking care of myself was getting impossible. Some days I was in too much pain or too exhausted to wash my clothes or take a shower.

Then, one day, my boss called me into her office. I was sure that she was going to fire me. She said she was really worried about me because I looked like hell. That’s when it finally dawned on me that I was pushing myself too hard. I contacted TCI and told them about my increasing symptoms. Dr. Bolognese replied by simply stating the obvious: I still needed to have decompression revision surgery. He had told me that at the start but I guess I had been in denial... wishing I could skip the second part and just get back to my normal life! He wrote a letter stating that I should not be working, ordered more MRI scans, and scheduled my surgery for May 22, 2008.

I had a phone consultation with Dr. Bolognese in April so I could ask questions about my upcoming surgery. He reviewed my new MRIs and gave me some unexpected news. After my tethered cord surgery, my spinal cord moved up and my cerebellum moved over and stuck to my dura with scar tissue. This is what stopped my dura leak. However, the scar tissue “went a little crazy” and is pulling on and stretching my brainstem. I have no flow of spinal fluid behind my brain anymore. He said the tonsils of my cerebellum are still herniated. This - combined with blocked spinal fluid flow and damage to my cerebellum and brainstem - are what's causing the symptoms I am having now.

Unfortunately, Dr, Bolgnese said it would be too risky to try and detach my brain from my dura now. So I'm afraid there is nothing else he can do to help me. He said even if he could detach my cerebellum, it would be so nicked up and irritated it would eventually just re-attach itself with more scar tissue. He gave me two examples of patients with similar situations who had surgery and ended up right back where they started in 6 months. He said if it were him, he would not risk it.

I guess I should be relieved that I'm not going to have any more brain surgery. But I am really disappointed that Dr. Bolognese can't help me. He said he doesn't think my cerebellum and brainstem will change much from the way they are right now. He doesn’t expect my symptoms to get any worse if I adjust my lifestyle to keep from aggravating things. But my symptoms probably won’t ever improve either. So now I am just trying to learn how to cope with them.

My greatest wish is to somehow spare someone else from going through what I have. My best advice is this: Never blindly trust a doctor to know what is best for you. Educate yourself. Research your treatment options. Especially if you are diagnosed with something you have never heard of! Find a doctor who specializes in exactly what you are dealing with. You need someone with loads of experience. 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.