tag:blogger.com,1999:blog-4840567924243256522012-02-16T04:21:29.261-07:00Welcome! We offer care, friendship & support by touching the lives of everyone affected by Syringomyelia (SM), Chiari (CM) & related disorders. Please join us & share your thoughts, concerns & questions.smcmsupportgroupaznoreply@blogger.comBlogger741100tag:blogger.com,1999:blog-484056792424325652.post-48329797381431101182011-11-09T11:06:00.000-07:002011-11-09T11:06:44.779-07:00

HELLO EVERYONE! NEWS FLASH:  MEETING TIMES HAVE CHANGED!!! WE ARE NOW MEETING ON THE THIRD TUESDAYS OF EACH MONTH 11:00AM - 1:00PM. SO OUR NEXT MEETING WILL BE TUE. NOVEMBER 15TH AT 11:00AM. Still will be at the same location - St. Joseph's Outpatient Rehab - Conference Room.....so be there or be square!!!! As promised - Kathie had lined up a wonderful speaker for this meeting. A

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-59014248073787849802011-10-20T10:27:00.000-07:002011-10-20T10:27:44.207-07:00

HELLO EVERYONE: How is everyone - much better since the cooler weather is here!!!. Yes, it will return....they promised. Anyway we are writing to remind you of our upcoming meeting, Thursday, October 20, 1:00 - 3:00 pm, St Joes Outpatient Rehab, Conference Rm. IF YOU HAVE NOT ALREADY HEARD - THE "CONQUER CHIARI WALK ACROSS AMERICA" HEADED UP BY BETH WELLS, WAS A GREAT SUCCESS. THERE WERE UPWARDS

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-41964579835740025982011-08-17T21:00:00.002-07:002011-08-17T21:05:25.204-07:00

HELLO EVERYONE: Well how is everybody?? Surviving this hot and humid weather - we too wish it would just hurry up and rain, already!!! Anyway, here we go - frankly we are all ready to get back on track with our meetings....hope you all are ready too!!! REMEMBER THE CONQUER CHIARI "WALK ACROSS AMERICA" WALK HAPPENING ON SEPTEMBER 17TH. TO BE HELD AT THE ANTHEM COMMUNITY PARK, ANTHEM.

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-31056327624903093932011-06-30T20:45:00.004-07:002011-06-30T20:58:07.014-07:00

HELLO EVERYONE:We had a fair turn out - we missed those of you who were unable to attend - but it was great to see you that did attend. Especially, those of you who were brand new - thank you for coming to the meeting....we so enjoyed meeting you. And a special thanks to you that have not attended for awhile - it was great seeing your smiling face once more. We need to see your smiling faces

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-49794711665613923462011-04-15T11:26:00.001-07:002011-04-15T11:31:12.237-07:00

HELLO EVERYONE: Hasn't this weather been wonderful! If only it would stay like this through the summer. Hope all of you did something really fun last month on our meeting off. Cause we're back. We have some really interesting things to talk about this meeting. So you will want to be there so you can add your 2 cents worth. First and foremost - OUR MEETING TIME HAS CHANGED. OUR NEW MEETING TIME

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-15470238708931030082011-03-10T09:43:00.002-07:002011-03-10T09:57:10.761-07:00

HELLO EVERYONE:Due to the fact that our meeting falls during the same week of the K-12 Spring Break, many of us will be out of town or have kids at home, not in school....therefore, we are CANCELING THE MARCH 17 MEETING. But please readon as we do have some important items that need to be addressed by our groupand we need your input.1. IMPORTANT. We have the opportunity to change our meeting time

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-63494246880131805132011-02-10T13:20:00.002-07:002011-02-10T13:23:45.051-07:00

HI EVERYONE:Well it looks like we cried wolf! But what a meeting we had!!!! Our attendance was outstanding, the energy was high and the conversation was flowing like water.....Would our meeting had been better with the Clinical Nurse to Dr. Peter Nakaji, Joanie Cacciola, maybe yes maybe no.....BUT>>>>>> Guess What??? You can be the judge as Clinical Nurse, JOANIE for Dr. Peter Nakaji, is

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-59161503024748571682011-01-14T15:02:00.000-07:002011-01-14T15:03:00.786-07:00

HAPPY NEW YEAR EVERYONE!! And to start off the New Year we have some wonderful news. Finally a doctor from the Barrow community is recognizing our group and how important support for persons with Chiari Malformation and syringomyelia really is. Joanie Cacciola, RN BSN, CNRN,CCRC, Clinical Nurse Coordinator to Peter Nakaji, MD contacted us and is very interested to learn more about our support

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-28094199762227290452011-01-12T20:10:00.004-07:002011-01-12T20:18:03.541-07:00

Happy NEW YEAR!!This is a quick recap of our December Meeting of our Az Syringo/Chiari Support Group.We had a great gathering!!! Food was lovely and company was better. We welcomed 2new members and another member that had just left recovery from a recent surgery. All are doing very well and we were so happy to meet and great them.No new things were discussed but we are still committed to the

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-16819681378334667022010-11-12T15:39:00.001-07:002010-11-12T15:48:45.874-07:00

Hi Everyone Again:It's that time again....yes, same time, same place.....Thur. November 18 is Meeting Day. The speaker we had planned, Ashley Bridwell, topic: Laugh Therapy, was unable to make the meeting due to previous engagement. We hope to have her speak in January 2011. Won't that be a fun way to start the New Year! Therefore we will have open forum, which is great, as we have some

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-13028154155980352042010-11-04T11:32:00.005-07:002010-11-04T12:05:32.444-07:00

HELLO EVERYONE:We had another successful meeting on October 21st. Those of us there talked about all the items we outlined at our previous meeting and came up with the following recommendations:The members there thought Monthly Meetings were the way to go....everyone said they would miss their "life line" if we did meetings less than monthly. But it was recommended that we have meeting speakers

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-69980417208555521542010-09-28T11:40:00.002-07:002010-10-05T11:33:20.446-07:00

Hi everyone!We had a very good attendance at our first "fall meeting"......... about 12-15 people, including two new members! We were happy to welcome Crystal and Rachel and as always it is great to finally realize that you are not the only one fighting this battle. In fact our Az Syringo and Chiari Support Group is here to help you!Our medications discussion was very informative and helpful and

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-80731864460639486252010-05-18T14:10:00.000-07:002010-05-18T14:11:20.906-07:00

Yes, this is short notice, but the speaker we have lined up for our May Meeting is great. Her name and title is Ashley E. Bridwell, LMSW. We have asked her to address the family dynamics of persons being diagnosed with a life long conditions/diseases. How these affect the actual person as well as how it affects the spouse and other family members. We have asked her to please delve into the

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-43402784260719841112010-02-15T12:19:00.000-07:002010-02-15T12:20:31.016-07:00

Our upcoming MEETING on Thursday, FEBRUARY 18TH.As promised a member of the Naturopathic Family Carepractice is to speak to us discussing holistic medicineand how this approach pertains to Syringomyelia and Chiari.Naturopathic Family Care opened their practice inPhoenix in 1985. They combine conventional, complementaryand alternative medicine all in one clinic to providea truly holistic approach

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-67652354699600937902010-02-15T11:51:00.002-07:002010-02-15T12:19:19.959-07:00

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-37761451390984972702010-01-12T21:22:00.001-07:002010-01-12T21:27:48.052-07:00

As promised our Az Syringo & Chiari Support Group is offering speakers on nutrition and diet from both the traditional and the alternative perspectives.Stacy Bailey MS, RD, CDE, from St. Joseph's Hospital, Out Patient Dept. will be speaking to us regarding the traditional approach in nutrition and diet as they relate to our conditions.Stacy received her BS from George Fox University and her

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-66797945141067955242009-12-18T08:23:00.004-07:002010-01-12T21:22:21.906-07:00

It's not to late to get your Holiday Cards drawn by kids in our group! email azsyringochiari@cox.net to get yours TODAY!! Proceeds go to ASAP.We will not be meeting for the month of December, enjoy your Holidays!January 21, 2010 Meeting:Our speaker will be Stacy Bailey, RN of St. Joes, to speak to us regarding the traditional side of nutrition and medicine. This meeting should prove to be very

Schnee Familyhttp://www.blogger.com/profile/02711503014703255126noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-53187606951682319652009-11-08T13:55:00.004-07:002009-11-08T14:04:41.091-07:00

The 2nd Annual Miracle Race for Mylee Grace and her Chiari & Syringomyelia friends was a success! We are grateful for your support this year. Thank you very much for providing Mylee and her attendees the support necessary to have a successful fundraiser. With your help we were able to bring awareness to our community and increased funding for research. We continue our HOPE that one day the cure

Sara Eatonhttp://www.blogger.com/profile/13120643924899874623noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-58575894667828020722009-10-19T11:40:00.010-07:002009-10-19T12:56:43.002-07:00

Thank you Dr. Daschbach for a wonderful presentation at our Oct. 15th support group meeting!Below is a copy of the handout for those who could not attend.

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-33479547084174564082009-09-22T08:36:00.002-07:002009-09-22T08:39:58.248-07:00

About 200 people walked to raise money to research spinal cord diseases Sunday at the second-annual two-mile “Miracle Race for Mylee Grace,” a 3-year-old Valley resident who suffers from chiari disease.Chiari and syringo are spinal cord diseases that affect one in every 1,000 Americans.Mylee’s mother Sara Eaton, a co-sponsor of the event, said she and her co-sponsors have raised nearly $15,000 so

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-18382439094572138562009-08-29T15:55:00.002-07:002009-08-29T15:58:48.374-07:00

Never Give Up has become our family’s mantra… I may wake up some days feeling of no hope whatsoever but as soon as I see my daughter Mylee’s bright smile, it reminds me of her carefree attitude and joy for life! Despite her disabilities she seems to carry herself through the day and live life to its fullest! That is why, it is my mission to bring awareness to our communities about this

Sara Eatonhttp://www.blogger.com/profile/13120643924899874623noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-5507458557769081422009-08-24T10:48:00.000-07:002009-08-24T10:50:28.881-07:00

!!!Breaking News from Conquer Chiari!!!July 27, 2009 --We are excited to announce that Conquer Chiari has achieved a major milestone in our fight against Chiari.Specifically, through a lobbying effort, we were successful in getting the US House of Representatives to focus on Chiari research in the recently approved Labor, Health, and Education Appropriations bill (H3293). The language, which

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-81578914105275015702009-07-20T22:09:00.005-07:002009-07-20T22:21:07.084-07:00

Dr Oro's speech to the Arizona Syringo Chiari group. It was an astounding success!We have such an active group, people drove from as far away as Las Vegas to hear Dr Oro speak, along with Katie Klaas. It was a educational from a patient's perspective as well as a caregiver or parent.Thanks Dr Oro and Katie!PLEASE CLICK ON DR ORO's NAME TO LISTEN TO THE PODCAST! THANKS AND SORRY FOR THE

kathymichellehttp://www.blogger.com/profile/09132251939111672629noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-20904342932947319262009-07-19T10:38:00.000-07:002009-07-19T10:41:05.438-07:00

[Ed. Note: The opinions expressed below are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Anyone with a medical problem is strongly encouraged to seek professional medical care.] I am a board certified pediatrician practicing in West Palm Beach, FL. I was diagnosed with Chari malformation in July, 1988 and have undergone a

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-28593434068318545232009-06-23T11:18:00.004-07:002009-06-23T12:06:54.974-07:00

June 2009 Message from Column of HopeTo the CM/SM Community and Our Supporters: A lot has happened since October of 2008, when our Gala successfully raised over $60,000 to advance CM/SM research. In November 2008, the Stringers and I attended a conference with many of the world’s experts in Chiari malformation research that COH cosponsored with the National Institutes of Health, Conquer Chiari,

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-82736101104216735562009-06-21T15:59:00.007-07:002009-06-21T16:30:43.701-07:00

After searching for a Chiari/Syringo awareness magnet for our car...and not finding one, we decided to have one made! Please help us spread awareness of Chiari and Syringo by purchasing a magnet for your car! Preston is part of ASAP's Kid's for a Cure Club, which raises money for Chiari/Syringo research. All proceeds from the magnets will be donated to ASAP in his honor! Magnets are only $3 or 2/

Beth Wellshttp://www.blogger.com/profile/12799433549588284837noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-30973862818864351002009-05-26T12:05:00.002-07:002009-05-26T12:11:47.630-07:00

Most survival guides fail to consider some very useful tools: an individual’s character, wits, and worldview. The tips assembled here will change the way you approach each and every day—and help you survive a particularly bad one. Plus: Post your own survival story in the commenting area below. Text by Laurence GonzalesPhotograph by Dan Saelinger Long ago I believed that survival meant having a

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-36108949032972912862009-05-05T14:35:00.002-07:002009-05-05T14:41:08.598-07:00

My "Waiting Bag"- Since I unfortunately spend alot of time in doctors' waiting rooms, I quickly learned to make the most of this seemingly wasted time. I learned this skill from my over achiever mother, who used every moment as a chance to get something done. Since I became sick at a young age, she was the person who drove me to the doctor and had to wait with me, or for me, in the office waiting

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-49841425132466693052009-04-10T11:40:00.004-07:002009-04-19T00:49:34.038-07:00

It’s already been said we’ve got to have a dream to make life worth living. I also believe we need some people to share our dream and help us on the way.During his competitive golfing years Bobby Jones had O. B. Keeler as his confidant and companion. At Augusta National he found a financial backer in Cliff Roberts and a golf course architect called Alister Mackenzie to help turn his dream into

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-52062563724390796072009-04-02T21:57:00.010-07:002009-04-08T05:33:31.463-07:00

Preston was diagnosed with Chiari 1 Malformation and Syringomyelia in the Spring of 2008 after suffering from severe headaches...at the age of 6 years old. He underwent posterior fossa decompression in June, 2008. He had a 20mm cerebellar tonsil herniation prior to surgery and a syrinx from T2-T8. Surgery went well. Shortly after surgery, however, he started getting very intense headaches that

Beth Wellshttp://www.blogger.com/profile/12799433549588284837noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-68775305804678310822009-03-24T13:35:00.005-07:002009-03-24T13:58:20.211-07:00

CLICK ON DR ORO'S NAME FOR THE SPEECH TO LEAD YOU TO THE LINK. Click on the small arror for the speech to begin. There is new information about Chiari that we were very excited to be amongst the first to hear about. Dr Oro's speech on March 14, 2009 at the Disability Empowerment Center in Phoenix AZ was on "Chiari, a Current Synthesis."

kathymichellehttp://www.blogger.com/profile/09132251939111672629noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-81663019572745643462009-03-23T08:59:00.000-07:002009-03-23T09:02:00.100-07:00

'Vitamin' for baby brain disorder Pills A supplement may change the biochemistry of brain fluidResearchers say taking a special vitamin supplement during pregnancy could prevent hydrocephalus - one of the most common birth brain defects.Tests on rats showed a combination of folates dramatically reduced the rates of hydrocephalus - in which fluids build up in the brain's chambers.They even seemed

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-80192466468076893652009-03-01T13:42:00.000-07:002009-03-01T13:44:30.789-07:00

Dr. John J. Oro, a specialist in the rare disorders chiari and syringomyelia, will speak at a free seminar next month.Oro is medical director of the Neurosurgery Center of Colorado and founded the Chiari Care Center. His topic is "The Chiari I Malformation & Syringomyelia: A Current Synthesis." Also speaking is Katie Klas, a pediatric nurse practitioner at Phoenix Children's Hospital. Her topic

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-42567960946177894782009-02-10T08:46:00.000-07:002009-02-10T08:47:48.152-07:00

Key Points * A national pain management policy is greatly needed. * The DEA has discouraged many practitioners from prescribing needed medications and many pharmacies from stocking them. Pain care and pharmacy groups will work together this year to reintroduce a bill aimed at educating healthcare professionals and consumers about pain and its treatments."There is interest in raising

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-60159158076721215482009-02-03T11:11:00.002-07:002009-02-03T11:21:23.737-07:00

Headaches are the most common symptom associated with Chiari. Whether its throbbing in the back of the head (suboccipital), pressure behind the eyes, or brought on by coughing, crying, or singing, the majority - but not all - of Chiari patients suffer from some type of headache. One such headache which seems to be common among Chiari patients are migraines. Migraines refer to severe

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-49891953162731572412009-01-23T18:01:00.002-07:002009-02-05T16:57:00.040-07:00

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-1471823131571631532009-01-18T13:21:00.002-07:002009-01-18T13:27:37.956-07:00

Presented by Dr. Burgess, Ph.D. toAZ Syringo Chiari Support Group Jan. 15, 2009What is Behavioral Medicine?• Addresses the psychological aspects of illness and health promotion including:• Stresses associated with illness• Health behavior and lifestyle change• Preexisting difficulties with stress and coping• Promoting wellbeingOverview of Chronic Pain• Types of Paino Acute vs. Chronico

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-10238990539629892322009-01-12T17:08:00.002-07:002009-01-12T17:15:14.821-07:00

ASAP joins with the Congress of Neurological Surgeons (CNS) to sponsor resident fellowships. Neurosurgical residents can apply for up to $10,000 to conduct research or receive special training particular to syringomyelia and/or Chiari malformations. These fellowships provide a unique opportunity to encourage upcoming neurosurgeons to explore the complex issues surrounding syringomyelia and Chiari

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-35956015650334984132009-01-02T09:26:00.002-07:002009-01-02T09:30:47.420-07:00

WINTER ADVENTURES 2009Adaptive Cycling Come and enjoy the thrill of cycling through the beautiful Phoenix bike paths. All levels of cycling experience are welcome. We provide hand-cycles, tandem bikes and recumbent tricycles, as well as all safety and adaptive equipment. Friends and family are welcome to bring their own bikes and join us. Saturdays: January 10—February 14; 10:00 am—12:00 pm

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-53494367543624076732008-12-22T16:39:00.005-07:002008-12-22T16:55:27.510-07:00

When dealing with a Chiari or syringomyelia diagnosis, patients may find themselves getting a quick neuroanatomy lesson from a neurosurgeon with the aid of an anatomical model. His precise surgeon’s fingers might push down into the space at the base of the model’s skull, mimicking the cerebellar tonsils crowding into the spinal canal. Taking this brief introduction further and gaining a basic

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-33939480123387157282008-12-14T20:57:00.003-07:002008-12-14T21:41:52.116-07:00

It’s the most wonderful time of the year. But, the demands of the holiday season can overwhelm even the healthiest and most energetic among us. For individuals battling chronic pain, holiday stress and anxiety can be magnified, making symptoms even worse. While it may be impossible to avoid holiday stress altogether, there are steps caregivers can take to minimize anxiety and help their loved

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-18744171406083849182008-12-09T13:01:00.008-07:002008-12-11T08:56:05.641-07:00

WE HAVE EXCITING NEWS!! ON MARCH 14TH, 2009Dr. John Oro, Medical Director of Neurosurgery at The Chiari Care Center in Colorado& Katie Klas, PNP to Dr. Manwaring Pediatric Neurosurgeon from Phoenix Children’s Hospital will both be speaking at our support group meeting!!Dr. John J. Oró is a nationally recognized leader in the treatment of Chiari I Malformation. In 2005, he founded The Chiari

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-75918633931543430912008-12-04T00:32:00.003-07:002008-12-04T00:44:14.066-07:00

Most patients in chronic pain go to primary care providers—general practitioners, nurse practitioners, and physician's assistants. The problem is that too many of them stay there. In the past two decades, pain management has emerged as a distinct field, with its own physician, the pain specialist, but a 2005 study showed that less than 5% of chronic pain sufferers ever see one. Pain specialists

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-77190813358672446812008-11-21T22:11:00.003-07:002008-11-21T22:17:44.438-07:00

I promise to accept the fact that I have Chiari Malformation, a neurologicaldisorder which will limit my abilities in my everyday life.While I will always have Chiari, some days will be good and some days willbe bad. I will be thankful for the good days and try to make the most of them.When I am having a bad day, I will try to remember that most likely it willnot last.When I am having a bad day,

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com2tag:blogger.com,1999:blog-484056792424325652.post-71596870583673776422008-11-14T11:40:00.004-07:002008-11-14T11:54:11.791-07:00

Excerpt: 'How Doctors Think'by Jerome Groopman NPR.org, March 15, 2007 · INTRODUCTIONAnne Dodge had lost count of all the doctors she had seen over the past fifteen years. She guessed it was close to thirty. Now, two days after Christmas 2004, on a surprisingly mild morning, she was driving again into Boston to see yet another physician. Her primary care doctor had opposed the trip, arguing

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-73410039409831916692008-11-03T16:00:00.002-07:002008-11-03T16:11:08.100-07:00

By Robert S. Boyd | McClatchy Newspapers WASHINGTON — Medical science has learned a great deal about the causes of pain and ways to relieve it, pain experts say, but for a host of reasons, the treatment of pain and suffering has improved hardly at all in recent years. John Seffrin, the president of the American Cancer Society, calls this "a national health-care crisis of under-treated pain.''"

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-43025778165314174532008-10-26T17:11:00.000-07:002008-10-26T17:13:26.283-07:00

By eHow Health Editor Patients or caregivers are often responsible for getting copies of medical records to specialists and consultants. Maintaining an organized copy of your own records--especially if you're ill or have a chronic condition--can literally mean the difference between life and death.Step1Use a large three-ring binder with dividers to organize the information. Step2Collect all

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-60874270026098639332008-10-17T13:13:00.005-07:002008-10-18T10:01:27.395-07:00

Make an on-line slideshow at www.OneTrueMedia.comWe started the day greeted by the sunrise and sounds of nature! Our first Walk Across America for Chiari & Syringo was here!!Our goal was to have 100 people at the walk and build awareness & education in the community about SM/CM. We were blessed with 350+ walkers and 53 corporate sponsors from the medical & local community. Unbelievable!!

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-31008462705842200472008-10-11T12:53:00.009-07:002008-10-13T20:10:27.760-07:00

The holidays are approaching, and a need to increase our shopping will follow. To help every dollar spent go as far as possible and keep our pain and stress levels from being acerbated this article was perfect timing. Carrie and I have the same views regarding shopping online. As I could not have written the article better, why try! Although I have made a couple changes to her original article

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-36146121966134914992008-10-05T12:48:00.003-07:002008-10-05T12:54:52.124-07:00

"Your task is to build a better world," God said. I answered, How? The world is such a large place, so complicated and I am so small and you so sad. There is nothing I can do." But God in all His wisdom said, "Build a better you." God gave us two ends. One to sit on and one to think with. Head you win and tails you lose.All of you have had several challenges, trials, and tribulations as a result

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-69589700331556898782008-09-29T21:30:00.005-07:002008-10-04T17:42:59.228-07:00

Thank you to our long standing member & friend Chris, for sharing his inspirational story with us! Understand Chris’s case is unusual and the majority will never need this many surgeries. The focus is on the positive, remarkable way Chris has overcome the obstacles in his life and pushed forward!It was the perfect way to start the walk! WE WILL WIN! WE WILL WIN! WE WILL WIN!Fourth Down

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-12315319406734423252008-09-27T00:12:00.002-07:002008-09-27T00:17:47.334-07:00

SYRINGOMELIA Yesterday I laughed. Today I cry. Yesterday I ran. Today I walk. Yesterday I played. Today I watch. Yesterday I whined. Today I speak. Yesterday I danced. Today I read. Yesterday I laughed. Today I think. Today is very DIFFERENT from yesterday. Bridget Cara Smith 03/01/02--------------------------------------------------------------------------------by Dr. Vann Arthur Smith Bridget,

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-88223315813259264672008-09-12T00:23:00.004-07:002008-10-15T12:06:18.347-07:00

Whoo hoo!! We did it! AZ Syringo Chiari Support Group has been presented with a Arizona Senate Proclamation...declaring the month of September as Chiari and Syringomyelia Awareness Month!! It is very exciting to read "Now, therefore, I Jack Harper, Arizona State Senator, do hereby designate each September as Chiari and Syringomyelia Awareness Month." This picture includes just a few from our

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-87993436140346039652008-09-10T16:28:00.008-07:002008-09-10T19:10:44.199-07:00

Pain care advocates across the country are engaging in activities promoting Pain Awareness Month to focus public attention on pain as a national health care problem. This is a time for uniting and doubling our efforts to raise awareness about the under treatment of pain – a time to break down barriers that prevent those living with pain from getting the help they desperately need, and - a

nanhttp://www.blogger.com/profile/04050651796285162299noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-91804041981797958122008-09-06T09:35:00.002-07:002008-09-06T09:46:47.063-07:00

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-53551504237770676952008-08-30T13:42:00.002-07:002008-08-30T14:09:04.837-07:00

Most people with Chiari and/or syringomyelia will see a neurosurgeon at some point in their life. Neurosurgeons are highly educated and trained professionals, so for patients the experience can sometimes be intimidating. And for those who require surgery...they will find themselves having to put a tremendous amount of faith into the hands of someone they have only met a couple of times and

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-59805544717252356282008-08-25T00:05:00.002-07:002008-08-25T00:08:53.058-07:00

Those of us who live with a chronic illness, deal with a lot of difficult emotions. I often find myself with feelings like frustration, boredom, loneliness, sadness, etc. For me, these emotions become their strongest at night, when I usually cannot sleep or go out. My biggest coping skills- going out for a walk or talking with a friend, are not options in the middle of the night. So, how can you

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-32623050010496516872008-08-16T22:46:00.007-07:002008-08-17T23:04:04.187-07:00

It has been brought to our attention that our support group member's are receiving emails from Alana Holdsworth/Volding & Brandee Amis new group Chiari Syringomyelia Network which they state is a nonprofit. Apparently she is using our support group member list to solicit our members without our permission or yours. We want to clearly state we are not associated in any way with this group, Chiari

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-69125047492162997352008-08-11T21:20:00.006-07:002008-08-30T14:40:54.887-07:00

Time for some music therapy. Music is a powerful healing force recognized around the world in many cultures. The beats, the lyrics, and the tones resonate within a person's soul. Even though personal preferences vary, the healing effects from music do not vary. Music evokes an emotional, calming feeling of positivity. Listening to music can actually lower heart rate and blood pressure. Plus, the

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-22448359510408243392008-08-02T16:02:00.002-07:002008-08-02T16:16:28.429-07:00

A young woman went to her mother and told her about her life, and how things were so hard for her. She did not know how she was going to make it, and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.Her mother took her to the kitchen. She filled three pots with water. In the first pot, she placed carrots, in the second she placed

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-77397078538544371582008-07-25T19:59:00.002-07:002008-07-25T20:07:29.323-07:00

I have unfortunately been on both sides of this article. I have spent time visiting friends and family when they have been sick, but I have more often been the patient everyone is visiting. Many of the visits went very well, but unfortunately others didn’t go so well for them or me. Hopefully my mistakes or my tips from experience will help you.Visiting someone who is sick isn’t always easy, but

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-30220352941575216142008-07-19T13:43:00.002-07:002008-07-19T13:58:25.574-07:00

By Angela MackBeing disabled is the hardest job I've ever had. It's 24 hours a day, every day of the week and every week of the year. There are no vacations, and the pay is lousy. Sure, I have a $20,000 wheelchair but it didn't even come with air conditioning or a spare tire. Thanks to a disorder known as Syringomyelia (SM), I've been on this job for 20 years specializing in quadriplegia. Today I

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-3332309220041928002008-07-18T20:19:00.001-07:002008-07-18T20:22:20.396-07:00

Friday, July 18, 2008 FNCCaitlin WhiteInsurance provider Aetna will cover a Florida woman's brain surgery after the intervention of a "FOX & Friends" contributor.Caitlin White, 19, of Bartow, Fla., suffers from a debilitating brain disorder that could kill her. She was scheduled for surgery when her insurance carrier, Aetna, canceled the family's coverage just minutes before she was scheduled to

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-40189767753768806482008-07-12T00:11:00.005-07:002008-08-18T23:26:25.801-07:00

Many persons are frustrated when physicians don't understand or ignore the diagnosis of Chiari I malformation (CMI). This often leads to visits to multiple physicians and increases frustration and disillusionment with the health care system. In one of our analyses, we noted an average duration of symptoms before correct diagnosis was 6 years. There are multiple reasons for the lack of

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-37526624954334059662008-06-27T11:53:00.003-07:002008-06-27T12:08:15.710-07:00

The Discovery Channel presents "Mystery Diagnosis", a Chiari special.This is a heart rendering story of a Mother's love and determination!Video Can Be Viewed Online Here Without Downloading: Chairi Video ONLINEPlease Be Patient, Video Takes About 15 Seconds to Start.NOTE: Video may be "Choppy" due to sreaming on Internet. If it stops be patient for it to buffer.Video can be downloaded here:

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-15754473712905384332008-06-22T11:10:00.001-07:002008-06-22T11:12:26.877-07:00

Committed to Making a Differenceby Jean Kinsey It is just another day in Paradise to Sarah Bates, but it is a great day for the physically challenged for whom Sarah has paved a more accessible trail. She dances on her toes to an Irish jig but still needs her power chair to propel her to the town council meetings, where she rallies for compliance to the 1992 law mandating better access for the

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-38092835574121398322008-06-16T20:46:00.001-07:002008-06-16T20:49:15.107-07:00

You may have cheered for him when he ran the Air Force Marathon to raise money for Conquer Chiari, now you can read his whole, amazing story. From wheelchair to marathon, Ray's story will inform, inspire, and raise money to fight Chiari.Learn More Or Purchase This Book: Contents Under Pressure (2nd Edition)(Note, this book is offered through www.lulu.com. Clicking on this link will take you off

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-6717801454235312772008-06-14T20:43:00.001-07:002008-06-14T20:46:08.771-07:00

By Shawna Countryman Download as .pdfA diagnosis of syringomyelia (SM) and/or Chiari (CM) may affect us in many different ways. Dealing with the various facets of a long-term condition can leave one feeling alone, frightened and confused. Not only will we have to deal with the physical attributes but also the emotional aspects. Emotions can vary from anger, disbelief, frustration, denial, loss

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-74417246838177857352008-06-12T09:47:00.001-07:002008-06-12T09:50:56.043-07:00

Has your experience with pain (either personally or through a loved one) ever prompted you to express yourself in a creative way? Some of the most authentic and soulful works have had their origins in the deeply personal experience of pain. Please consider submitting poetry, prose, digital photograph or video to APF's online Pain and Creativity Center, provided in collaboration with our project

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com0tag:blogger.com,1999:blog-484056792424325652.post-35407876352015757322008-06-07T16:25:00.001-07:002008-06-07T16:25:25.557-07:00

It's wonderful!!!! Great work Ladies!!! I've been out of town and an now just catching up on my emails. What a wonderful surprise to see such a great blog! I know the time it took to set this up. Thank you for including the tribute to Shelley and Judy. You did a terrific job. Thank you. Nancy

AZ Syringo Chiarihttp://www.blogger.com/profile/15591377598011974661noreply@blogger.com2tag:blogger.com,1999:blog-484056792424325652.post-75578436815706606472008-06-05T21:32:00.003-07:002008-06-05T22:07:45.713-07:00

Howdy, everybody!!! I hope this message finds you all happy and healthy, and in the mood for a road trip. I will be attending the ASAP Conference in Virginia in July, and I am hoping that some of you out there will feel like joining me. If any of you are considering going to the conference this year, please feel free to contact me. Thanks very much, and have a lovely day!

Brandeenoreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-63207748527421225852008-06-03T11:38:00.002-07:002008-06-03T17:18:30.171-07:00

Hello to all, today June 1st we are planning our first "international" prayer day for all of us with Chiari Malformation, and our families. Asking help to guide us through the daily dealings with this condition. All we ask is that at some point throughout your day today, you say a prayer for us. I know that we ALL have different believes, but I do daily give thanks for all I have in MY life, good

smcmsupportgroupaznoreply@blogger.com2tag:blogger.com,1999:blog-484056792424325652.post-36777778648047090022008-06-01T20:38:00.002-07:002008-06-01T20:47:26.263-07:00

Hello everyone. I hope you will find our new blog useful, not only for disseminating information, but as a way of staying in touch and being connected in a supportive way. We could use pictures, videos, or any type of articles you may have in your possession to make our site more informative. Please feel free to give us your feedback and lets make this our special support site.

smcmsupportgroupaznoreply@blogger.com1tag:blogger.com,1999:blog-484056792424325652.post-17823314122765635282008-05-29T23:25:00.006-07:002008-05-30T00:06:50.907-07:00

We have great news to share!! September is Chiari awareness month and the Conquer Chiari organization is starting a “walk across America” this year. Our support group will be sponsoring the local event and representing Arizona!!The walk will be on Sept. 20th starting at Papago Park going through the Botanical Garden and ending back at Papago Park. Although the walk path is a combination of paved

Friends in Phoenixnoreply@blogger.com3