"I am not sure either how they can conclude you don't have an obstruction since a CINE MRI wasn't done....it shows in real time what the fluid is doing...you have some and it is flowing or you wouldn't be able to do anything.....but if th..."
selmaS's Profile
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About Me: Female, Allentown, PA, member since Sep 2008
diagnosed with Chiari malformation and cervical spinal stinosis-Had my PFD for chiari May 28, 2009.
I also went thru early menopause, looking for any links to what is goi ... [More] ng on now.In 2001 was treated for tarsel tunnel and raynauds.All my life I've struggled with headaches, nausea, loss of balance. I am always cold, and until recently did not sweat and did not mind the heat. Now I feel very uncomfortable and other symptoms feel to be compounded by the heat. And I have constant buzzing and ringing in my ears that sometimes also feels like an ice pick being jammmed into my ear. I am searching for answers.
I have some new dx to add....I was dx with tethered cord, scoliosis. I am looking forward to seeing the drs at TCI in NYC.UPDATE: Drs at TCI have added to my list of conditions....cranial instability, and Ehlers Danlos syndrome.I was told I am a surgical candidate for both my Chiari and TC and that I do have a CSF blockage - TC surgery on hold at this time.
SC CHIARI WALK INFO-http://laurieyeh.blogspot.com/
2011- http://www.northshorelij.com/NSLIJ/Nationally+Recognized+Neurosurgeon+Supports+Chiari+Institute
SSID info-
http://www.ssdrc.com/ssd-chiari.html
PILLOW-
http://www.alltimemedical.com/product.html?product_id=8831&utm_medium=cse&utm_source=shopping&utm_term=8831-19619&atmrid=12&shopping
HEALTH PAGES LINK
Chiari
http://www.medhelp.org/health_pages/list?cid=186
GERD
http://www.medhelp.org/gastroenterology?section=health_pages
Links to threads on SSID and expediting medical INS-
http://www.medhelp.org/posts/Chiari-Malformation/Where-to-start/show/1747393
http://www.medhelp.org/posts/Chiari-Malformation/Link-for-SSID-Secrets-to-win-appeals-/show/1205049
EDS DR LIST LINK ~~ http://dyingtolive.info/doctors.html
EXPLOSION LINKS-http://www.mcall.com/news/local/explosion/
http://www.aolnews.com/2011/02/10/gas-explosion-destroys-homes-in-allentown-pennsylvania/?ncid=webmail
Bragging- DD was on Sesame Street here r the links-
http://www.gawkk.com/sesame-street-ballet-with-ellen-degeneres-2/discuss
http://www.mefeedia.com/video/14280968
Adding some more bragging here my DD was in a magazine article and I wanted to share : )
http://www.dance-teacher.com/
http://www.************/album.php?aid=2039663&id=56601218&ref=mf
Also here is my DD's wedding web site
http://weddings.theknot.com/pwp/pwp2/view/MemberPage.aspx?coupleid=6616715377053552&pid=605586
Just learned that The Hungry Ghosts (which Angie my DD,her friend Judy one of the profs from NYU Deborah were in) opened the same day DD got married! Go see it!
October 3 at 3:22pm · U do have to go to NYC to see this movie tho : )
Chiari related deaths links:
http://www.dailymail.co.uk/news/article-1293996/JLS-songwriters-wife-died-agonising-headaches-blamed- pregnancy.html- Sally
http://www.************/note.php?note_id=150011935042304&id=156342044378389 - Asthyn
http://brainintheneck.blogspot.com/2010/05/personal-stories-on-becoming-member-of_19.html#more - Clint
http://findarticles.com/p/articles/mi_qn4188/is_20091013/ai_n39261035/ - Kelly Morrill
http://wwwchg.duhs.duke.edu/diseases/pdfs/Chiari_Newsletter_2012.pdf
http://www.medhelp.org/posts/Chiari-Malformation/Chiari-Related-Death/show/1176509-
Garion
http://www.currentargus.com/carlsbad-news/ci_24100278/sunday-living-local-man-faced-disabling-spinal-cord
https://www.************/photo.php?fbid=467123963361082&set=a.201599936580154.50331.189557721117709&type=1&theater
Ryan Evans - http://www.youtube.com/watch?v=lS93DywHzSc&feature=share
List of Chiarians that have passed-
Steven Zuiderveen
Kelly Morrill
Garian Barber
Clinton Botha
Ashtyn Jeanne Mulherin
Sally Meehan
Michelle Marler McCollum
Shannon Terry
Janet Walters
Becky Hulce Harns
Heather Andrews
Bryce Avery
Mylee Grace Eaton
Katherine “Qat” Herring,
Margie Burns
Delia H. Saltsman
Michelle Fogarty Harrison
Lisa Ann Worobey {January 10, 2013}
Adam Caleb Jenema {January 20, 2013}
Erica Eldridge {January 23, 2013}
Melanie {January 29, 2013}
Cheryl Smith {April 2013}
Amanda Rene Sparks {April 3, 2013}
Delia Saltsman {April 4, 2013}
Mia McNear {June 4, 2013}
Georgina Weaver{ Aug. 2013}
Karen L. Paddock {August 7, 2013}
Ryan Andrew McGee {August 12, 2013}
Jessica Putman {October 4, 2013}
Cooper 'Coop' Casavan {October 12, 2013}
Jennifer Jill Ragle Hill {October 16, 2013}
Danica Grider Martinson {October 21, 2013}
Easton Tyler Moore {October 27, 2013}
Ryan Joseph Evans {October 27, 2013}
Baby David {Chiari Type III} {November 7, 2013}
Diane Behrendt-McAtee {November 7, 2013}
Sharon Fitzgerald (November 2013)
David Mosley (Dec 2013)
------2014------
Baby Michael James Rogers (Jan 2, 2014)
Catherine “Kitty” Ann Flor (Jan 18, 2014)
Lee Ann Dowell (Jan 22, 2014)
Darlene Sweetman (Jan 22, 2014)
Michelle Harris (Jan 26, 2014)
Sydney Nicole Porterfield (Jan 31, 2014)
James Hudson (Feb. 2014)
Carla Leite (Feb, 2014)
Sara Gibbins (Feb. 17, 2014)
Talia Goldenburg (Feb. 2014)
Gianna Marie 12/2/07 - 2/24/14
Bryan Pugh 4/2014
Valmai Boddington. May 2014
Caleb Arel {May 23, 2014}
Bryce Christian Foster (May 24, 2014)
Ian Joseph Wagner (4 yrs old) June 2014
Bethany Yedinak June 14, 2014 (car accident)
Kayla Brook Delk June 24, 2014
Barb Shaw July 1, 2014 Heart failure, coma
Jacob Alexander Smith July 1,2014 suicide
Seth Rodriguez (6 days old) July 7, 2014
Denise Roberts July 20,2014
Chloe Ann Cox Oct.5, 2014 ( 12 yrs old)
Kendra Bock Oct.17,2014
Claribeth Gabriela De La Cruz Nov.16.2014 ( 18 yrs old)
Thomas E. Griffith II Dec. 5 ,2014
Adam Ursin Dec,14, 2014
Adrian Fuentes Dec 17, 2014
****2015*******
Summer Elle Tudor (14 yrs) 01-05-15
Leshia Rosser Jones 01-10-15
Lindsay Toris Contreras 01-17-15 (VEDS)
Susan Gray 01-25-15
Stefanie Michelle Hudgins February 5, 2015
April Culley February 27, 2015
Glen Mamer March 1, 2015 EDS
Kale Brown March 13,2015
Jennifer Millard Ronca April 26,2015
Natali Masarskaya May, 2015 Chiari
Hunter Joesph Mullins May 26,2015
Kelli Michelle Carter-Dowling June,2015 EDS/Chiari
Rebecca E. Robinson July4,2015 Chiari
Kristy L. Svoboda 7-19-15
Melveen Worcester Aug 17, 2015 MVA
Tracie Britt Celms-Rinkovsky 8-29-15
Dawn Abdulaziz 8-31-15
Tiffany Vanrooy - 9-3-15
Janet Smith LaMarr -9-30-15 complications of a LP
Hallie Rose L. Brody 10-11-15
Keygan Ellis Robertson 10-20-15
Jamie Don Marek Horner 10-21-15
Katherine "Kat" Royal 10-23-15
Jessica Paddack 10-29-15
Randy Taylor 10-30-15
Jared Adam Life 11-2-15
Heather Brewster 12-11-15
2016
Rudolph "Rudy" Paul Aucoin III 1-13-16
**********************************************************
CHIARI WALK Charleston, SC- Date changed will update as soon as we have a new one- use link to make a donation or participate- https://sna.etapestry.com/fundraiser/AmericanSyringomyeliaAllianc/Summerville2012/aboutEvent.do
If making a donation or know of those that would like to donate, please use the above link and use the name Laurie Yeh as the person's team to get credit, mention Selma and MedHelp.
I am also very happy to serve as Community Leader in the Chiari,GERD and Spinal Cord Conditions/Disorders forums. We have such well informed and caring people on the boards.
HOW TO CHANGE A PASSWORD ON MEDHELP-
http://www.medhelp.org/health_pages/MedHelp/MedHelp---Account/show/618?cid=88
What do I do if I forgot my nickname and/or password?
Click the “Login” link at the top right hand corner of the site. Click the “Forgot your Nickname or Password” link located under the login fields. On the next page, enter the e-mail address or nickname that you use to log into your MedHelp account. An email containing a link to reset your password will be emailed to you. When you receive the email, click the link and follow the instructions. You will be asked to enter your new password twice. After you reset your password you will be automatically logged in. Remember that once logged in you may change your password at any time by clicking “Account Settings” on your profile page and clicking the “Password” link. [Less]
I also went thru early menopause, looking for any links to what is goi ... [More] ng on now.In 2001 was treated for tarsel tunnel and raynauds.All my life I've struggled with headaches, nausea, loss of balance. I am always cold, and until recently did not sweat and did not mind the heat. Now I feel very uncomfortable and other symptoms feel to be compounded by the heat. And I have constant buzzing and ringing in my ears that sometimes also feels like an ice pick being jammmed into my ear. I am searching for answers.
I have some new dx to add....I was dx with tethered cord, scoliosis. I am looking forward to seeing the drs at TCI in NYC.UPDATE: Drs at TCI have added to my list of conditions....cranial instability, and Ehlers Danlos syndrome.I was told I am a surgical candidate for both my Chiari and TC and that I do have a CSF blockage - TC surgery on hold at this time.
SC CHIARI WALK INFO-http://laurieyeh.blogspot.com/
2011- http://www.northshorelij.com/NSLIJ/Nationally+Recognized+Neurosurgeon+Supports+Chiari+Institute
SSID info-
http://www.ssdrc.com/ssd-chiari.html
PILLOW-
http://www.alltimemedical.com/product.html?product_id=8831&utm_medium=cse&utm_source=shopping&utm_term=8831-19619&atmrid=12&shopping
HEALTH PAGES LINK
Chiari
http://www.medhelp.org/health_pages/list?cid=186
GERD
http://www.medhelp.org/gastroenterology?section=health_pages
Links to threads on SSID and expediting medical INS-
http://www.medhelp.org/posts/Chiari-Malformation/Where-to-start/show/1747393
http://www.medhelp.org/posts/Chiari-Malformation/Link-for-SSID-Secrets-to-win-appeals-/show/1205049
EDS DR LIST LINK ~~ http://dyingtolive.info/doctors.html
EXPLOSION LINKS-http://www.mcall.com/news/local/explosion/
http://www.aolnews.com/2011/02/10/gas-explosion-destroys-homes-in-allentown-pennsylvania/?ncid=webmail
Bragging- DD was on Sesame Street here r the links-
http://www.gawkk.com/sesame-street-ballet-with-ellen-degeneres-2/discuss
http://www.mefeedia.com/video/14280968
Adding some more bragging here my DD was in a magazine article and I wanted to share : )
http://www.dance-teacher.com/
http://www.************/album.php?aid=2039663&id=56601218&ref=mf
Also here is my DD's wedding web site
http://weddings.theknot.com/pwp/pwp2/view/MemberPage.aspx?coupleid=6616715377053552&pid=605586
Just learned that The Hungry Ghosts (which Angie my DD,her friend Judy one of the profs from NYU Deborah were in) opened the same day DD got married! Go see it!
October 3 at 3:22pm · U do have to go to NYC to see this movie tho : )
Chiari related deaths links:
http://www.dailymail.co.uk/news/article-1293996/JLS-songwriters-wife-died-agonising-headaches-blamed- pregnancy.html- Sally
http://www.************/note.php?note_id=150011935042304&id=156342044378389 - Asthyn
http://brainintheneck.blogspot.com/2010/05/personal-stories-on-becoming-member-of_19.html#more - Clint
http://findarticles.com/p/articles/mi_qn4188/is_20091013/ai_n39261035/ - Kelly Morrill
http://wwwchg.duhs.duke.edu/diseases/pdfs/Chiari_Newsletter_2012.pdf
http://www.medhelp.org/posts/Chiari-Malformation/Chiari-Related-Death/show/1176509-
Garion
http://www.currentargus.com/carlsbad-news/ci_24100278/sunday-living-local-man-faced-disabling-spinal-cord
https://www.************/photo.php?fbid=467123963361082&set=a.201599936580154.50331.189557721117709&type=1&theater
Ryan Evans - http://www.youtube.com/watch?v=lS93DywHzSc&feature=share
List of Chiarians that have passed-
Steven Zuiderveen
Kelly Morrill
Garian Barber
Clinton Botha
Ashtyn Jeanne Mulherin
Sally Meehan
Michelle Marler McCollum
Shannon Terry
Janet Walters
Becky Hulce Harns
Heather Andrews
Bryce Avery
Mylee Grace Eaton
Katherine “Qat” Herring,
Margie Burns
Delia H. Saltsman
Michelle Fogarty Harrison
Lisa Ann Worobey {January 10, 2013}
Adam Caleb Jenema {January 20, 2013}
Erica Eldridge {January 23, 2013}
Melanie {January 29, 2013}
Cheryl Smith {April 2013}
Amanda Rene Sparks {April 3, 2013}
Delia Saltsman {April 4, 2013}
Mia McNear {June 4, 2013}
Georgina Weaver{ Aug. 2013}
Karen L. Paddock {August 7, 2013}
Ryan Andrew McGee {August 12, 2013}
Jessica Putman {October 4, 2013}
Cooper 'Coop' Casavan {October 12, 2013}
Jennifer Jill Ragle Hill {October 16, 2013}
Danica Grider Martinson {October 21, 2013}
Easton Tyler Moore {October 27, 2013}
Ryan Joseph Evans {October 27, 2013}
Baby David {Chiari Type III} {November 7, 2013}
Diane Behrendt-McAtee {November 7, 2013}
Sharon Fitzgerald (November 2013)
David Mosley (Dec 2013)
------2014------
Baby Michael James Rogers (Jan 2, 2014)
Catherine “Kitty” Ann Flor (Jan 18, 2014)
Lee Ann Dowell (Jan 22, 2014)
Darlene Sweetman (Jan 22, 2014)
Michelle Harris (Jan 26, 2014)
Sydney Nicole Porterfield (Jan 31, 2014)
James Hudson (Feb. 2014)
Carla Leite (Feb, 2014)
Sara Gibbins (Feb. 17, 2014)
Talia Goldenburg (Feb. 2014)
Gianna Marie 12/2/07 - 2/24/14
Bryan Pugh 4/2014
Valmai Boddington. May 2014
Caleb Arel {May 23, 2014}
Bryce Christian Foster (May 24, 2014)
Ian Joseph Wagner (4 yrs old) June 2014
Bethany Yedinak June 14, 2014 (car accident)
Kayla Brook Delk June 24, 2014
Barb Shaw July 1, 2014 Heart failure, coma
Jacob Alexander Smith July 1,2014 suicide
Seth Rodriguez (6 days old) July 7, 2014
Denise Roberts July 20,2014
Chloe Ann Cox Oct.5, 2014 ( 12 yrs old)
Kendra Bock Oct.17,2014
Claribeth Gabriela De La Cruz Nov.16.2014 ( 18 yrs old)
Thomas E. Griffith II Dec. 5 ,2014
Adam Ursin Dec,14, 2014
Adrian Fuentes Dec 17, 2014
****2015*******
Summer Elle Tudor (14 yrs) 01-05-15
Leshia Rosser Jones 01-10-15
Lindsay Toris Contreras 01-17-15 (VEDS)
Susan Gray 01-25-15
Stefanie Michelle Hudgins February 5, 2015
April Culley February 27, 2015
Glen Mamer March 1, 2015 EDS
Kale Brown March 13,2015
Jennifer Millard Ronca April 26,2015
Natali Masarskaya May, 2015 Chiari
Hunter Joesph Mullins May 26,2015
Kelli Michelle Carter-Dowling June,2015 EDS/Chiari
Rebecca E. Robinson July4,2015 Chiari
Kristy L. Svoboda 7-19-15
Melveen Worcester Aug 17, 2015 MVA
Tracie Britt Celms-Rinkovsky 8-29-15
Dawn Abdulaziz 8-31-15
Tiffany Vanrooy - 9-3-15
Janet Smith LaMarr -9-30-15 complications of a LP
Hallie Rose L. Brody 10-11-15
Keygan Ellis Robertson 10-20-15
Jamie Don Marek Horner 10-21-15
Katherine "Kat" Royal 10-23-15
Jessica Paddack 10-29-15
Randy Taylor 10-30-15
Jared Adam Life 11-2-15
Heather Brewster 12-11-15
2016
Rudolph "Rudy" Paul Aucoin III 1-13-16
**********************************************************
CHIARI WALK Charleston, SC- Date changed will update as soon as we have a new one- use link to make a donation or participate- https://sna.etapestry.com/fundraiser/AmericanSyringomyeliaAllianc/Summerville2012/aboutEvent.do
If making a donation or know of those that would like to donate, please use the above link and use the name Laurie Yeh as the person's team to get credit, mention Selma and MedHelp.
I am also very happy to serve as Community Leader in the Chiari,GERD and Spinal Cord Conditions/Disorders forums. We have such well informed and caring people on the boards.
HOW TO CHANGE A PASSWORD ON MEDHELP-
http://www.medhelp.org/health_pages/MedHelp/MedHelp---Account/show/618?cid=88
What do I do if I forgot my nickname and/or password?
Click the “Login” link at the top right hand corner of the site. Click the “Forgot your Nickname or Password” link located under the login fields. On the next page, enter the e-mail address or nickname that you use to log into your MedHelp account. An email containing a link to reset your password will be emailed to you. When you receive the email, click the link and follow the instructions. You will be asked to enter your new password twice. After you reset your password you will be automatically logged in. Remember that once logged in you may change your password at any time by clicking “Account Settings” on your profile page and clicking the “Password” link. [Less]
Best Answers: 330Top Answerer:
Pain
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Rare Diseases
Sep 18
"Many so called "trained" Drs are not researching Chiari and related conditions to know what and how we ARE affected by Chiari.
So many look for the herniation to be big, or long.....but that is not the issue.....consider the base of you..."
Sep 18
"i also have tinnitus and having surgery helped a little, but i have some days it drives ne wild.....
If you get to have a larger amount come out, see how it dries....and do tell your Dr......but it may be your Dr isn't up on Chiari and ..."
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07/19
Thoughts of you popped in my head today - did a little reflecting and realized it has been waaaaayyy toooo loooonngg since I logged on! So much to catch up on!
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