FAQ/Help |
Calendar |
Search |
Today's Posts |
11-11-2009, 09:32 PM | #1 | ||
|
|||
Member
|
Hi All,
I am from the RSD family but I am posting here today because my 15 daughter was diagnosed today with Chiari Malformation. We are at the beginning of this journey. She will be seeing a Peds. neuro. doctor who specializes in all headache and spine issues at NY Pres. Cornell on the 24th, I am also going to try and get her into the The Chirari Institute in Great Neck, Long Island, NY, they are suppose to be the best. . I would greatly appreciate any input, suggestions, good or bad. If anyone has info. on any doctors again good or bad please inform me. I want my daughter to get the best possible care. My daughter is a great child and it is killing myself and my husband that she has to go through this so please any input at all would help. Thank you, Gabbycakes |
||
Reply With Quote |
11-11-2009, 10:06 PM | #2 | ||
|
|||
Junior Member
|
Quote:
|
||
Reply With Quote |
11-14-2009, 04:18 PM | #3 | ||
|
|||
Member
|
Thank you for the advise I truly appreciate it.....
Gabbycakes.... |
||
Reply With Quote |
11-17-2009, 08:04 AM | #4 | ||
|
|||
Member
|
My Daughter had her appt. yesterday at NYPres Cornell and her Chiari is very slight, an MRI will be done to confirm the degree of her condition. She went back to school today with no headache.
Thanks for the reply. Gabbycakes. |
||
Reply With Quote |
11-17-2009, 10:28 PM | #5 | ||
|
|||
Junior Member
|
That is good news!!! I wish you all the best for you and your family...stay in touch
|
||
Reply With Quote |
11-20-2009, 06:10 PM | #6 | ||
|
|||
Member
|
|
||
Reply With Quote |
12-29-2009, 05:40 PM | #7 | ||
|
|||
New Member
|
Make sure they are checking MRIs of brain, thoracic, and lumbar to check on progress of syringomyelia.
|
||
Reply With Quote |
12-31-2009, 10:00 AM | #8 | ||
|
|||
New Member
|
I would recommend getting a CSF study done.
Chiari's is defined by the Cerebellar tonsils descending into the foramen magnum by however many mm... but the symptoms seem to depend more on the circulation of the Cerebral Spinal fluid than the actual tonsils, themselves. Some people have a 1mm escopia with many symptoms, and there are others with 7-9mm escopia with light symptoms. *edit* Hope this helps. Good luck to your family. This is a hard thing to have to hear, but keep your chin up, stay strong, and you will get through it. Last edited by Chemar; 12-31-2009 at 10:38 AM. Reason: NTguidelines on linking for new members |
||
Reply With Quote |
01-28-2010, 07:09 PM | #9 | |||
|
||||
Member
|
Quote:
|
|||
Reply With Quote |
02-02-2010, 10:05 AM | #10 | ||
|
|||
Junior Member
|
Quote:
Gabby, I can assure you from my research that the doctors at GreatNeck are the best in the country. Yes, do your homework. Also, before surgery if possible check into natural alternatives as there is research being done. I was diagnosed in 2006 and did have surgery by Dr. Barth Green -also one of the best- however the doctors that youare talking with specialize in continued followup. it is WHAT they do. Relax. What doctor are you consulting withat this point? ~WyndyHopes~ |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
advice needed on what tod o with contractor from hell and my family room | The Stumble Inn | |||
Google says - health advice online is actually good - | Parkinson's Disease | |||
Need some good advice!!! | Peripheral Neuropathy |