SelmaS,
I want to buy you a new keyboard so bad. LOL I love your posts. They make me smile everyday!
--Hi-and-welcome-to-the-Chiari-Forum.
--Swallowing-and-digestive-issues-are-Chiari-related-many-of-us-have-many-related-conditions-some-may-cause-similar-symptoms-to-Chiari.Most-of-your-symptoms-we-all-can-relate-to.
Once-you-have-testing-to-rule-out-related-conditions,like-Syringomyelia-ICP-POTS-sleep-apnea-Ehlers-Danlos-tethered-cord-and-a-CINE-MRI-to-rule-out-a-CSF-obstruction.
-Educating-yourself-know-you-are-not-alone-and-researching-Drs-will-help-calm-your-fears.
Hi Heather.
You need to seek out a neurosurgeon who specializes in Chiari. Not just one that says he treats it. Many say they know what Chiari is and then have old information about diagnosing and treatment Chiari. This is very important. There is a list of doctors on this forum who other members have seen and feel they had a good experience with.
I went to a neurologist and a neurosurgeon here in state. The neurologist said he didn't think my problems were from Chiari. The neurosurgeon flat out said I do not have it. Turns out, I not only have Chiari - I also have craniocervical instability. So, please find someone who focuses on Chiari.
Herniations can get worse for various reasons. Symptoms can get worse for various reasons, especially if you have EDS. Injury to the neck can awaken symptoms in someone who previously had no idea they had Chiari - which is most often congenital.
You should also ask about a syrinx, EDS, and craniocervical instability - all common with Chiari. EDS is especially important as if the Chiari is treated alone, and not the craniocervical instability, most often the surgery will fail and needs to be repeated. There are measurements the neurosurgeon can do on your MRI scans that will help identify craniocervical instability. The doctor should pull these up in front of you and show you the measurements.
If the doctor tells you that the herniation size matters - its time to find another doctor. Chiari is not about the herniation. It is about the malformation of the actual skull and the obstruction of proper CSF flow.
EDS can be tested for through the beighton scale and through genetic testing.
http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/
You should also ask about a CINE MRI to study your CSF flow and MRI for your cervical, thoracic, and lumbar regions to look for a syrinx. Another common thing you might here is that a syrinx only forms in the cervical spine. That is inaccurate. Its more common in the cervical area, but can develop in other areas as well.
Hope you are able to get some answers and that you don't feel to bad during the process.
Hi there,
I too have problems swallowing, I choke at every meal! Very frustrating! There are many problems that go with Chiari! None of them are fun! Hang in there & hope you get some help! Good luck !!