Hello, My name is Tristan. I was diagnosed at the age 17 with chiari malformation type 1. I am now 19 years old, this is my second year post decompression surgery and all my symptoms seem worse each day. This is my first time reaching out to a community. I am searching for a balance between it all, a way to cope. On February 24th, 25th, and 26th I have a series of appointments at the Chiari Care Clinic in Aurora, Colorado. I hope to find some release.
Tristan, welcome. What is happening to you has happened to many of us too. I am sorry. I will share with you what I (think) I know.
Did you have a duraplasty? Some people do not get enough relief from just a bony decompression. The dura patch creates more space.
Did you get a plate to the back of your skull? Some people have intense growth of scar tissue at the surgery site, this tisdue binds down into the area of removed skull negating the whole purpose of making a bigger space.
Another biggie is the possibility of CRANIO cervical instability. Many Chiarians have CCI and it is believed to be a cause of decompression failure. CCI symptoms mimic Chiari symptoms- the spinal cord and medulla get bent and stretched each time the neck moves. If a person has CCI and it doesn't corrected during decompression surgery, symptoms will persist and even become worse. CCI is very common in people who have Ehlers Danlos Syndrome, or some type of hypermobility syndrome, and guess what, EDS/hypermobility is very common among chiarians.
Google the Brighton Criteria and Beighton a Criteria to get an idea of how hypermobility is disgnosed
Watch this video:
cSFinfo.org
Videos
Metropolitan area
CCI and Chiari videos/complex Chiari patient videos
Every Chiari person should be screened for CCI. Finding an NS who actually screens for it is tough- not NSs are aware of the connection between CCI and Chiari. The treatment for CCI is a cranio-cervical fusion.
The NSs who I am aware of screen for and fix CCI are:
Fraser Henderson, MD
Sandhu, georgetown U,MD
Patel, SC
Theodore, AZ
Rosner, NC
Trumble, FL
Possibly Frim, IL
Another popular condition with us is dysautonomia. There several different types, POTS is a very common type with us. It causes heart palpitations, sweating, nausea, syncope, headache, and many others. Dysautonomia can arise from brain stem distress and vagus nerve damage- it's a deregulation of the autonomic nervous system. There is medication for this condition!
I only received the plate on the on my skull, no duraplasty. Thank you so much for all this information I will begin reading and digesting this information you have given me!
hey im dylan its nice to meet you. you said that you had a decompression thats a great start for the tonsil but do you have hydrocephalus (water on the brain) that might also be the problem do you have a shunt by anychance?
your name dolphus made me ask cuz people with hydrocephalus our skulls resemble a dolphins skull
if you have a shunt it might be malfunctioning causing you this pain
Thank you for your advice and your words they mean much to me!
Rebecca said:
She gave you great info. I just wanted to second. Really check on the CCI stuff. Sometimes you can look at your own MRI and get a good idea of whether you need to question about it. Many surgeons for Chiari do not recognize the importance of the odontoid, clivo axil angle, etc. Many decompressions fail because this issue is not addressed.
Good luck and please keep us posted. You are so young! I hope you get all of this worked out soon!
Hello, Dylan the pleasure is mine. I do not have shunt to my knowledge or hydrocephalus, I will also look into this, I appreciate your time and words thank you
DylanAesthetic said:
hey im dylan its nice to meet you. you said that you had a decompression thats a great start for the tonsil but do you have hydrocephalus (water on the brain) that might also be the problem do you have a shunt by anychance?
your name dolphus made me ask cuz people with hydrocephalus our skulls resemble a dolphins skull
if you have a shunt it might be malfunctioning causing you this pain