Welcome to the world of Chiari! It is a very confusing thing and until symptoms are really crazy they will still ask you if you want this surgery. I had symptoms that were driving me crazy and they did tell me it would help BUT I still had to choose surgery. It is kind of weird. Now I have a complication causing problems and even though they tell me again yes, the repair will help and should get rid of the problems, I still have to choose the surgery again. If things are bugging you enough and you find a Dr. that believes you will benefit from surgery you will still be faced with the choice and will have to figure out if your symptoms bug you enough to want to try and give this surgery a try. Even the surgery does not clear up issues for everyone and there can be complications. I am a good example, I get to go and do it again because of a leak that did not repair itself. Might have made me think even more if I knew I would have to do this twice. You really can't know though and just have to wait until you are ready! I think most people in here looking for surgery are looking because it is to a point where it makes their quality of life lower. I could not laugh without head pain and could not imagine a life of that! Chiari is confusing and a bit spooky because you don't know how and if it will progress. Just keep learning and find a Doctor that will listen and help you along the way. Good luck with your apts. For me the NL was a waste of time, the NS is much more informed about Chiari.
zygy2 said it well...it's up to you. I have not had surgery and am still questioning whether or not I would if given the choice. One thing that I have read elsewhere on this forum though is that nerve issues should raise a big red flag. If you're just having headaches...that will likely go away after surgery. Nerve damage however may not. I would think the twitching could be a nerve thing...not my area of expertise though.
Your NS should thoroughly check out your spine via MRIs, including looking for a related issue called a syrinx. Use your own judgement plus information you can gather from here to determine if your doctors are being thorough enough. You will find threads that list good questions to ask a NS and so on.
Hi and welcome to the Chiari forum.
Having chiari does not mean u r a surgical candidate...and yes u may still have symptoms that r diff to deal with as most do not respond to meds.
What is important is that u have further testing to see how the chiari is affecting ur over all health...u may not consider some issues symptoms of chiari when they could in fact be just that....find out via a CINE MRI if u have a CSF obstruction, overcrowding,and get MRI's of the thoracic and lumbar areas to rule out a syrinx and tethered cord...u also want to rule out sleep apnea, ICP, Ehlers-danlos,and disk issues.
The best thing u can do now is get the testing and let a well experienced specialist in chiari help guide u as to what u may need...if ur chiari symptoms and the effects of the chiari r mild and u do not have an obstruction and a syrinx, then the Drs may choose to monitor ur chiari....keep a journal of symptoms and let ur Dr know of new ones asap.
Thanks for your responses. They were insightful, I did the MRI of both the Spine and Brain and the MRI Neuro physician indicated that there was no syrinx or any obvious type of damage, or blockage based on the scans. Of course, I am getting a few opinions on these images from the NS and Neurologist. I will ask to see if I can get a CINE MRI and see if that could provide more clarity.
MY SON AT THE AGE OF 10 HAD CHIARI MALFORMATION WTIH SYRINGOMELIA SURGERY. HE WAS A HAPPY KID BEFORE THIS SURGERY. NOW MY SON HAS A SEIZURE DESORDER TAKES 3 DIFFERENT TYPES OF MEDS FOR THAT. ALL THESE MEDS HAVE CAUSED MY SON TO HEAR VOICES,TINITIS,VERTIGO,HEADACHES DEPRESSED, HALLUCINATIONS. HIS HANDS TWITCH,HIS FACE,HE IS VERY SLOW,MEMORY LOSS,HEARING LOSS,SLOW SPEECH. AND NOW LIVES WITH MAJOR HEADACHES NUMBNESS OF RIGHT SIDE OF FACE WITH PAIN GOING DOWN HIS SHOULDER. AND HE IS CONSIDERED A 5150. MY SON WANTS TO DIE. NO NL,NS OR SPINE SPECIALIST CANT FIND THE HELP MY SON NEEDS. PLEASE HELP ME IM HIS MOTHER MY NAME IS MARGARITA LEDEZMA.
Hi and welcome to the Chiari forum.
I am so sorry ur DS has had ill effects of this surgery,we r all aware this is a possibility that this can happen with or with out surgery, and without surgery ur DS could be far worse then he is now.
Have u tried a true chiari specialist....I know once we have surgery we no longer r considered to have a "virgin" spine and only true chiari specialists will help, others will not.
U may have to travel to get to a Dr that is right for ur DS ...we do have a list of Drs, but u have to research all of them to find the right one for him and to make sure u have one that treats pediatrics...
Know u r not alone...ask questions we r here to help