I have a 5mm CM 1, and have been told it is nothing. Literally had a Neurologist and a Neurosurgeon say it is nothing. What doctor specializes in CM's. Should I ask for a Cine MRI( jeez this would be my fourth MRI) What would that show(fluid buildup/blockage?) Would that cause my "non" symptoms? Any one else been told it's nothing but it turned out to be SOMETHING....and if it was something what was it?
Kinda confused here. I am not well and trying to find the cause of my "problems" and then trying to fix them.......
In the past doctors consided chiari to be anything more than 5mm. That criteria is now supposed to be outdated because there seems to be little correlation between symptoms and size of herniation. Mine is either 8 or 10mm depending on which MRI report you look at and I've had doctors tell me it's impossible that it is causing issues. Basically most doctors are clueless. Try to find a specialist and try to get a CINE to see if your flow is blocked. If it is then you know this is causing your troubles. If you tell where you are from someone will probably have a recommendation for a NS!
Thanks, I am in NY outside the city. I have been to two neurosurgeons and a neurologist already. I even went to see an allergy specialist AND an orthopedic surgeon about my neck/back pain to see if that was the cause. (ENT on Friday)
He and my allergist were shocked at the flip attitude of the neuros. with the "its nothing" attitude and a wait and see for my brain cyst/tumor.
I will check out the link,thanks. It gives me a starting point.
Let the Neurosurgeon and Neurologist feel your pain and then tell you it's nothing! I have had chronic symptoms for years and thought it was allergies, inner ear problems and neck problems...or just going crazy! Thanks to my GP who sent me for a Brain MRI instead of to the ENT, Orthopedic or allergist found out I have a 7mm Chiari Malfunction (all other tests...CT, hormone testing, blood work, upper GI...came back completly normal). She contacted a wonderful Neurosurgeon in my area who feels that decompression surgery would definately benefit me. He told me that many Neurosurgeons would rather let people stay in pain or send them to a pain specialist because Chiari is such a "subjective" syndrome...meaning it's hard for them to tell exactly what symptoms are coming from Chiari and more than not, they are willing to allow patients to remain in pain than to do surgery because of lack of experience or an unwillingness to refer them on to someone who has the experience to alleviate the problem.
My advice to you my Chiarian friend...find an experienced Neurosurgeon who won't brush you off and doesn't have an ego problem!
Greater than 5 MM is the standard at this time. Most Neurosurgeons go with the symptoms you are having. CM0 d.oesn't have a herniation at all but serious symptoms. You have to have a experienced Neurosurgeon with CM All a CINE MRI shows if you have a CFS blockage & the degree of blockage. I think you need a second opinion.
I was just recently told my herniation is 10mm. I have no clue of thats too big or small. Im experiencing over 10 diffeent symptoms everyday, a lot of times all at once so it can’t be too good. I really hope you find the right neurosurgen. I was also told by the neurologist who diagnosed me that I didn’t need a Ns and out was no big deal, quickly adopted seeing her and went on the search myself with the help of the nurse practishioner signed to my case by my jobs insurance. Finally found one and it turned out to be a real biggy cause I’m suffering chronic pain never under level 7 all day. My ns and I are discussing surgery next visit on the 15th. So please always go with your gut. If you feel like it’s a big deal go with it.
Have not been here for awhile ....I think I just gave up because no doctors seem to know or act as if my Cm is not the issue. I was referred to a headache specialist. Come ON!!!!!!!
I didn't even bother to go. Feel like I hit a dead end with both my medical problems. Any one know a doctor in NY or near NY that can help?
Or do I live with these symptoms and pain for the rest of my life ( if it is a cancerous tumor who knows how long that will be)
There are two excellent books, one by Dr.Oro and the other is entitled “conquering Chiari.” my first NS must have been up to date on the most recent research… Which states that size of herniation is really irrelevant in determining symptomatic versus non-symptomatic. This is also highlighted in both of the above books. I never knew that, and neither did my second neurosurgeon…
Check those books out though. I found then to be helpful.
Those are both excellent books. I highly recommend them both. Thanks Brandon....Great Post !!!
Brandon said:
There are two excellent books, one by Dr.Oro and the other is entitled "conquering Chiari." my first NS must have been up to date on the most recent research... Which states that size of herniation is really irrelevant in determining symptomatic versus non-symptomatic. This is also highlighted in both of the above books. I never knew that, and neither did my second neurosurgeon.... :(
Check those books out though. I found then to be helpful.
IM RIGHT THERE WITH YOU, BUT WITHOUT A DOUBT, AFTER READING & RESEARCHING WITH CHIARI, I KNOW IN MY HEART THIS IS THE SOURCE OF ALL MY PROBLEMS. AFTER SUFFERING MY WHOLE LIFE.. .FINALLY I FEEL LIKE I HAVE AN ANSWER THAT MAKES SENSE. YOU NEED TO DO LIKE I DID... FIRE YOUR NERO & FIND A CM SPECIALIST, I CHOSE DR. MICHAEL ROSNER IN ASHVILLE, NC, IM SCHEDULED TO SEE HIM DEC 13, IT FEELS SO FAR AWAY, BUT JUST KNOWING I WILL SOON TALK TO SOMEONE WHO UNDERSTANDS MY STRUGGLES & IS WILLING TO HELP. I AM ALSO A CM1 & MY NEURO DID NOT THINK MY CM IS RELATED TO ALL MY SYMPTOMS & PROBLEMS... TOO MANY TO LIST... SKIP THE DR, SKIP THE NERUO & MAKE A APPT WITH A CM SPECIALIST, MAKE SURE YOU READ EVERYTHING ON THEM.... GOOD LUCK.
I would love to fire my NS and Neurologist. I just have to find a specialist for my medical problems. I will definitely look into a CM specialist. Thank you so much for the response. when it rains it pours huh? i have been so concerned with my brain cyst/tumor I forget about my CM,,,,, although she likes to remind me she is there!
