Hi. I’m 25. I just recently got diagnosed. Had no idea this even existed (disorder, illness, ?). I have had fairly common headaches for years, but never really thought much of it. It would start at the back of my head and usually end up throbbing behind my right eye. In the last couple months it got a lot worse. Finally told my Dr. about it and he gave me a pain med and sent me for an MRI. I was supposed to do a follow up a month after getting the MRI done, but I got a call and had to go in early. So I was really worried about it.
I have a 7mm CM. I dont have any Dr. who is familiar with it yet (I’m hoping my upcoming Neurologist isnt as clueless as my GP). So far I’m hoping it wont be something major.
Aside from the headaches, I am most worried about if it is affecting my vision since over the last few months my sight has gotten progressively more blurry. I can deal with headaches and dizziness and being clumsy and even pain meds that make me nauseous.
Your docs may not be as clueless as you think. Its just that Chiari is not uncommon. What is uncommon is twhen what is called Type 1 Chiari causes a problem. (this doesn’t include Syringomyelia which is a condition characterized by a fluid-filled cavity or cyst known as a syrinx that forms within the spinal cord that occurs occasionally with Type 1 Chiari) To most Docs, its like saying freckles cause folks to wet the bed.
Sadly what happened and interestingly enough almost exclusively in the Consumer driven USA medical community is we had pop almost overnight a whole new industry of Chiari “Specialists and clinics” who were offering to cure all manner of ailments and headaches THEY said were caused by the Chiari.
This frankly mystified the regular medical community that suddenly the single most common “anomaly” found on MRI required BRAIN SURGERY (they still are mystified) There became a few pretty well known Specialist in the area the best known in New York who wasn’t even a qualified Neuro Surgeon. They even adapted a cardiac study called the Cine MRI to prove the problems caused by Chiaris. (of course only the "specialists who had a special knowledge used the procedure, some even bought their own MRI machine because the real hospitals and medical centers wouldn’t do it (for that purpose)
Folks going on the internet were bombasted with all things Chiari. Then a funny thing started happening A few of these specialists lost their medical licenses, a couple went to prison, others started to pay out millions in law suits. They stared coming up with all kinds of excuses as to why a very large portion of their surgical patients didn’t get better after the “chiari” was gone. EDS, Spinal Instability, Eagle Syndrome etc. are and were on the list The clinics started closing the specialists started retiring and the industry is a shadow of itself. (keep in mind a lot of these guys also collected their fees up front and didn’t take common insurance many were making millions in fact two of them in New York State were the two highest compensated surgeons in the USA.
That is not to say there isn’t or can’t be problems because of Chiari, but treatment has evolved tremendously as has diagnoses of the conditions caused by it. The fact is it is rarely the Chiari. A good doctor will talk less about the chiari and more about your symptoms. As you read through this site you will find an awful lot of folk who have been treated for Chiari and are still having problems some very severe.
There frankly is not a SIMPLER neurological surgery than posterior fossa decompression Its is nothing more than the opening and closing for normal brain surgery in the area. The sew a patch into the dura, that they cut out. If your problem was the Chiari, its gone and you should be cured. Pretty much its a mesh hernia repair among the first surgeries residents do.
So if your doc seems slow or “isn’t getting it” it may be that he has spent more time studying the medical journals than the internet. IF it is a chiari they will figure it out. But if it isn’t, wouldn’t you prefer they figure that out too? And if they can’t figure it all out wouldn’t it be better they tell you that as well and try to best treat your symptoms without cutting a massive hole in your head on a hunch???
I’m new to this too, diagnosed Jan 2017. I am 54 yrs old. I’ve been suffering since a kid. Had seizures, fainting, stingers growing up. Migraines started at about 30 yrs old. My vision is blurry, the floaters are awful, and I have the jerky eye movement too. Just had an eye exam, my optical nerve is good! That’s awesome, because my brain stem has a bulge in it and my CSF is blocked which can affect vision. I can drive a car, do housework, enjoy my 4 kids and 5 grandkids, I am blessed. I hope you are too.
Have you ever had a concussion or whiplash? I have had 2 concussions and 2 car accidents with whiplash. I have read that many people with the herniations have had head injuries.
I don’t know about concussions but I have had whiplash before from being a passsenger in a car accident. And I really hope I don’t end up with a hole in my head. Even the idea gives me nightmares.