When was the last time you talked to your doctor about this and and how long ago was your last MRI?
My guess is the cyst, which makes the crowding. You can always upload your mri, maybe we could see something?
For years my MRI had been noted as "low lying cerebellar tonsils". In 2013 the Radiologist said the tonsils are now at a level to be known as CM. However, another MD said low lying is CM. So, it depends on who is reading the MRI & what school of thought they belong to. There are even some who poo-poo they notion of problems from a "supposed CM". You can always ask for a re-read and a comparison to previous films & you can also take your films for an independent read, but doing that might cost you.
The biggest problem is each Dr is using different terms to describe Chiari....it is not the tonsils or length of the herniation....
Some will say a herniation of 5 mm or more is Chiari...but Chiari is the malformation of the skull...and bcuz the area is too small to contain the cerebral tonsils they herniate....
Low lying tonsils can occur from blunt force trauma with out the skull being small so it is not Chiari HOWEVER the symptoms and treatments are the same.
It is very important to find a true Chiari specialist regardless of which it is congenital or acquired....acquired being low lying tonsils.....
Nothing written on the reports at all. But right from first cat scan they found cyst so wondered if it could be missed by radiologist and neurosurgeon who didn't believe cysts cause problems for adults. So wondered if it could have been missed. The cyst was not reported in a cat scan 8 years ago even though it was there. Main reason I wonder is all seem linked but not sure. The mri done 4 months ago.
Just to clear confusion from last comment, the scan 8 years ago didn't mention the cyst. But the one just over 4 months ago did.
It's pictures not a CD so Don't know if I can. I've been put on valium for muscle relaxant in case my neck is in spasm because of degeneratiion but so far muscles are a little less tight, but the headache is still exactly the same. When I googled the cyst and the degeneratiion of discs together it bought up the chiari a few times. So it's really only wondering if it could be missed if they are focused on cyst already found.
Both, chiari and cysts are causing bad posture due to the fact that the brain "is seeking" for more space. Bad posture can be caused by disc bulging. Cysts can cause chiari by making crowd therefore the brain into the spinal canal. It's really all connected as you can see.
I had my first MRI tripled checked if not checked out by four different doctors before I accepted it. And now that I have my second MRIs and test done its hard for me to swallow because I'm waiting one a second opinion from my Dr that i choose as my specialist in Ohio But we will see. The waiting is killing me..
I have looked up chiari in Australia in Queensland and there is one Dr listed as a chiari doctor. My only fear is he is in the same practice as the neurosurgeon who told me he can guarantee my arachnoid cyst wasn't causing my headache and he can guarantee I don't need surgery for it because those sort of cysts don't cause problems in Adults. So the doctor who is the chiari doctor in my area is in the same surgery as the one who doesn't even believe cysts cause problems. Makes me nervous to see him to check for that. But after looking up Chiari I notice symptoms that I just thought were me being clumsy. And others I thought were from my epilepsy but could be from chiari. So would it be reasonable to try to get radiologists to review the mri first do you guys think.
Hi....having the MRI reviewed again is never a bad idea....but you may also want to travel a little to get to Drs that you may feel more comfortable with.'
Did you look at the list we have for Australia ? It is not a large list and I am not sure if the Dr you were going to see is on our list....so do look and let us know as we do need to grow this list.....
But know there are options and many of us do have to travel to get to the right Dr for us,...
Like I said I had my checked four different times. One was a family member who is a NS who retired but knows so much about Chiari because his daughter had it as well. So I'm glad I had his opinion this whole time as well as going to my drs appointments with me. With his education on top of all the support from this lloving community I know I had what most people were looking for in a doctor. Though I had to travel to get to him it was well worth it all to me. If I knew i had this 12 years ago i would of been on top of it as much as I could.
You do research, travel if you must as most of us do have to travel to find a great doctor that fits us. Even if you don't feel comfortable with this ddoctor you know he is not the one for you. Move one until you feel confident not only in your doctor but that he knows what he is doing as well. Then that is when you know you found your doctor. Just know we are here for you.
Sounds like its worth getting it checked, would just a radiologist be the way to go since nothing mentioned so far. Or I also have access to a gp who is a retired neurosurgeon would he be a better option. I at least want to see what my gp thinks hopefully she doesn't think it's not worth checking because with the arachnoid cyst, cervical spine problems sleep apnea and headache that gets worse with sneezing and coughing think there is enough to at least check.
I went the route of having mine rechecked for the simple reason of having gone through so many test and so many drs writing me off as crazy from my late teens that iI couldn't trust the word from just one. My uncle also noticed something the other three never mentioned to me. That is that my brain stem is not straight. It had a kink in it. Known as basilar invagination. Scared to say the least but I'm glad someone did notice it. Since I have a hard time trusting medical professionals I'm glad I have someone in my family who understand this all. I would say go for it. It won't hurt. Its better to know now then not know ever. So have her look at them. Maybe she will she something the other missed. I feel you on your headaches. I suffer from them for 2.5 weeks every month. But i am hopeful.
Went to GO today she is going to speak to radiologist to see if they have taken from right angles that it can be checked. It will be on there computer so they will be able to look. She is also going to ask the gp who is the retired neurosurgeon who has looked at my mri. I go back in a week so will find out the results of her inquiries. She thinks it would have been noticed but at least she is willing to ask the question.
That is great !!! I hope you get answers...keep us posted : )
Well the gp phoned the radiologist who did my reports, he said there was no chiari malformation and my head not under any pressure from the mri. Sure feels like pressure anyway still no answers for headache been constant for 4 months. She asked if I want to see a private neurologist as I was put on category three a two year wait through hospital. So going to let her know in a couple of weeks. Gives a couple more physio sessions on my neck. But physio doesn't think it's my neck. Just frustrating I have the cyst but no one thinks it is that . What do you guys think would a neurologist be better to totally rule out chiari malformation. Or is radiologist most probably right.
Thanks for everyone's input and advice up to now and from my last comment I just put up.
I would want a true Chiari specialist to review the MRI....and I would not go by a radiologists opinion.....JMHO
Do you have copies of your MRI? IF so some of the NS's here in the states will review them for a nominal fee....it may help you know what is going on, and they may be able to offer a consult with your Drs......
So hi Selma thanks I have the mri in large pictures not a cd so maybe I can get one. Do you know of any specialists in Brisbane Queensland Australia. Also if I did send to one in America would you have a idea of the approx cost. My gp. Thinks the radiologist would know because he did two of my mri's but think I would rather a specialist looked at them for either the chiari or for if the cyst is in fact causing my problems. The physio doesn't think my neck discs are to blame for the headache.
Sorry I have no idea what they might charge...they are all different and I have not had to do that, but others have and said it was either free or a very nominal fee.....
No, I have no idea where the Drs on the list (link posted above) are located and they are the only ones I am aware of....many of us here in the states have to travel distances to get to a true Chiari specialist too....and for me it was well worth it ....
Thanks Selma, I might try joining a Australia facebook group and see what information I can get.I will keep your suggestions about sending my pictures to a specialist over there a option. Thanks if I have to go with that option who do you suggest would be suitable to contact. Thanks Sally
I hope you keep us posted here too..,,and if you find a Dr please add them to our list for others from your Country....as we do get them here....
Know you are always welcome here <3