CM advise and answers. My story.
Posted , 4 users are following.
Hi i am a 21 year old female. I have recently just had an MRI scan as i was getting intense burning sensations in my head with eye pain and numbness and so on my head is also sore to touch,neck pain etc. My results came back clear yet i was told i had chiari malformations type 1 but my doctor didnt say much apart from he explained what it is. Tjey also saw a white mark on my scan but there was nothing at all to be worried about they said i was completely fine. And they will repeat the scan in a few months time. Im beimg refferd to a specialist in a few months to check over but other than that they said i am fine and nothing to worry about. He didnt say this was the cause of my pain and so He gave me 10mg of amitriptyline to try at night time to see if it eases my headaches/pain. He told me this was common and a lot of people have it. I should of asked more questions when i was there but i was just relieved at the time they didn't find anything to serious.. i feel like whatever it is thats causing my pain weather its CM or something else is taking over me im not the same anymore cant seem to cope as its been going on a while. My eyes and vision feel weird and i have had my eyes checked twice and they were fine. I've been like this a couple of months now and its taking its toll on me! Its so frustrating and i cannot cope. I just want to know does anyone think my pain is my CM? I am spose to go back to my doctors once i have given this medication a try. Its just with coming home i read up on this condition and reading the symptoms of it i have most of the symptoms. And with them telling me they found i had this on my mri scan im questioning why my doc didnt say much on the subject and if this could be the reason why... im just in limbo at the moment dont know were to put myself. Any advise or infomation or stories on this would be helpful and appreciated.
Thanks nikki.
2 likes, 3 replies
kimberlee_90115 nikki50547
Posted
Hi Nikki,
ABSOLUTELY YES!!! Chiari Malformation does cause pain & burning sensations & more.
Please please make an appointment with a neurosurgeon who specialises in chiari malformation. Not all neurosurgeons have dealt with chiari. It is so important that you see a specialist in chiari. It's not common, it's quite a rare brain condition (1 in every 1,000-1,500) & it has related conditions too.
Unfortunately there isn't much help out there, so it's a good idea to do some research. There are some good Facebook groups which are really helpful & I found them invaluable when I was first diagnosed as we are all in the same boat together.
I am on Facebook too "Kimberlee J Provan" feel free to contact me on fb, anytime, with any questions.
I was diagnosed 4 years ago & had decompression surgery in 2014.
"The Chiari Life" is a truly great Facebook group where there is help & advice available also.
I hope you're doing ok, but if you're not, please go back to your doc and get some pain relief! Don't suffer. You know your body better than anyone, don't be fobbed off!
It can all seem a bit daunting at the beginning, but for myself, I found "The Chiari Life" Facebook group a really helpful place to be able to chat to other chiari sufferers & get advice!
Take care of yourself
Love, Kimberlee xxxx
Stacey1118 nikki50547
Posted
Hello Nikki
My name is Stacey I'm 47 and was diagnosed with ACM when I was 30 I had all the symptoms you have as well as others I was falling down all the time and chocking on almost everything I tried to swallow I do believe you are having the issues you are from the CM I'm not a doctor but it's very similar to what I went thru. Regular primary care doctors do not know to much about this condition which is most likely why yours didn't say much my dr never noticed mine it was detected at the emergency room one night I felt like the back of my head was going to explode worst then any headache or migraine pain you could imagine it brjngs me to the floor unable to move when I get it I had my surgery 17 years ago I was give for many years until about 4 years ago my brain dropped even more and has for worse since I have spinal fluid leaking from my skull and I'm told it's too much of a risk to try and do any surgery I get a sensation as if I have a mouth full of pop rocks candy and you can actually hear the pooping I'm trying to get used to that. Everyone is diff some people have only a few minor symptoms some have serious symptoms I wish you the best and advise yoh stay calm until you see the specialist has to say it's usually nothing life threatening at the moment. Stacey
tahneeee nikki50547
Posted
Hi Nikki,
I only just found out I have chiari and also an extensive syrinx which is what is likely causing my symptoms- dizziness, tingling in arms and legs, loss of hot cold sensation in hands and my arms/shoulders feel heavy. My doctor wasn't that knowledgeable on it but she was wise enough to refer me to someone who was. My advice is find a doctor you can talk to and don't ever feel silly asking questions! Go see another neurologist who has more information and if you're not comfortable taking the pain medication, then don't. It's your body 🙂. It can be frustrating And scary just after diagnosis, so just take each dy as it comes & try not to google/stress yourself out too much.
I'm having the decompression surgery in about 8 weeks.
Hope my words help put you at ease a little bit. Xx from Australia.