I really need help- does this sound like chiari?
Posted , 4 users are following.
These are my symptoms:
-off-balance feeling. Not necessarily dizzy, but unsteady and "off"
-very weird feeling in back of head (base of skull right above neck)
-sharp shooting pains at the back of my head on both sides. Only last about a couple seconds, but will occur over and over again in the same spots.
-eye pain. Feels like the tops of my eyes hurt. Hurts to move my eyes in any direction. Kind of feels like a strain.
-sharp shooting pains in ears (on and off)
-mild headaches. on and off.
-pulsatile tinnitis.
-occasional ear fullness in one ear.
-head fills with pressure when i bend forward, cough too hard, or sometimes even with little movements like turning over in bed.
-face randomly gets hot.
-temple pain
-fatigue
-hearing my heartbeat in the back of my head (not my ears) accompanied by pulsing/throbbing when this happens. Usually aftermovement (like turning over in bed).
These are my symptoms and I'm extremely worried. This has been ongoing and progressive for 2 months now, and it all started after I took a couple pills of accutane (not sure about definitive link). I also have a neurological disorder called visual snow. I know I need an MRI to be sure, but I'll take any input I can get at the moment.
0 likes, 9 replies
Linleel aman00351
Posted
Evella4 aman00351
Posted
First I am sorry you are having these symptoms. My advice to you is to see a doctor and have a diagnosis confirmed. An MRI of the Brain will confirm Chiari Malformation. The only reason why a MRI was taken of my brain was because I thought I was having a stroke. Please talk to your doctor and and explain your symptoms.
aman00351 Evella4
Posted
Thank you for your comment
I've been talking to my doctor about my symptoms and he seems to brush it offf as migraines or vertigo. I had a CT scan and it came up clear. This definitely does not feel like a migraine or vertigo, it's hard to get a doctor to take me seriously. I'm thinking it's either intracranial pressure or chiari
Linleel aman00351
Posted
CT scan won't necessarily catch it. Request an MRI. Be really pushy. IF your doctor won't cooperate, go to a different doctor. Usually they are happy to spend your insurance's money. If you can't get a satisfactory response, go ABOVE your doctor's head. Ask for the Manager of all the Doctors. Good Luck!!
aman00351 Linleel
Posted
Evella4 aman00351
Posted
Aman,
I don't know if it would be a good good idea to ask your doctor to check for a Chiari. You can just inform your doctor you are having a lot of symptoms and that you think you shouldn't get and MRI done of your brain to rule out any diseases. I didn't know anything about Chiari until my doctor received the results of my MRI and I didnt just have Chiari, I have other issues with my brain as well. This is all the advice I can give you to get started and I really think you need to address your symptoms with a doctor or be referred to a nephrologist. Hang in there. It's going to take time and lots of patience.
aman00351 Evella4
Posted
Okay I'll keep that in mind, the only reason why I wanted to ask my doctor to check for chiari is because I heard sometimes things can be missed in MRI's and CT's scans. I also talked to a neurologist and he referred me to get a lumber puncture to rule out some things but I hear that can be dangerous if I have chiari. Thanks for the input <3
Jenaa aman00351
Posted
I have had a lumbar puncture post diagnosis, after it was decided that my chiari was not causing any instructions.
Speak to the neurologist about your concerns. They are valid points!
Linleel aman00351
Posted
If you have it, it should show up on an MRI. MRI's aren't totally accurate re: the length of the tonsils and FYI: there are two tonsils, one on the each side. The first Neurosurgeon I saw never mentioned that. My first MRI showed a 7cm tonsil and a later Cervical MRI said it was 4-5. Found out after my CINE MRI that I have two- one was 8 cm and other was 4-5. CSF flow was blocked on the side where the tonsil was longer. When the canal is blocked, the tonsil keeps getting hammered as fluid keeps pulsing trying to get through.