I just found out that the measurement on my Chiari is at 5MM. I suffer from horrible symptoms. I have heard of people having as much as 30MM. Is there a correlation between the number and the amount of pain or symptoms you have? I can't imagine feeling much worse...
I am 25mm. I primarily suffer from head/neck pain more often than not at the 8 or 9 level (and have a high pain tolerance). I was diagnosed Feb 29 last year and since the end of last summer I also started to suffer from tingling/numbness/weakness of the hands and feet, slurring words, forgetting words and a general fog. I have always been a sleeper but now need sleep more than ever. I tire easily. I don’t have any problems sleeping like some chiarians I just feel like no matter how much I sleep I am still tired.
I have surgery on Monday.
I believe TracyZ just posted a link to info on correlation between size and symptoms - there isn’t one! You can search for it and take a look.
How are you managing your symptoms?
Mine is herniated 30mm. When I was about 12 my NL said I have a “small” chiari. Wasn’t symptomatic until in my late 20’s I went to the chiropractor and further herniated it. I had the headaches whenever straining or doing any thing, couldnt sleep due to pain, almost blacking out, tingling, face pain. I was decompressed 4.5 years ago and haven’t had the classic headaches since but I still have some tingling, developed POTs, fatigue and other odd things that may or may not be from chiari. Very glad I had surgery though. I just hope I never have to do it again.
Okay that is very good info. I have the same symptoms as you but I am at a 5MM. I was curious. Glad to have gotten that answer.
I am still waiting to see another specialist. My surgeon is worried about the hyper-mobility in my joints and muscles. He said that if I have a syndrome like marphans that I cannot have surgery, at least by him, because it could end in disaster. I am hopefully. Trying to keep faith that this will all work out. I feel like surgery is my only way out. The only way I will feel like a normal person again.
Mine was 7mm before surgery. My symptoms were occipital headaches, hearing loss, neck and left arm pain, nystagmus, numbness in my left hand, fatigue.
Mine was 11mm. I had the blurry vision, vertigo, ringing in my ears, my eyes also felt like they were running in circles some times, headaches, the bending over kind of ice pick in my head type of headaches, neck pain (which is what originally went to the neurologist for), forgetting words, dizziness, I even had this thing happen with my left eye where it would felt like I couldn't even see out of it. I would have to pull over while driving sometimes.
I have also read that there is no correlation between the size of the herniation and the symptoms. I am only 7 mo post op and most of the symptoms are still here. Hoping and praying with time they go away.
Like most of us here my condition went undiagnosed for years. By the time I found doctors who knew what was happening to me my herniation was 22 mm. My neurosurgeon said I had only a few months to live without the surgery, but he also said that it wasn’t the depth but the position or points of compression (where the cerebellum is being squished) that affected my symptoms. I had almost the full checklist of symptoms. A lot of them have gotten better but most of them are now permanent and I just have to cope. But at least I’m not going to die now! Thats pretty awesome.
MRI shows 6-8 mm symptoms memory loss fog gait balance vision hearing headache numbness tingling loss of feeling neck pain syrinx thorasic spinal stenosis when doing lumbar puncture they couldn’t get the fluid they need because of chairi pushing on spinal cord (per neuro radiologist ) forgetful to many symptoms to list. Boils down to this sucks lol hope you are okay the worst experience of this has been besides pain obviously is the asshole doctors who want to dx you and be the one to find the "mystery illness " and ignore the obvious. I have learned some people REALLY are book smart and have NOOOO common sense lol
Awesome! Thank you for the responses! Okay, so I was diagnosed only 2 months after I started seeing a doctor for my symptoms. Here is another question:
If I am at 5MM now, and my Chiari goes untreated, will it continue to get worse? Will it continue to herniate further?
These are awesome questions!!!
What was more important for me was the amount of CSF that was being restricted. The amount was severe enough to warrant the surgery more so than the amount of the herniation.
Thanks, I'm a talker. I like to ask questions and get other people talking.
These are awesome questions!!!!
In 2010 my MRI showed 7MM. I was being evaluated for MS though. The neuro that told me I had Chiari never said I should keep an eye on this. At the time I also was diagnosed with a schwannoma in my spine (T5) and all the neuro's I saw -- total of 3, 2 MS specialists and a regular neuro, were all concerned about the schwannoma. I can't remember if the only MRI that showed Chiari was the one in Buffalo when I was a study patient. I called the neuro office that I had all my MRI's done and asked for copies and the reports but of course it has been over a week and I have not received them. I am very interested to see if this all started after my lumbar puncture or if it was just missed on the other MRI's.
At this time I have headaches up the back of my head -- intermittantly all day. I also have ringing in my ears. The right one so loud that I have hearing loss. Went to an ENT and was told to get a hearing aid.
I was chalking the ringing up to MS -- didn't think about the Chiari until my recent MRI that the ENT ordered. She called me and said "are you aware that you have Chiari". Hit me like a ton of bricks. I was aware but conveniently forgot. I guess when I was told the MS diagnosis, ON that left me with blurred vision in my left eye, tumor in my spine , and chiari I just had to push one of those out of my mind.
Wow am I rambling. I am really interested to see what the chiari specialist has to say tomorrow. His name is Dr. Bejjani from Pittsburgh, PA. Has anyone had any experience with him?
My daughter's CM is 13 mm. Her NS does A LOT of decompressions here in the Pacific Northwest. He's the go-to guy. In two years of dealing with endless docs and therapists, he's currently the ONLY one we trust and his knowledge seems to be pretty spot on. He says that he'll have patients whose "smaller" CM cause endless issues while some with seemingly "worse" ones cause no problems at all. He looks at the big picture, not just amount of herniation.
I have 3mm and dysautonomia/POTS and have not had a straight answer on Chiari.
Mine is 6.7 and have an abundant amount of symptoms, newest one being hoarsness and difficulty in swallowing and feeling of well kinda sounding and being in a tin can(I know weird). I am concerned that my size may have increased as my symptoms most certainly have. Wishing you relief and comfort..
When I was diagnosed 13 years ago, my herniation was 4 mm and I had zero symptoms so my doctor decided not to pursue treatment.
By the time I was decompressed 2 months ago, my herniation was at 20 mm. I know they say that size doesn't matter, but for me the bigger the herniation, the more restricted the CSF flow, the worse the symptoms.
I have had the swallowing problem all of my life. I just thought it was normal and I never said anything. Lately mine has gotten a lot worse. Some days it feels almost impossible to eat. I feel like I always have something stuck in my throat. I even have a hard time swallowing liquids!
i am 13mm and haveing surgery on the 27th of feb, i have all the classic symptoms