Hi All, I’m new here and haven’t had much chance to thoroughly look over the site. Basically I was diagnosed a little over 5 years ago (by accident) and have never followed up. I think I am having symptoms consistent with Chiari 1. I’m going to list out my symptoms and please tell me honestly if they could be related or if they are completely unrelated. Symptoms- frequent numbness in hands, pins and needles too. Seems like my arms (and legs) fall asleep quickly these days. Headaches, neck ache (not stabbing, kind of like a stiff neck feeling), I can’t remember anything- I’m serious. I forget words and I even just recently forgot a face of my friends husband. It did come to me but it took a minute. I knew that I knew the person but I couldn’t place him. my arms seem very weak. For example, I have to prop my arms to blow dry my hair and even holding this phone while I type. My hands feel tight or even like they are bloated almost every day. It doesn’t last all day but I would say a majority of the day. My right leg… Hard to explain but it’s like whenever I transition from sitting/lying or standing- it ‘achs’ from about the side very top of my thigh (maybe even mid *bottom area’) down my leg to about my calf. A weird thing also is sometimes my feet and hands but mainly feet start itching uncontrollably. There is no rash or hives and its not related to any product or fabric. I usually end up sitting on the tub and running my feet under hot water. This relieves the itching. I get this burning sensation at the base and kind of to the left of my neck/shoulder area and not often but noticeably enough, I get a shooting, kind of electric shock feeling that goes from my shoulder (by my neck) and shoots down. It happens really quick, only lasts a second or two.
Anyway, some of these things have been going on forever but many seem new over the past year. The neck ache has only started in the last few months.
I also wanted to add that I do have the difficulty swallowing thing which I fairly new but it’s not all the time and none of my symptoms are dibilitating but they are beginning to be more and more noticeable.
How are you? A bit overwhelmed? The one thing, and this is what I think, Chiari is consistent with is it's inconsistent. Crazy huh? What I mean is the symptoms vary from person to person and how far your herniation is doesn't determine what your symptoms are like. For example they won't even say I have Chiari and I'm miserable, my daughter who they won't say has Chiari has a 5mm herniation and she's just fine. Well, except for driving me crazy! That's what teenager are for though! Your symptoms do sound like they are related to Chiari. When your leg is bugging you does it feel like it's about to cramp up? That's the only way I can describe the backside of my calves. Also are you taking any medication at all, the painkillers for me are almost as bad as the pain. The numbness of the hand(s) for me just recently started but is also a symptom of Chiari. The best site I found for info a friend told me about. Conquerchiari.org. What I liked most is it pointed out how different Chiari can be from person to person. If it has been five years since you've seen anyone about Chiari? I would suggest that you have a few things done, also the swallowing is another symptom. I would either go back to who you were seeing, if that isn't possible or you don't feel they were a good fit, on the top of the page (you may need to scroll to the left) there is a list of Doctors. What is great about these is they have been recommended by people here. But! Just because one doctor was great for someone else doesn't necessarily mean they are a great fit for you. Make sure you find one that you feel comfortable with and one that you feel is doing what is best for you. Yeah, I've had a few bad Doctors, call me paranoid, my family does. :) Anyway, I would also suggest getting another MRI, head to lower back, also a CINE MRI (CINE rhymes with renee to avoid further embarrassment yup I mispronounced it and someone got made fun of) in my defense I was not there when they laughed at her, so I can't really be held responsible for her actions! :) What the CINE MRI does that is different from the regular MRI is it's more like a movie. Sorry had to step away my cat just brought me her bag of treats, I've never had a cat like her, but she's pretty freaking awesome! Anywoo, so the CINE MRI shows if there is any problems with your CSF flow. (Cerebrospinal fluid) Having all of these done will help in diagnosing if you have other things that sometimes present with Chiari. If your Neurosurgeon is a Chiari expert he will most likely order these but I thought you should know. I didn't have a clue but thanks to many wonderful people here I've learned quite a bit in a few months which as you know is pretty impressive for us! I too can not find words, I've had entire conversations but don't remember them. I didn't see anything that you listed that doesn't' fit with Chiari. If I were you I would definitely get newer exams to see if anything has changed. Please let me know if there is anymore questions that you have? Really, I'm not too crazy. :) Also let us know how you're doing, like after the visit etc. Good luck, I hope that you get answers quickly. I'm also going to go back in, my symptoms have changed significantly in two months and I don't know what that means.