This is my first day on here so bare with me pls! I was actually hopeful when they found a reason for my headaches and neck pain, now Im not so sure. I do not go to Drs but when my headaches were untouchable by otc meds and I started twitching and some studdering I decided I had better get this figured out! I had one appt with a neurosergeon that lasted about 2 minutes and he basically told me to stop my pain meds and get back to work. Needless to say when I left there I was so upset i wanted to give up completely. Now I have another appt tomorrow with a Dr that is more familiar with Chiari so I am hopeful. Anyway, since I didnt get to ask any ?s, I am glad I have you all to ask. Is the twitching normal for Chiari? What about studdering? I have read a lot of symtoms on the internet but havent seen much about this. I have no gag reflexes left either, im assuming this is all related but not sure. My pain is horrible...I related so much to a gal on here that said she feels guilty, less than, and worthless now. Thats exactly how I feel and its tearing me up! I look fine and I think its hard for others to understand how bad this feels. A good day is when my pain meds actually ease the pain, then I try to do everything I can and by evening I feel like Im dying. My family is very supportive and I know I am blessed but they are used to me being so active and independent that I think this hits them pretty hard. I feel hopeless at this point b/c my last appt the Dr. said my Chiari wasnt bad enough for surgery and go to work. I was a very hard worker and I know I cant do it now, its the worse feeling. I want a fast fix and am realizing that's not going to happen. Does everyones symtoms vary or can they tell for the MRI that I dont need surgery? I dont want surgery but I want to be my old self again so if my next Dr wont do surgery what are some things I can do to feel better? I dont like taking so many meds but I have to. Any suggestions would be grately appreciated!! Thank you and sorry for the rambling, its just nice to know you all know how I feel!
John go to the Discussion page and in the box that has the magnify glass put in symptoms list (very helpful). That should bring up a list that you can print off and then highlight or circle what pertains to you.
I don't have a gag reflex anymore either. I twitch but I think it is more so tremor in my arms and hands. I also before being put on Neurontin 3x a day I would get electrical zaps through my midsection and arms face and sometime tongue. I get really dizzy and sometimes drop to the ground because my legs give out.. (no stairs for me anymore I have to take the elevator at work) I can't remember words that are in my head but my mouth won't let them out. I don't stutter but I get mushy mouth. my words, they run together.. No more public speaking... It was small at first teh mush mouth.. forgetting what to say.. they came the zaps okay.. I better go in to see what was happening to me. My primary ordered an MRI right away so I was lucky that it was found quickly... but I was symptomatic as well and progressing fast/ To chicken for surgery.. not that the first 2 NS cared.. they didn't think that was my problem because my herniation wasn't big enough. 7.8mm. I don't have blocked CSF flow but it is diminished on both sides anterior (closest to the brain stem) and posterior (closest to the skull) - more so posterior. But not blocked.
Wish you the best of luck at the doctors. Education is the key for us. even if that means educating our own doctors.
Hi and a HUGE WELCOME!!!!!
I am happy your family is s o supportive.
I had a lot of twiching before my opertation. gone now for the most part. I had issues with getting my words out right..not so much stuttering but wordfinding...and here is a weird one...spelling,,,I COULD NOT SPELL!!!!!! IT became embarrassing. I personally, don't put anything past Chiari as far as Sx's go.
This is only my 2 cents...but that 1st NS you saw is a piece of work!!! Glad you are seeing another...let us know how you make out....don't give up hope....there is help out there, ok.???
Hi! I don't seem to have any issue with gag reflex right now (knocks on wood) but I have daily twitching and speech issues. Some days only a pinky will twitch, the next day it's my whole hand and on and on. My speech is difficult too. I definitely lose words, mumble sometimes and stumble over words. I too have seen one dr that dismissed all my sx's and told me to go on my way. I'm now trying to find a NS that has experience with Chiari to get an educated diagnosis. I hope you have way better luck with the new dr too!!!!
My 1st Neurosurgeon told me that my Chiari herniation and syrinx were too small to be causing me any symptoms/pain too. Frustrating…Isn’t it?! I also have to take a bunch of medication, which barely touches the pain. I wish those doctors could walk just one day in our shoes. I use to work 70 hours a week, take care of my Grandma, and I still had energy to have a life. Now…I only work 2 days a week and that takes everything I have. I feel useless and like I’m letting everybody down. This disease takes so much out of us. I don’t have gag reflex issues, but I do have a hard time getting the right words out. I also have periodic twitching, especially in my legs. I’m going to be seeing a Chiari specialist soon. I’m glad that you’re doing the same. So many doctors are clueless when it comes to Chiari. I’m glad you found this site:) It helps to know that you’re not alone. I look forward to getting to know you better:)
I haven't had any problems with the gag reflex, however I do twitch (my right eye lid more than anything) and it is soooo annoying! I never had any twitch problems before but they started right before diagnosis for me. After I was decompressed it has decreased; however, it still happens every now and then. Hope this helps, and btw this is a fabulous group of people to get to know! They have helped me considerably and I most definately consider each and every one of them my friends. Good luck!!!!
Thank you all so much for ur thoughts! I will let you all know how tomorrow goes, my fingers are crossed.
I know how you feel, I just went through the same thing. I wish that instead of saying "oh, it's nothing" that the docs would just admit they have no idea. Twitching and stuttering are definitely symptoms of Chiari, I have them too. Sometimes I'll just be talking and out of nowhere one word will come out really loud and stutter the rest of the sentence. It used to be kind of funny, like oops, brain fart. My whole body used to shake the bed at night but I fixed most of that with the right pillows and sleeping on my right side, one pillow between my knees/sometimes feet. I think you might find the Conquer Chiari book comforting/validating. You preview a large portion of that book for free on Amazon.com .
you aren't alone<3 be strong!
Yes I do the same thing! It’s funny how now when I look back I have had different symptoms for a long time before the pain n before I found out what I had. But the speech is definitely one of them. The blurting out words louder, stumbling over words, I never stuttered before now tho. My kids just always tell me…go ahead mom spit it out! I feel so stupid but where their concerned I just laugh with them trying to make this as easy as possible for them. I feel like I have everyone walking on eggshells most days bc I can’t handle the light and everything seems so much louder and annoying, I used to love the loud music n singing with my girls in the car, music was my life n now I absolutely can not have it up at all. I feel so bad, I used to do everything for my family, now I feel worthless n then to go to a dr. And get no validation what so ever…I felt like my husband then thought I was crazy! Hopefully today goes better n I get some information! Thank u for ur reply n I hope u have a good day! Diane
I know what u mean, I look at all the odd things tht have been wrong with me n now I can relate everyone of them to Chiari. It’s crazy, ppl have at times teased me about talking slow, saying random words really loudly, stuttering, n n so on. I never noticed a lot of times I was doing anything. And ur right, I joke bout it all now bc what else can you do? The random body twitches have just come on the last month or so. I went to the ns yesterday n he said it w as not related to Chiari so I asked him why it was happening n he said he had no idea but it wasn’t Chiari. So here I am back at step one, gong to the nl. It’s so frustrating!!! I feel like everyone thinks I’m crazy, but I know what my body is doing! Thanks for ur reply n good luck to u, if u find any new info at all pass it this way pls!