Hello everyone!
I was laying here reading some of the older discussions. I noticed that some of the symptoms that you all say Chiari may have caused I had those same symptoms but I thought they were all related to my weight which it still could be same of the cause. When I was about 12 I had migrane heads aches at least that’s what the dr said caused them. Lately I’ve had headaches when I yawn, for my job we have to do sit ups and the pulling on my neck and straining made me feel like my brain wanted bust out my head. Also at my job I work 12hr shift and I walked maybe 10 of those 12 hrs 3 days a week and when I get home my legs be stiff and the bottom of my feet burn so bad I didn’t want to walk on them. I don’t know if any of this have anything to do with Chiari but since the dr placed me on medical leave I feel better as far as my feet and legs aching. The worst symptoms is the numbness on my left side and the constance burning in my shoulder, arm and hand. It be so sensitive to heat and air I don’t want nothing to touch it not even my sheet. My vision is blurry at times and my right eye is swollen my ankles swell, left side of my face is numb at times. O I almost forgot about the snoring. Its so bad when I will not go on family trips or trips with friends if I have to share a room because im so embarrased. Im losing grip in my hand and sometime I stumble of words and my hearing is getting bad. I don’t know it my illness is the cause of these symptoms or what causing them but they are there and I feel like my family/ friends don’t understand or believe me when I tell them what problems im having. So now ill tell them to google it so I don’t have to try to explain it to them.
Thanks for taking to time to read this but I just had to vent and see if any of you have or had these symptoms!
Tradee30
Tradee30,
I think it is very important to write down all of our symptoms and relate those to our neurologist and/or neurosurgeon. We can't always chalk things up to Chiari and ignore the symptoms. It could be something totally unrelated to Chiari and it needs to addressed by our doctor(s). We should probably not be doing situps where we have to tug on our necks. I'm sure that is a no-no for us chiarians! Your leg and foot pain could be unrelated to the chiari. Make sure you write everything down and tell your doctor. Even if you think it is not important, it could be very telling for your doctor! I forget, have you seen a neurologist/neurosurgeon yet? Are you thinking about having surgery? Some of your symptoms could be relieved thru surgery like headaches when you yawn, cough, bend over, laugh, etc. The pressure in your eyes would probably feel better and the swelling and numbness in your face. Make sure you tell your doctors everything!! Please keep us posted on how you are feeling and the progress of your treatment!
Take care,
Carla
I had some of the same symptoms before my surgery. When my vision started to get blurry but it wasn’t because of my vision thats when i really started to consider the surgery. What pushed my to decide to just go for it was the blurry vision and the pressure in my head when I coughed, sneeze, peed, laughed ect. I had the problem with loosing my grip on things and stumbling over my words before the surgery which was bad when flu shot season rolled around but they are both getting better since the surgery. I have to remember that I’m not all the way healed since it hasn’t even been six months but I feel so much better. You should really start keeping a list of your symptoms and discuss it with your neurosurgeon at your next appt. Especially keep track of the frequency, what make it worse, ect… What kind of job makes you do situps? That’s something you should probably refrain from doing. Keep me posted about what your neurosurgeon says at your next appt.
O ok thank you guys for responding and I guess I should have joined this group much earlier so I could have addressed all my symptoms with my NS. I will surely start after surgery though. Thanks again
Your symptoms sound like you made the right decision to have the surgery. Even though I suffer from symptoms on a daily basis, I do NOT regret having surgery. I know that it helped my really bad symptoms and left me with ones that I try to manage and do okay! When was your surgery, snurbette?
Carla
snurbette said:
I had some of the same symptoms before my surgery. When my vision started to get blurry but it wasn't because of my vision thats when i really started to consider the surgery. What pushed my to decide to just go for it was the blurry vision and the pressure in my head when I coughed, sneeze, peed, laughed ect. I had the problem with loosing my grip on things and stumbling over my words before the surgery which was bad when flu shot season rolled around but they are both getting better since the surgery. I have to remember that I'm not all the way healed since it hasn't even been six months but I feel so much better. You should really start keeping a list of your symptoms and discuss it with your neurosurgeon at your next appt. Especially keep track of the frequency, what make it worse, ect.. What kind of job makes you do situps? That's something you should probably refrain from doing. Keep me posted about what your neurosurgeon says at your next appt.
I am experiencing many of the same symptoms. Blurry vision, severe pain in my feet, burning sensation in them if I walk much at all. I have trouble remembering things I have just said, trouble hearing, pain in my shoulders and stiffness in my neck. Also weakness in my legs and arms quite often. I am finding that most people don’t understand. My neuro really thought I had MS, but it was ruled out(thank the Lord), however because of that people seem to think I should be fine. They don’t realize that CM has many of the same symptoms and that I’m not fine. I am just trying to educate as much as I can and complain as little as possible, lol. Many blessings to you! I hope you feel better soon!
Well said, my dear friend Abby.
misallen.
im sooo glad that they changed it from MS, its a tough one to get your head into,
abby you are sooo right
joelene
misallen said:
I am experiencing many of the same symptoms. Blurry vision, severe pain in my feet, burning sensation in them if I walk much at all. I have trouble remembering things I have just said, trouble hearing, pain in my shoulders and stiffness in my neck. Also weakness in my legs and arms quite often. I am finding that most people don't understand. My neuro really thought I had MS, but it was ruled out(thank the Lord), however because of that people seem to think I should be fine. They don't realize that CM has many of the same symptoms and that I'm not fine. I am just trying to educate as much as I can and complain as little as possible, lol. Many blessings to you! I hope you feel better soon!
Thanks everyone for your words of encouragement. I pray for each and every one of you that there will eventually be pain free days.
You can always complain to us if you don't want to complain to family and friends that don't understand! We understand it all and are here for you:) I hope that you get on the right track and find a doctor near the Nashville, TN, area. Let us know if you have trouble with this!
Carla