I have a question, today I got numbness and tingling from the bottom of my eyes to my chin, it hasn’t gone away. It started at 12:15 pm. Then I tried to sleep and I woke up with my heart beating too fast. I’m in another country, so I will not have a regular neurologist for a couple of days (until I get my insurance and paperwork done etc) but I just need to know if this is something I need to worry about or just a symptom or something not related with the Chiari. I also have a huge cyst.
Hi Lourdes,
I had face numbness and specially right on my nose and above mouth and up to my cheeks prior to my decompression surgery two years ago. This symptom has not returned. For me it was on & off without any specific trigger. I couldn’t tell you what this means though. I was diagnosed with CM1, 5mm with no other related disorder. Good wishes!
Hi Lourdes, I had face numbness and specially right on my nose and above mouth and up to my cheeks prior to my decompression surgery two years ago. This symptom has not returned. For me it was on & off without any specific trigger. I couldn't tell you what this means though. I was diagnosed with CM1, 5mm with no other related disorder. Good wishes!
Thanks Beeba for your response… I hope I can see the neurologist today, now I woke up feeling more pressure on my head than usual.
Beeba said:
I don't know what it means - but any numbness anywhere should be considered serious. My pinky toe went numb once for days. First I never thought I would notice but you do. Second there is a reason why. I did just laugh because you can really run into an er screaming I have a numb pinky toe but it is something to look into. Cord compression is usually the culprit.
Hello
I am almost two years out from my surgery. I had it before and really bad after surgery. My Neuro said that it was not a huge concern. Are you getting kind of headache with it? Sometimes that’s how I knew a migraine was coming. I would get the Bealls palsy down the right side of my face. It would stay for a few days.
You should definitely see your doctor as soon as you can. In my personal experience,I have had numbness on my face and arms for two years now along with headache. I have a 5mm herniation. Although I was seen by a neurologist and neurosurgeon, they couldn’t pinpoint where the numbness was coming from or why. They also said I didn’t need surgery and that I just had to manage my symptoms which is what I have been doing. I am currently trying Botox for the headaches and so far so good. Blessings,
I had numbness to my face and tongue which is what initiated me having a MRI. It lasted several hours. I only had it the one time and haven't had it since, but a doctor told me it was likely positional nerve numbness or something. But to be honest I don't think they ever know what to tell me.
My feet have started getting very cold even when it’s not cold all through the day.They will feel as if they’re have been put in ice,when I get them warmed they hurt and feel hot.My toes have been numb even before surgery.Does anyone have this problem?
This is my first reply to anyone posting questions on this service. I have been diagnosed with a CM1 and it seems recently have acquired a syrinx along with another non-cancerous tumor at the base of my spine. Anyway, making a long story short one of the symptom's of the syrinx was the numbness I was experiencing around my face. Additionally, the same kind of inappropriate sensory problems exist on my neck, across my collar and over my shoulders. The feeling of touch, cold and vibration seem to return to normal beyond there. I'm told this complicates the urgency for surgery to correct the problem as it puts you in danger of irreversible paralysis. The Dr's say, " this is a result of damage that is being done to the Spinal Cord itself ". I don't know what your experience has been through your illness, but I truly hope you have the support system you deserve, to see you through. Be safe, and always take care of yourself.
Hi Lourdes.. I now have facial numbness, mostly left side cheek & jawline. It is important to get to a doctor, & it is important to have a doctor that understands this condition takes it seriously. Do you have a syrinx?? It sounds like nerve damage slowly getting worse, something that may be caused by a syrinx. BUT.....I HAVE heard of stories here of sudden symptoms that were in fact emergency situations!! Mostly, I find from personal experience & others here, that the head pain is usually chiari related, & numbness anywhere is usually syrinx related ( although I do understand that syrinx issues are by definition, chiari related). It is my understanding that you can get lucky, & these things can either come & go, or go away, but the best doctors I have seen + all my research has told me, that nerve damage is likely to be permanent, & the goal of surgery is to prevent more damage from happening, NOT to reverse it. Did that help at all?
My face went numb years before I was told I had CM. I woke up one day and I looked as if I had a stroke. I was also about eight months along with my first child. I was in a bad relationship so I thought it was from him hitting on me. Well, It wasn't ; It was nerve damage from a syrinx. If my doctor would have had the belles palsy checked out, like ordered a MRI then I could have had treatment a lot earlier. Like ten years earlier. I have had problems as far back as I can remember. I just wished someone listened to me along time ago, instead of thinking I was crazy or trying to get drugs. Maybe I would have felt a little better about myself and made better choices in my life. But, everything happens for a reason and Im a much stronger, smarter person now. So, if you think something is wrong you make sure someone listens to you don't let up or let them write you off; I wish I did.
Thank you ALL for taking the time to respond, I have read each one of them; my brother who is still in US left a message at the office of my last neurosurgeon I had in US (at the Mayo Clinic) and hopefully he will call him back tomorrow. It’s been a while since I had a spine MRI so, I don’t know if I have a syrinx now.
Thanks for your response, it did help me! it has been a while since my last spine MRI to check for a Syrinx, I’m not sure if I have one or not, can they form in a few years?
jessica said:
Hi Lourdes.. I now have facial numbness, mostly left side cheek & jawline. It is important to get to a doctor, & it is important to have a doctor that understands this condition takes it seriously. Do you have a syrinx?? It sounds like nerve damage slowly getting worse, something that may be caused by a syrinx. BUT.....I HAVE heard of stories here of sudden symptoms that were in fact emergency situations!! Mostly, I find from personal experience & others here, that the head pain is usually chiari related, & numbness anywhere is usually syrinx related ( although I do understand that syrinx issues are by definition, chiari related). It is my understanding that you can get lucky, & these things can either come & go, or go away, but the best doctors I have seen + all my research has told me, that nerve damage is likely to be permanent, & the goal of surgery is to prevent more damage from happening, NOT to reverse it. Did that help at all?
when I first found out I had chiari my right side of my face went num then my whole face was num along with my whole body after my surgery it was good but I started having right side of the face to go num my dr put me on muscle relaxers and it has got better according to him there is a muscle at the base of the skull and I have bad muscle spasms and that's what causes my face to go num it is very scary.
Thanks for your response, I didn’t know we have a muscle at the base of the skull; on October 25th I felt like an “electrical shock” on my head in one specific area (back of head) I felt it 3 times,I don’t know if that is related with all this or the Chiari or not.
goingcrazy said:
Lourdes
when I first found out I had chiari my right side of my face went num then my whole face was num along with my whole body after my surgery it was good but I started having right side of the face to go num my dr put me on muscle relaxers and it has got better according to him there is a muscle at the base of the skull and I have bad muscle spasms and that's what causes my face to go num it is very scary.
I would think so, but again, I'm glad you will follow up with your neurologist. Make sure to ask that exact question!! Lourdes said:
Hi Jessica,
Thanks for your response, it did help me! it has been a while since my last spine MRI to check for a Syrinx, I'm not sure if I have one or not, can they form in a few years?
jessica said:
Hi Lourdes.. I now have facial numbness, mostly left side cheek & jawline. It is important to get to a doctor, & it is important to have a doctor that understands this condition takes it seriously. Do you have a syrinx?? It sounds like nerve damage slowly getting worse, something that may be caused by a syrinx. BUT.....I HAVE heard of stories here of sudden symptoms that were in fact emergency situations!! Mostly, I find from personal experience & others here, that the head pain is usually chiari related, & numbness anywhere is usually syrinx related ( although I do understand that syrinx issues are by definition, chiari related). It is my understanding that you can get lucky, & these things can either come & go, or go away, but the best doctors I have seen + all my research has told me, that nerve damage is likely to be permanent, & the goal of surgery is to prevent more damage from happening, NOT to reverse it. Did that help at all?
i get those feelings sometime in the back of my head and neck it does feel like something has just shocked me
Lourdes said:
Thanks for your response, I didn't know we have a muscle at the base of the skull; on October 25th I felt like an "electrical shock" on my head in one specific area (back of head) I felt it 3 times,I don't know if that is related with all this or the Chiari or not.
goingcrazy said:
Lourdes
when I first found out I had chiari my right side of my face went num then my whole face was num along with my whole body after my surgery it was good but I started having right side of the face to go num my dr put me on muscle relaxers and it has got better according to him there is a muscle at the base of the skull and I have bad muscle spasms and that's what causes my face to go num it is very scary.
Hey Lourdes, I have experienced facial numbness. The neurologist and surgeon doesn't feel that there is concern nor do they feel I need surgery just manage thins on my own. I have a 7mm cyst which as I have found it really is no issue of the size. This site and those that discuss their symptoms and how they deal with is a lot of help and comfort, but always run everything past your physicians. Just remember your never alone and sharing your concerns with the forum will help reduce your anxieties. Best of luck.
