This may seem trivial or silly to some of you but I'm new to this and I don't want to panic unnecessarily. A few weeks ago, before I was diagnosed, I started experiencing the tingling and burning sensation in my toes. It's one of the symptoms my doctor noted as a reason for my MRI, along with the headaches. Since then, and mainly in the last couple of days, it has progressed to my hands, up my shins, on my scalp and along my spine. It's more distracting than anything but my concern is why it suddenly seems to be getting worse and at such a rapid pace. It scares me a little. Should I be concerned or am I just being silly?
I also have it. It started in my hands in 2009. Then started on my scalp in 2010. And progressed up to my elbows and in my feet in a matter of weeks after I had my minimally invasive surgery in Feb. I would call you NS and let him know it is progressing b/c it could be a sign of a syrinx or of your syrinx getting worse if you have been diagnosed with one.
Susan, thanks. It helps knowing I’m not alone 
Jessi, I don’t have an NS yet. I was diagnosed by another doctor who ordered the MRI when my own doctor was unavailable. I have an appt with my dr and a neurologist on the 6th. I was told it was my next step so I’m hoping it gets me somewhere.
Jessi Linn said:
I also have it. It started in my hands in 2009. Then started on my scalp in 2010. And progressed up to my elbows and in my feet in a matter of weeks after I had my minimally invasive surgery in Feb. I would call you NS and let him know it is progressing b/c it could be a sign of a syrinx or of your syrinx getting worse if you have been diagnosed with one.
I have this tingling in my hands, feet, face, and scalp. I do not have a syrinx so the doctors I've seen can't find the cause of it. It's what prompted the MRI that found the chiari.
Anglyn, that's good to know. I'll keep that in mind. So far, from the one limited MRI I've had it didn't show a syrinx for me either. But that was only to C5 according to the report. We shall see. Thus far, every day brings something new for me. :/
I don't have a syrinx either, or atleast they haven't found one. My NS is a quack so I could have one and not know.
I have the tingling in my right arm all the way up to my neck and down my spine. You are not silly, and a little advice is that chiari reacts to people in all different ways. It
You're not being silly, of course you should be concerned, it's a bunch of weird and uncomfortable sensations right! :)
The way you describe it is exactly what I went through. I got really frantic looking for help and answers because it was happening so fast, but that probably made it worse.
How active are you on an average day?
I know it sounds stupid and totally the opposite of what anybody in your life is probably telling you, but in my opinion you shouldn't be doing much. Also, you need to relax correctly and that's something only you can figure out how to do because your anatomy is unique. I personally lie on my back on the bed with a single pillow under my head and one under my knees. If I move or rest in one place incorrectly the ringing in my ears gets reallly loud so I've learned to correct myself immediately. Be strong darlin, I know much this sucks <3
Bill, I’m pretty active. 4 kids and a full time job. Mostly desk work though. I am learning to control my activities based on how I feel. Today it feels like someone is pulling a rope against my jaw. Just weird!!!
That's insane, I have no kids and no job and every day is a struggle :\ you're a true champ :)
Do you happen to have an MRI picture you could share on here?
No, I haven’t saved it yet. Still on cd and I’m on my phone anyway. It did say though that I only ha mild crowding and my herniation only reaches to C1. I think that’s good. Lol.
There's nothing mild about it. I guess all I can (or want to) say is that if you find your symptoms getting worse, first of all don't freak, just make sure somebody knows. Then go see a specialist, which is something you should already be doing if you are suffering.
My only advice would be from my own experience... don't push yourself too hard because it will catch up to you. Take it easy in general, but mostly on your neck... like try not to turn your head more than half way to your shoulders (like 20-25 degrees from looking forward) - also up and down head movements - try to reduce those as well. Your primary care doctor may also be able to prescribe you some medications as needed for your nerves/pain/sleep/anxiety(which may or may not be anxiety triggered by chiari, doesn't matter).
Much love to you and your family<3
Yeah, the habit of "popping" or "cracking" my neck is still one I'm trying hard to break as I understand it's not good, especially for us. I admit, it's tempting because of the temporary release of pressure but in the long run, not so awesome.
I'm not seeing a specialist yet. I'm still seeking one out at this time. I have an appt with my PCP tomorrow and a the Neurologist on Friday. We'll see what comes of that.
I appreciate the advice and tips. They are helpful as I don't have a lot to go on at this point. Take care!
i found that i had tingling until i had decompression surgery, now i only get occasionally, very rare really, it surprises me now, and i think whoa thats right i remember that, im 1yr post op,
its not the over crowding you have to worry about, its the fluid flow, talk to your surgeon on that, do you know whether you had that checked or your pressure? to do this a thing would have gone on your finger,
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It may also be involved in some cognitive functions such as attention and language, and in regulating fear and pleasure responses, but its movement-related functions are the most solidly established. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems of the spinal cord and from other parts of the brain, and integrates these inputs to fine tune motor activity. Because of this fine-tuning function, damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning
i think once we understand the areas of the brain or spine that are effected, then alot of it makes sence,
good luck with the NS on friday, i hope that goes well for you
ask questions and dont forget to take someone with you if you can
Thanks Jolene. You guys really are amazing. My fiancé is coming with me. I can’t remember anything anymore so I figured that was important.
Im happy to hear there may be an end in sight to the tingling. It’s become more aggressive in the last couple days. Last night was almost like a strong pinching sensation. Kept me from sleeping. Also now experiencing strong buzzing sensations and jerking in my left forearm. Very distracting.
I did have something on my finger during my MRI. I assumed it was for my heartbeat. Hm. I’ll ask about that.
Thanks so much. That was very helpful. 