Arnold-Chiari Malformation Support Group

Tingling pain in the fingers/hand is my main chiari syptom. Live with it on a daily basis even after surgery as it was an original symptom.
Has it only just started?

I have a sensation like that as well. It only started happening since my second surgery....suddenly I get tingling in my fingers and then I feel like I'm going to pass out. It only lasts for about 5-10 seconds then goes away. It seems to come in spurts...it'll happen several times a day for a couple days, then go away for a while, then comes back. Does your dizziness come at the exact same time as the tingling?

I was told by my NS that the tingling is because your body is trying to pull blood up to your brain, but it is difficult because of the compression due to Chiari. Because your heart is working to pull the blood away, your limbs, like your fingers and toes, start to tingle. It is very possible that it is a sign that you are developing POTS, which means your body has a hard time regulating your blood pressure. I have it currently and I basically have to take it easy all the time. I can't rush to do anything or I'll feel bad. Hope this helps.

Clea, Had it before but not very often. Now it's everyday.

No, the tingling does not come before the dizziness or with the dizziness. When I'm dizzy, It's not like a pass out kinda dizzy, it's like an off balance/vertigo kinda thing but only in my head. My body feels balanced. My brain just feels off and my eyes feel twitchy...Weirdest thing in the world and hard to desribe. My lips do tingle though when I bend down but only on the days that I am having vertigo problems.....

The tingling/numbness/pins&needles in my feet&legs is what I first experienced 3 yrs ago when dr's were thinking MS. Those symptoms have just increased & spread (arms/fingers & scalp even) since then. The NL has me on Lyrica for the nerve/pins&needle pain & it does help. But the tingling never goes away just worsens or moves.

I experience vision issues when I bend down/over, dizziness (not the same as the 'falling' feeling I get when sitting/standing/walking) & a tugging feeling in my head & back.

Let your NS know about this especially because of what he told you...I wonder why he didn't give a you reason this is a bad sign when he told you it is. And are you a candidate for surgery? ***Jean

Yes, I am a candidate. He wanted to operate right away but b/c my husband deployed said we could wait and watch, "really carefully". I already went in with a really bad day. Could barely walk and he said, "You know what we need to do". I just have so many good days and not so many bad days. And so many people on here with repeat surgerys make me wonder why even get the surgery in the first place? To get another?

The "falling" feeling I get often, I hate it! It's when I look a certain way or move a certain way.

I also get the scalp tingle, very weird feeling too. Did you ever get officially DX with MS? I am so scared of that too. My step Mom had it and I watched all the horrible things she went through.

Also, my vision messes up sometimes too.... Just gets blurry.....

The tingling pain (describing it as that doesn't make it sound too bad but it can be agony,) has only stayed in one hand, not developed in other limbs following surgery.
I cannot recall having tingling in lips or it relating in any way to feelings of dizziness which I have a lot of days.
I had surgery because I was told I'd get worse if I didn't. I still believe that to be true. Yes there are risks to surgery but decompression did actually do what I was told it would.
I don't know if you've tried it but holding heat pillows on my hand when there is that kind f pain helps - might be worth a try.

I also would try putting ice paks on your hand when the tingling is bad. I have heard that the brain can only process one sensation at a time, so if you trick it with cold or maybe hot (don't know about hot)...it stops the tingling sometimes. I had more severe itching than tingling, the ice really worked!

Tingling and numbness are really common symptoms of neuropathy...you have nerve impingement somewhere...

Sounds like your surgeon is willing to help you...BUT...be careful not to jump into surgery. Maybe a 2nd opinion? I don't know...guess it depends on how debilitating your sx are. I would be leery of going for tingling if that was the major sx.

MS is a big topic. But it is dx'd (diagnosed) by 3 tests. One is a spinal tap to rule out Lyme's disease, etc.

The other is the SSEP, evoked potentials, which is where they see if you have neuropathy or not.

The last is a brain MRI, and they look for a certain type of pattern in brain lesions, called "Dawson's Fingers." If you "score correctly" on these tests, "tick these boxes," then they dx you with MS. Truthfully, MS can only be confirmed by autopsy, obviously after you die. Many many people have been falsely dx'd with MS, only to find out later they have Chiari...or something else.

I have brain lesions showing on my MRI due to brain injury. The report said they were due to either MS, stroke, or traumatic injury. Since I just had had a traumatic brain injury, that is what confirmed it.

Later, a specialist told me she thought I had all the signs of MS. I researched a lot about it. There were just a few things about MS that did not seem right to me. Then someone came on the MS message board and said that many people had been falsely dx'd with MS, actually had CM. I looked up CM...and the rest is history.

Just some more thinkin' out loud!

here4ya

I had my first brain MRI (NL surprised Chiari wasn't documented then) to get closer to a MS diagnosis..no lesions found (as what was told to me by NL...still trying to get copies of that MRI). Changed NL & had other neuro tests done to try & find answers to peripheal neuropathy & parathesias. Was dx'd as "cause unknown" & told that is not uncommon. The 2nd NL was ready to do spinal tap (she did not order the original MRI & felt that just because nothing showed then she wasn't ready to rule out MS) thinking maybe I had 'recurring/relapsing' MS (my natural sister, we were adopted by same parents, has been dx'd w/recurring MS), but then my company changed hands & so did my medical insurance. That NL is no longer available to me. Bad news because I trusted her, good news because I have heard Chiarians should avoid spinal taps & since CM was not 'documented' at the 1st MRI no one was considering it.

I have had some success with alternating warm & cold packs...I think here4ya is on the right track w/how our brains operate...maybe altering the temps really confuses it into giving me some relief.

To Jenn1507, I hate that 'fallin' feeling. All I have to do is move my eyes from the monitor to the keyboard & I feel as tho I am falling out of my chair. It really is annoying at work since I do a lot of data entry & look from the paper to the monitor about a million times a day. Last night was odd 'cuz I was laying down & not moving & I still felt as tho I was 'falling.' Try a number of things to see what works for you because we all different & none of us came with an 'Owner/Operator Manual." ***Jean