Would these symptoms of Chiari I Malformation be a need for surgery?
Hi, I am new to this forum an was just diagnosed with Chiari malformation I two days ago.
It was discovered that I have this because I have been experiencing hand numbness for about 4 months, and it has been getting progressivly worse. At first it was just the tips of my fingers, but now it goes well past my wrists and i lose mobility of my pinkys completly when they're numb. I went in to get an MRI for it and they called back a few days later saying I have Chiari malformation of 7mm. I have an appointment with a NS in two weeks - on the 16th of October.
Since two days ago I have been looking up common symptoms and have been amazed by how many of these I have been experiencing, but had not been connecting them all together until I got this diagnosis. Heres a main list of my symptoms:
- 'Seeing flickers of light ("fireflies") (I actualy though this was weird when I read it because I've only ecperienced this sensation once, nd it was when i was waiting to get my MRI, and I had turned to look if there was metal on my tanktop and when I turned back around all of a sudden theres white lights flying around adn I'm reaching thorugh the air thinking theres things all around me, and my moms just looking at me, andim like 'wooah mom, theres fireflies everywhere' I was kidn of freaked out when I read that because I had called them fireflies, then I read that symptom and just thought it was weird.)
- 'Photophobia' (Only occasionaly)
- Sensation of spinning
- Tinnitus (I've had a constant ringing in my ears for several months actualy)
- Pain in the middle of my neck radiating towards my shoulder blades. The whole area right there has just felt very heavy lately
- Numbness (obviously, the reason I went for the MRI in the first place. I do not get it anywhere besides the hands though)
- I've had problems walking wince I was 9. I had a spinal fusion on L2 and L3 in my back when I was 9 and since then I've never been able to walk right - could this have been a sign of Chiari?
The biggest category I seem to have problems with is 'respitory, heart, and abdominal' and 'Cognitive'
- Shortness of breath; I've felt liek I havnt been able to get a full breath for several weeks now
- I began having chest palpitations about 3 years ago, They're less frequent now but still do happen occasionaly
- Episodes of Rapid heart rate
- Abdominal pain; about 2 weeks ago I got a very intense pain in my lower abdomen and lower back and it was so intense I could not do anything - I couldnt even walk, it went away then came back about an hour later, it lasted about an hour both times, I havnt had it since
-Poor sleep; for the past about 5 weeks I've been wakign up almost every 1/2 hour or hour, and just fallign right back asleep
- Fatigue; i've been completly exhasuted for about 3 months now, if im not a school or work then I'm dead asleep of course its never good sleep!)
- memory problems; specificaly with names. I had a weird experience at work about 3 nights ago, I couldnt seem to call anyoen by the right name, I could call a guy by a girls name and a girl by a differnet girls name, and I couldnt seem to get any of the names right. Everyone at work though I was kidding around but I really could think fo their names, I cant really describe how it was. It was just really frusturating)
- Concentration; since about 2 years ago, I have felt like I've never been able to concentrate on anything, infact I almost failed last school year becasue I simply cannot concentrate long enough on one task (It's been almsot two hours from when I started filling this out to now)
- Slurred speech; I have noticed this for about 2 months, but noone else seemd to have noticed it until about 2 weeks ago. I feel when I'm talking that in the middle of my sentences I'll stop for a split second and then just continue, its more like a little stutter, but I was talkign with my boyfriend last night, adn he says that I have been slurring my speech for about 2 months now, he just never said anythign about it.
So those are pretty much all my real symptoms I've been having, I apoligize for the length, but im really just so nervous about all this I want as many good opinions as I can get before I go to the NS in two weeks. I plan to bring a list of all my symptoms with me there.
I read that the two main reasons that NS's will perform a decompression surgery for CM is intense headaches (which I have not ever experienced a real headache, just the occasional sinus headache) and vasovagal syncope.
I was diagonsed with Vasovagal Syncope due to cronic (chronic) low blood pressure about 1 1/2 - 2 years ago, and so I'm wondering - could this CM be the reason for the syncope episodes? I experience syncope about once every 3 months, and when it happens, it happens bad, I'm told I look like I'm having a seizure, but I've been tested over and over, and apparently my body just reacts badly to passing out, and has a 'fake seizure'. From what I understand the Vagus nerve goes from the toppish of your spine to your lower back, so the top of it could be getting disrupted from the CM, i believe.
Really all I'm askign is does it seem, from those who have been told they do or do not need surgery based on your individual symptoms, that I will be needing surgery? I am really hoping I do, because I believe it will fix my syncope episodes and my hand numbness, and the numbness really is a handicap because not being able to use two of my fingers is very disruptive to my daily life, and I just as of right now, maybe after more testing my thoguhts will change, but as of now, I am hoping to get this surgeyr because it seems like a longterm fix for my problems, unlike medication, because when I forget one dose of my medication for my blood pressure, I will most liekyl be passing out that day.
Thank you so very much to all who read and reply to my question. Also, I do not know if matters or is relevant, but I am a 17 yr old girl living in Ohio. Thanks so much for reading, and sorry it's a tad long!
Many of the symptoms u listed can be associated with Chiari and chiari related conditions.
Meaning, that some of what u r experiencing could be a related issue and not chiari itself...and it is important to get all testing to see what all may be affecting u b4 u consider surgery as this can cause u to get worse post op if u do not take ur time and rule all these out and take precautions if and when u may be considered a surgical candidate.
Not everyone with Chiari is a surgical candidate and there r risks to having this surgery so having the right Dr is key....u want a true Chiari specialist and u want to educate urself so u will know when u have found the right Dr.....
We do not suggest Drs, but will suggest u see a few and compare them...we have a list of Drs that the members here have been to and liked, it is not a referral, but a means to help u get started with ur research.
Keep in mind there r activities u should avoid to keep symptoms as bay....
and chiari symptoms do cycle....so what u r dealing with now may subside, and may not come back for some time, I know this as I had symptoms at ur age too, but was not dx'd until age 48.
BTW- I always had low BP...syncope is not uncommon with chiari and related conditions.
Many of us do have insomnia as well as just do not feel rested after a nights sleep.
This is something u do not want to rush, but u want to check all related issues carefully......they r- syrinx, disk issues, tethered cord, sleep apnea, ICP, POTS, ehlers-danlos,vitamin levels......
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