List of Symptoms

Symptoms and Treatments
1

I thought it might be cool to see what everyone's symptoms are. I know this could turn into a long discussion, as everyone probably has the same lengthy list as I do! LoL!

Here goes, I'll start at the top of my head and work my way down:

Fatigue

Migraines

Pressure Headaches

Memory Problems

Foggy Brain, I can't think of the word I want to say half the time!

Blurred Vision, yet the optometrist says I have 20/20 vision.....go figure!

Flashes of Light in Eyes, I carry my own disco ball around in my eyes! LoL!

Light Sensitivity

Night Blindness

Ringing in Ears

Neck Pain

Spine Pain

Chest Pain (feels like I'm being squeezed)

Lower Back Pain

Tingles in my Fingers

Numb Patches on each Thigh

Clumsyness, I trip over everything and run into every doorway I walk through!

So, there it is......I don't think I forgot anything, but who knows! LoL!

By the way, my CM 1 is a 10mm herniation with no syrnx (sp?) at this time. I was just diagnosed June 12, 2013, by accident while my neurologist was checking me for Multiple Sclerosis.

2

I have had a brain, cervical, & upper spine MRI, a Visual Evoked Potentials Test, and a Nerve Conduction Test. I have been referred by my Neurologist to a NeuroSurgeon and am currently waiting for a call from his office to set up my appt with him. I don't know why she wanted me to see a NS.....any ideas? She stated to me that she didn't think I needed surgery, but that she wanted me to see this guy who is a NS......

3

I have confirmed CM1 and suspect syrinx...

Double vision

blurred vision

Headaches, pressure

Arm numbness (upper back of left arm)

tingling limbs and face

irregular heartbeat

rapid heartrate

tremors

confusion

nausea

auras (flashes, lines, squiggles, sparkles, and large rotating designs which last up to 1 hr)

neck and shoulder pain

upper and lower back pain (not in the middle)

leg pain

foot leg cramps

muscle spasms, twitchy

ringing in ears, ears feel plugged

feeling of throat closing up

light sensitivity

auditory sensitivity

difficulty with fine motor function

poor memory

pressure on chest and back

sharp sudden neck to head pain

faintness

fatigue

irregular blood pressures

feeling adrelalized at times

I'm sure there are others I have missed... every day seems a bit different

4

Did you have a c-spine mri or just the brain? A syrinx can develop anywhere in the spinal column.

5

I had a brain MRI and a cervical & upper spine MRI. I’m guessing a lower spine MRI would be my next step…

6

I think everyone's list will be long. When I go to a new doctor I never have enough room on the paperwork to write down all my symptoms. I always have to write "continued on back", and watch the expression on the doctors face as he turns the paper over...LOL!

Headaches/Migraines

Hear ringing or water running sounds

Can not handle loud noises

Eye twitching

Double/blurry vision, black spots in vision

Very sensitive to bright lights/sun

Neck pain, tension and burning

Shoulder/arm pain

Numbness and tingling in all extremities

Concentration/Memory problems

Foggy Mind

Upper, Middle and Lower back pain

Sciatica

Muscle spasms

Hip pain

Hiccups, at least 2xs a day

Insomnia

7

well, here's my list and it's a little long, but seems like i am constantly adding more new symptoms as time gome days i can hardly stand up and walk. feel like im wearing a lead suit.

numbness and tingling in my feet

sensitive to bright lights and smells

have collapsed a few times

the numb brning pain between my shoulder blades radiates down my arms and into my fingers

mid-back pain-feels like it's about to snap in half

lower back pain that also feels like its going to snap in halfneck and upper back pain

difficulty swallowing

hearing problems, they start ringing then they feel like they are plugged up

vei ns in my hand and feet pop out its very painful and feels as though i have a turnaquit on my arms and legs

Trouble writing(correct spelling in my head but it gets messed up when i go to write it down T

Trouble finding words

Slurred speechTrouble concentrating

sharp stabbing pain in my head followed by blurry vision

tachycardia

head feels like im in a fog

arm pain

terrible back pain when i stand still to do anything such as dishes or fold laundry it a numb tingling burning pain

cold hand and foot(left only)

-Head pressure when coughing sneezing or straining

d pressure at the base of my skull and up the right side of my head.

balance problems

-Ca n't sleep laying flat (over two years now)

-chest pressure/pain

Ins omnia

-

Heart palpitations

Short-term memory issues

-Eye strain/pressure

-Nausea

-Extreme Fatigue

8

I have CM & SM & had my decompression surgery January 2012.

Extreme Fatigue, Constant neck pain, Paralyzed vocal cord, numbness & tingling in arm, hand, & foot (All pain is on my left side only), Problems swallowing, Pressure headaches / Migraines, Pain above left eye, Vision problems, Flashes of light in corner of eye, Balance issues, Shoulder blade pains, Upper & lower back pains, once in a while i get words mixed up when reading, Sensitivity to bright lights

I found out that some of my nerve pains maybe due to Dieabities that i now also have. The ONLY 1 in my entire family!!!

9

It’s great to hear I’m not crazy. My NS says that memory loss is not a symptom of my chiari. So frustrating to feel this way. Thanks everyone.

10

Best list of complete symptoms I have ever read:

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11

In order for a doctor to get a complete picture of what is going on with the you, it is important to let the doctor know every symptom you are experiencing. You may not see it as a serious symptom but it may be an important part of the puzzle the doctor is trying to piece together.

thistle said:

Gosh! I never put all my symptoms down when I see a doctor or anyone else. I just stick with the more "serious" ones. Should be interesting. I'll put if the symptoms resolved with the decompression surgery I had a few months ago. I have positional cervical cord compression (PC3) as well so there is some carryover.

fatigue has improved but still present though different

cognitive deficits (memory, executive functions...) hard to say if improving possibility or permanent? I am worried

brain fog RESOLVED

vision exercises did not help before surgery but now IMPROVING, seeing the eye lady this week, I had my picture taken for my passport recently and my eyes were not together. It will be a reminder for the next 10 years of my wonky eyes!

swallowing RESOLVED

urgency and frequency with urination resolved for 1 month after surgery. I was very exited about this but has now RETURNED. This is attributed more to positional cervical cord compression than chiari for me

"fake" neck pain RESOLVED, I call it "fake" as my neck would be painful but I did not know where it was on my body

balance with eyes closed or in the dark worsened after surgery and is attributed to PC3

light and noise sensitivity no change

insomnia before with worsening after surgery, attributed to PC3 symptoms worsening

hearing deficits no change, more of a brain processing which maybe I can work on ?

slurred speech RESOLVED

water in the ears RESOLVED

clumsy hands not sure as have not challenged

ringing in the ears RESOLVED

facial numbness and tingling RESOLVED

lay on back I can do it now!

bilateral numbness in big toes NO CHANGE, had been constant for a long time so I do not think that feeling will come back

my shoulders and hips have maladaptive recruitment issues, which may be attributed to brain stress AKA chiari (or so says my physical therapist). Currently working on my hip but will take some time to see if it resolves

have problems regulating my body temperature and strange unusually anxiety which again is attributed to PC3. I will be starting physical therapy for neck stuff to help with that next week!

What a list!

12

Thank you for reposting that. I had seen that before but didn't write the link down :)



TracyZ said:

Best list of complete symptoms I have ever read:

FileNotFound

13

Wow! Thanks for the list!! That's a heck of a compilation. I even found a few symptoms that I have that I didn't know could be attributed to my CM: my depth perception problems, my hiccups when drinking carbonated beverages, and my urinary problems....I seem to go very often and sometimes, I leak a little before I can get to the restroom. I don't drink very many fluids though...I am really never thirsty unless I'm outside working and sweating!

14

Yay! So I'm not crazy?? LoL! I swear, I feel like I am sometimes. Thankfully, I am surrounded by a pretty good group of friends & family who, so far, are pretty supportive.

Mandy said:

TexasMom, I get hiccups with soda too! And breaded products if I eat them too quickly. That's funny :)
15

Wow, these are some impressive lists. I guess the only symptoms I have noticed are:

Pain in my head when I laugh, cough, sneeze too hard. I rarely have headaches and I've never experienced a migraine.

Recent neck and shoulder pain, mostly on my left side. Nagging pain on my right side. I have stiffness in my right hip, but that's probably from sitting too long and not enough exercise (LOL).

Trouble swallowing at times and feeling like my throat is about to close up.

Irregular heartbeats and blood pressure. My PCP want me to start blood pressure medication. I've decided against it until after my surgery to see if will be corrected. I have always had low to normal blood pressure.

Both lower arms aches to no end and its aggravates me to death, especially when I try to sleep at night.

Blurred vision, ringing in the ears at times, and foggy thinking/processing.

So far, that's all that I have noticed and probably the only ones that get on my nerves. I have a syrinx right behind my throat which is probably contributing to my swallowing issues. My surgery is scheduled for Monday, July 15th and I will be glad to see these symptoms diminish.

16

Hi here goes I have C1 .Iih smptoms are::- f eeling of chocking rapid heart beat.muscle weakness mobility problems bowel problems…pins and needles in back spine arms and legs.odd sensation in toungue and mouth pins needles in my face chest tightness as if being squeezed. Breathing problems sleep apneao memory problems audio disturbances switching eyes feel like I’m winking at people my insides feel like they are made of jelly and feel like they are shaking.I think that’s all but tomorrow may bring even more!! Keep smiling everyonexxxxxxx

17

Oh, I'm so perplexed. I just posted a question about whether or not I should have the surgery. Why are you told you don't need surgery? Do you want to have it? It's been 6 wks since my diagnosis, and two different NS have told me I need surgery. My herniation is 15mm and my ONLY symptom is the head pain.

TexasMom1977 said:

I have had a brain, cervical, & upper spine MRI, a Visual Evoked Potentials Test, and a Nerve Conduction Test. I have been referred by my Neurologist to a NeuroSurgeon and am currently waiting for a call from his office to set up my appt with him. I don't know why she wanted me to see a NS.....any ideas? She stated to me that she didn't think I needed surgery, but that she wanted me to see this guy who is a NS......

18

The list is so long and we have many things alike but are different too.Thanks for the list,even though I have had decompression I still have many symptoms!but I would do the surgery over again for the improvement accomplished.There’s not a cure for chiari but the decompression is a great treatment.TexasMom,my hiccups happen when I eat a apple,… is that strange?,drink sodas,and eat. other fruits.I have had trouble with swallowing,gagging,hicuping,loss of voice,there’s a nerve called the vagus nerve and it was effected by the surgery.I am out a year now and there’s been many changes and it seems to be getting better in some ways,it is still a struggle.My NS says it could take 1-3yrs. to realize them all. I’ve had lots of suregeries and never had a harder recovery than this,not to scare anyone but to prepare them for the journey.Good luck to you all thanks for the posts,it is so great to have those who know how we feel.

19

Confirmed 15mm CM with displacement of C1 and C2

-Severe migraines

-Loss of voice

-Difficulty breathing

-Loss of hand eye coordination

-Intermittent blindness in right eye

-Stiff neck

-Burning sensation down both arms from neck

-Seizures

-Bowel/Bladder problems

-Memory problems

-Insomnia

That's all I can remember off the top of my head.

20

my 6 year old daughter has chiari with a syrinx and I am having a hard time telling what symptoms are related to this or if they are from something else. I was curious about your symptom of nausea. my daughter has been complaining of belly pain for over a month now and then says she wants to throw up. does your nausea last for long times like this or just comes and goes. thanks for any info you can help me with.



Kristi W. said:

well, here's my list and it's a little long, but seems like i am constantly adding more new symptoms as time gome days i can hardly stand up and walk. feel like im wearing a lead suit.

numbness and tingling in my feet

sensitive to bright lights and smells

have collapsed a few times

the numb brning pain between my shoulder blades radiates down my arms and into my fingers

mid-back pain-feels like it's about to snap in half

lower back pain that also feels like its going to snap in halfneck and upper back pain

difficulty swallowing

hearing problems, they start ringing then they feel like they are plugged up

vei ns in my hand and feet pop out its very painful and feels as though i have a turnaquit on my arms and legs

Trouble writing(correct spelling in my head but it gets messed up when i go to write it down T

Trouble finding words

Slurred speechTrouble concentrating

sharp stabbing pain in my head followed by blurry vision

tachycardia

head feels like im in a fog

arm pain

terrible back pain when i stand still to do anything such as dishes or fold laundry it a numb tingling burning pain

cold hand and foot(left only)

-Head pressure when coughing sneezing or straining

d pressure at the base of my skull and up the right side of my head.

balance problems

-Ca n't sleep laying flat (over two years now)

-chest pressure/pain

Ins omnia

-

Heart palpitations

Short-term memory issues

-Eye strain/pressure

-Nausea

-Extreme Fatigue