Before you answer this, write them down on paper and really think about every one. It will be interesting to see if we have the same ones.
Abby: Great topic…I will surely be posting on this later today…great idea …to write it all down on paper 1st.
Thanks,Abby!
God Bless,
Lori
Hi Gang:
My current Sx’s are:
Visual distrubances
head aches/pressure
eye pressure/pain
fullness in ears,hearing heartbeat in ears…swooshing sound
gait issues…feel off balance…limp…shuffle feet without realizing it
anxiety/depression
muscle twitches (occationally)
memory problems
tingling/numbness both hands
neuro pain in feet…MUCH better since decompression…happens occationally
nausea
no appetite…think it is due to nausea
since my memory is SHOT…i may have to post again on this!!!
God Bless,
Lori
Well… Since like Lori… My memory sucks… I decided to find a good list of symptoms and use them while deleting the ones on the list that I don’t have… So here ya go…
Headache (esp. if daily or at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or “halos” / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Ringing in ears (like the tone heard in a hearing test)
Pain when changing position
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremeties
Pain & tension along ear / eye / jawline
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Skin problems
Some of these have gone away since surgery and have not returned, and some of these have been returning over the past few years steadily… But now at least 90% of the symptoms I do still have from time to time… Someone mentioned on facebook that the list of symptoms according to the Chiari institute goes well over 100… and there were discussions on if they were all from the Chiari Malformation, or from overlapping illness’s… I guess noone will ever know for sure… Dr’s can’t even say… so thats where I am at for now…
hi all
here we go
headaches
dizzy spells
verdigo
numbness/tingling
ichyness
burning hands and feet
chest back pain/ burning back
elbow arm pain
hurts to swollow certain food/ feels like food gets stuck
weakness in muscules, heavy, sometimes cant lift a piece of toast
eyes out of focus
lightening bolts/stars in vision
pressure in head and neck, feel like going to pop
burning/numbness in mouth lips and tongue
Nausea
Fatigue
out of body sensation
wobbly
shortness of breath
urination problem, unable to finsh
high blood pressure
spiked heart rate/heart palpataions
concentration
slur words
difficulty remembering words,
urgency B/M, IBS
gagging during sleep
chocking during drinking fluids
flu like systoms
hot spells
forgetfulness
fog head
sexual dysfunction
electric shocks
muscle spasms
tingling
short temper/fuse
down moods, depression
lack of modivation
buzzing ears
eritation to breeze
lifting heavy objects
bending/exercise
heat,
singing causes pressure
eating chewy lollies
turning head to look at children, while driving
Popping / cracking sounds in neck
ticking in head like a clock
skin problems
ichy feet
loud noises
balance, keep causing minor spranes to ankle
throat issues
burning when touch head, like hair has been pulled very hard and cause bruising
tension behind eyes
well thats it i think
Yes, the surgery did help…I no longer have ‘drop foot’…however, at times I feel as though i am shuffling my feet and balance is off at times.
the pain /burning in my feet is much better…
shoulderblade pain is 75% better…But i don’t know if that is from the cervical fusion done before the Chiari operation…I also had hanother fusion done this past April.
My H/A’s are more pressure than stabbing pain now…the same goes for my eyes.
My eyes are worse now however…this is within the last yr…it has gotten this bad.
My irregular/rapid heart rate has gone away for the most part…happens occationally.
I use to get cramping in both my hands…that is pretty much gone…still have numbness and tingling but not as bad as before.
God Bless,
Lori
Abby said:
Lori, has your surgery helped a lot of the symptoms you use to have?
Abby said:Me too Lori, I have a bad memory problem today.
lori landi said:Hi Gang:
My current Sx’s are:
Visual distrubances
head aches/pressure
eye pressure/pain
fullness in ears,hearing heartbeat in ears…swooshing sound
gait issues…feel off balance…limp…shuffle feet without realizing it
anxiety/depression
muscle twitches (occationally)
memory problems
tingling/numbness both hands
neuro pain in feet…MUCH better since decompression…happens occationally
nausea
no appetite…think it is due to nausea
since my memory is SHOT…i may have to post again on this!!!
God Bless,
Lori
I actually began to write down my symptoms so that I can discuss them with the NS on 11-1-2010. This is my list and it seems to be pretty accurate and complete this far.
My Chiari symptoms
Headache (esp. daily & at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision
Tingling / numbness in the extremities (both legs and left arm)
General imbalance / clumsiness
Memory loss (short term)
Constant brain “fog”
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet (like walking on a waterbed)
Poor / degraded motor skills
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain (scoliosis)
Insomnia SEVERE
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position (sleeping)
Tingling / crawling feeling on scalp and down my spine
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremities (burn myself frequently)
Difficulty swallowing / lump in throat / sore throat
Spontaneous vertigo
Hand tremors / Head tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems/ Cyst in sinus
Decreased muscle tone / weakness in both legs
Pressure in right ear with frequent unreachable itch
Difficulty reading / focusing on text
Depth perception problems
Sharp stabbing sensation in left shoulder blades
Menstrual problems / severe cramping during period
Loss of sexual interest / lack of sensation in pelvic area
Slurred speech
Gag reflex problems
Loss of bladder control when I sneeze, cough
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations in arm and chest
Unequal pupil size
Popping / cracking sounds in neck and upper back when stretching
Dizziness
IBS
Chronic fatigue
Numbness in the tip of my tongue
Deviated septum
TMJ
Nausea- Loss of appetite/significant weight loss
Scoliosis 80 degree upper 60 degree lower curvature
rebekah that is a great list, i saw a fw things i missed out, lol
i hope it makes the doc, look at it, shove it in his face if you have to, or read it aloud and dont stop,
good luck
My symptoms are as follows in no particular order:
Migraines
Visual Disturbances/Blurry Vision
Occular Migraines
Nausea/Vomiting
Sensitive to light and sounds
Numbness/Tingling
Burning Sensations
Lightheadedness
Out of Body feeling
Fatigue
Neuropathic Pain
Ringing/Pressure in ears
Neck/Back/Shoulder Pain
Slurred Speech
Forgetfullness
Memory Problems
Brain Fog
Balance problems
Heart Palpitations
Lack of concentration
Short Temper
Depressed moods (when in pain)
Pressure in head
Tension/Pain behind eyes
Jaw tightness/Hoarse voice (inability to sing or yell with ease)
Muscle Spasms
Chest Tightness (pressure)/Pain
Swallowing difficulties
I think that might be it, and if it’s not it sums up a good bit. Hope everyone is having a good day 
Great List Rebekah!! You named some that I forgot to add 
Rebekah said:
I actually began to write down my symptoms so that I can discuss them with the NS on 11-1-2010. This is my list and it seems to be pretty accurate and complete this far.
My Chiari symptoms
Headache (esp. daily & at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision
Tingling / numbness in the extremities (both legs and left arm)
General imbalance / clumsiness
Memory loss (short term)
Constant brain “fog”
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet (like walking on a waterbed)
Poor / degraded motor skills
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain (scoliosis)
Insomnia SEVERE
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position (sleeping)
Tingling / crawling feeling on scalp and down my spine
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremities (burn myself frequently)
Difficulty swallowing / lump in throat / sore throat
Spontaneous vertigo
Hand tremors / Head tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems/ Cyst in sinus
Decreased muscle tone / weakness in both legs
Pressure in right ear with frequent unreachable itch
Difficulty reading / focusing on text
Depth perception problems
Sharp stabbing sensation in left shoulder blades
Menstrual problems / severe cramping during period
Loss of sexual interest / lack of sensation in pelvic area
Slurred speech
Gag reflex problems
Loss of bladder control when I sneeze, cough
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations in arm and chest
Unequal pupil size
Popping / cracking sounds in neck and upper back when stretching
Dizziness
IBS
Chronic fatigue
Numbness in the tip of my tongue
Deviated septum
TMJ
Nausea- Loss of appetite/significant weight loss
Scoliosis 80 degree upper 60 degree lower curvature
that is a great list, i too didnt list short temper, and when it goes man it goes, lol the world watch out
good advice abby
i try not to let it lose,
hi all
i thought i would restart this going again, it would be interesting what has changed for the ones who have done this in september 2010,
here we go
headaches
dizzy spells
verdigo
numbness/tingling
ichyness
burning hands and feet
chest back pain/ burning back
elbow arm pain
hurts to swollow certain food/ feels like food gets stuck
weakness in muscules, heavy, sometimes cant lift a piece of toast
eyes out of focus
lightening bolts/stars in vision
pressure in head and neck, feel like going to pop
burning/numbness in mouth lips and tongue
Nausea
Fatigue
out of body sensation
wobbly
shortness of breath
urination problem, unable to finsh
high blood pressure
spiked heart rate/heart palpataions
concentration
slur words
difficulty remembering words,
urgency B/M, IBS
gagging during sleep
chocking during drinking fluids
flu like systoms
hot spells
forgetfulness
fog head
sexual dysfunction
electric shocks
muscle spasms
tingling
short temper/fuse
down moods, depression
lack of modivation
buzzing ears
eritation to breeze
lifting heavy objects
bending/exercise
heat,
singing causes pressure
eating chewy lollies
turning head to look at children, while driving
Popping / cracking sounds in neck
ticking in head like a clock
skin problems
ichy feet
loud noises
balance, keep causing minor spranes to ankle
throat issues
burning when touch head, like hair has been pulled very hard and cause bruising
tension behind eyes
TIA???
face spasms
arm aching
lifting anything (bottle of milk)
I’ve experienced at one time or the other a good portion of the symptoms which everyone has mentioned. So, I’ll just mention the ones which have given me the most trouble as far as impacting my daily life. For me the worst part initially was the really, really, really, really (not really enough reallys) bad headaches, vertigo, dizziness, foggy feelings, pressure in the head and nose, and falling a lot. I’ve had times of numbness and loss of sensation too, but for the most part I could still function even if was with a walker or a wheelchair. For me the other stuff was the worst. A lot of them have either gone away or improved since my surgery…so it’s good. I do still experience a lot of pain in my lower back, although some of it went away after the surgery. I have slipped disks, so don’t know what’s really causing that. I react strongly to loud noises - but that has mostly been since 9/ll when I was in the Pentagon when it was hit by the plane. Now that was a loud noise and a scary day!!! Even though the plane landed in our suite of offices, they had moved us out of that area to renovate the space…how lucky can I be!
I am new to the group and am so... glad to see your symptoms listed. I have been unsuccessful in finding a doctor who has half a clue as to why I have these symptoms. I have just found a doctor in Auburn, Alabama about 2 hrs. away from my home who has much experience in dealing w/chiari's and has performed more than 800 decompressions (Dr. Lee Warren). I will see him in late April. Thank you for posting this. After reading your symptoms, I'm not feeling like I am crazy since most of you are experiencing the same thing. My symptoms are:
headaches in the back of the head (worse upon awakening)
blurred vision/seeing silver spots
numbness/tingling in arms and hands
burning in the back of the neck
tachycardia/palpitations
balance problems (feel like I am walking on a trampoline at times, sometimes feel like I am walking in a horizontal position and sometimes when driving on a staight, flat road, feels like I am driving on a roller coaster)
swallowing problems/get choked easily/have loss of gag reflex
facial swelling (worse upon awakening in the morning)
frequent hoarseness
Memory problems (sometimes severe)
scoliosis
slurred speech at times
I use the term lucky but I know I'm blessed. As I've said many times, I think everything happens for a reason and prayer is not always answered in the way we may want it to be. Sometimes the answer is for the better good and not just for us.
Hugs
Shirley
Carla Stone said:
Shirley,
Wow! What an experience at the Pentagon! That probably is why you react to loud noises,it certainly makes sense! I had horrible headaches that also lessened after surgery. I think we all have similar symptoms to different degrees. I am so glad that yours seemed to get better after surgery. Some of my symptoms just seem to pop one day and go away the next. The randomness gets to be frustrating and makes it difficult to plan too much. But we all should only be taking one day at a time anyway, so I guess that's okay, right? I don't think you are as lucky as you are blessed:)
Love,
Carla
Susan, so sorry about your friends. I worked for the military for about 30 years and I know that people who serve the country sacrifice a lot…thank you for your service. Blessings to you Shirley
Susan Erickson said:
Shirley,
I agree with Carla, PTSD, can make you jumpy....I don't do well with loud noises, sometimes thunder can have me diving for the floor....I was in Desert Storm, Twice....So, yeah, understandable with the loud "cracking" sounds....reminds me of tanks firing or Mark 19's shooting.....
I also had 4 friends who were killed who also worked at the Pentagon. It was a horrible event 9/11....One that should have been avoided but I don't talk politics...You were certainly blessed....Carla is absalutely right, your blessed, luck has nothing to do with it....The good lord runs this show....Only he knows when it's "our time".....I've lived through stuff I certainly shouldn't have so I know it's true....It's on HIS time, not ours!!!!
We're all also blessed to have each other....We get each other through the rough times, that is so important....We all suffer, yet, we are strong for each other and that makes all the difference in all our journies.....I'm thankful for anyone who has had surgery and is now out there living and has a GOOD quality of life.....I don't wish this suffering on anyone.....But, fact is, most of us DO suffer...To some extent...We're all just as different when it comes to symptoms and suffering....But, together, we are united as most of us can understand. We've all had so many symptoms at one time or another or constantly, so no matter what....We've all been through all of it to some degree!!!!
I'm blessed to have all of you in my life and I thank the Good Lord for Each of you every single day!!!
Much, Much Love,
Susan
Great topic!!! My major symptoms and the ones that really make me say somethings up, this isn’t normal is… Blind spots and flashes that come and go some days it’s multiple times a day and some days nothing, muffled ears,neck and shoulder aches headaches everyday just about ranging from annoying ache to I’m done for then day! Lol weakness and fatigue . These r the major ones that make me feel like somethings wrong. Then I read everyones list and I’m blown away how many I have experienced or am currently experiencing! I had no idea that these could b linked to cm so I never include them in when I talk to the dr thanks guys!!
ohhhn susan, i hope your ok, sounds like your having a bad time,
it was interesting re rereading all the new members posts of symtoms,