"LIMBO LAND" Symptoms for Chiari Malformation(CM),Tethered Cord(TC) and Ehlers-Danlos (EDS)

Symptoms for Chiari Malformation,
Tethered Cord and Ehlers-Danlos Syndrome

People with Chiari Malformations may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The most common Chiari symptoms include: Severe Headache and Neck Pain Pain at the back of the head that is aggrivated by coughing, sneezing, straining etc. Dizziness Vertigo Disequilibrium Visual disturbances Ringing in the ears Difficulty swallowing Heart palpitations Sleep apnea Muscle weakness Impaired fine motor skills Chronic fatigue Painful tingling of the hands and feet ("Pins & Needles") Other Chiari symptoms may include: Nystagmus Memory loss Restricted movement Intolerance to bright light / difficulty adjusting to light change Difficulty walking on uneven ground / feeling ground under feet Difficulty driving Difficulty negotiating steps Pressure / pain behind the eyes (soreness in the eyeballs) Back pain Neck spasms Insomnia Swaying Pain when changing position Tingling / crawling feeling on scalp Intolerance to loud or confusing sounds Decreased sensation to touch in extremeties Decreased sensitivity to temperature Pain & tension along ear / eye / jawline Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes Drooling 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 or focusing on text Depth perception problems Burning sensation in extremeties / shoulder blades Menstrual problems / severe cramping during period Fluid-like sound in ears (like water running) Loss of sexual interest / lack of sensation in pelvic area Pulling sensation while sitting / standing Intense itchiness w/profuse sweating Slurred speech Gag reflex problems / lack of gag reflex Pressure / tightness in chest Loss of bladder control Frequent urination Dehydration / excessive thirst Electric like burning sensations Unequal pupil size Loss of taste Popping / cracking sounds in neck or upper back when stretching Dizziness Loss of smell / problems with sense of smell Dry skin and lips Abrupt changes in blood pressure Hiccups Skin problems Tethered Cord symptoms: Urinary urgency Frequency of urination Urinary incontinence Urinary retention Frequency of urination at night Difficulty starting urinary stream Constipation Diarrhea Occasional incontinence for stools Decrease interest in sexual relations Difficulty reaching an orgasm Decreased sensation in your pelvic area Low back pain Leg pain Numbness under the soles of your feet Keeping your knees bent at night Low back pain, leg pain, or urinary symptoms while walking up stairs History of severe growing pains during childhood and adolescence Ehlers-Danlos (EDS) Symptoms: Joint hypermobility Loose/unstable joints prone to frequent dislocations and/or subluxations Joint pain Hyperextensible joints (movement beyond normal range) Early onset of osteoarthritis Soft velvet like skin Skin hyper-extensibility Fragile skin that tears or bruises easily Severe scarring Slow and poor wound healing Molluscoid pseudo tumors Less Common EDS symptoms include: Early onset of chronic/debilitating musculoskeletal pain Arterial/intestinal/uterine fragility or rupture Scoliosis at birth and scleral fragility Poor muscle tone Mitral valve prolapse Gum disease WELL, I WENT THROUGH  THE FIRST LIST OF CHIARI MALFORMATIONS SYMPTOMS...AND I DO HAVE 13 OUT OF 14 THAT WERE LISTED. NOW, THE NEXT LIST OF CM SYMPTOMS, I HAVE 47 OUT OF 52 THAT ARE LISTED AND TO ME, THAT IS A LOT. WHEN IT COMES TO THE TETHERED CORD SYMPTOMS, I DO HAVE A FEWER NUMBER OF SYMPTOMS.(11 OUT OF 18).  I KNOW, IT SOUNDS BRASS, BUT I WAS KIND OF HOPING THAT I COULD HAVE BEEN DX WITH THE TC, INSTEAD OF THE CM, BUT THE REASON WHY...IS BECAUSE, WHEN U HAVE THE TC SURGERY, IT USUALLY OR SOMETIMES...REPAIRS THE CM. NOW, I GOT THIS INFORMATION OFF OF "THE DOCTORS" SHOW AND WOULDN'T REPEAT THIS INFORMATION OTHERWISE, UNLESS IT COME FROM A RELIABLE SOURCE.  THEY ACTUALLY, SHOWED THE "TC" SURGERY AND WHEN THE DOCS OF THIS PATIENT, RELEASED THE TC, IT MADE THE SPINAL CORD RECEED BACK UP THE SPINE, WHICH..THEN, IN TURN MADE THE CM SURGERY, NOT NECESSARY. I WOULD GO TO "THE DOCTORS" WEBSITE AND LOOK IT UP AND CHECK IT OUT FOR URSELF, TO GET A GOOD COMMPREHHENSIVE VIEW OF THE ACTUAL SURGERY. TO ME, IT IS AN INTERESTING THEORY TO HAVE CHECKED OUT, IF U R NOT SURE, IF U HAVE A TC OR NOT. THE CM HAS ALREADY BEEN DIAGNOSED, FOR ME, BUT I STILL WOULD LIKE TO KNOW, IF THERE IS A POSSIBILITY OF ME HAVING A TC.  I HAVE TO ACCEPT IT WHAT IS GOING ON WITH ME AND JUST FACE THE FACTS, WHETHER I WANT TO OR NOT...THAT THERE IS  STILL SOMETHING NEUROLOGICALLY WRONG SOMEWHERE AND ALTHOUGH, THE CM SOUNDS LOGICAL, I JUST CAN'T SHAKE THAT THEY CAN'T SEE BEHIND MY TITANIUM PLATES, FROM A C5-C6 SPINAL DISKECTOMY THAT WAS DONE BACK IN '06. NO ONE IS GETTING A GOOD IMAGE AND THERE IS AN ARTIFACT THAT IS STANDING IN THE WAY, FROM THE PLATES AND I EXPERIENCE SO MUCH PAIN IN MY NECK/FACE/BACK/LEGS...HECK, I HURT EVERYWHERE!!  I REALLY WANT TO GET THE PLATES OUT, because..IF, THERE IS ANYWAY THAT I CAN MAKE SURE THAT IT IS NOT MY SURGERY THAT IS THE PROBLEM FIRST...IT CAN ELIMINATE THE PROBLEM COMING FROM THE CM. I HAVE BEEN TOLD THAT I HAD A SCREW THAT HAS BEEN PLACED RIGHT ON TOP OF A NERVE AND IF, I DIDN'T GET THE TITNIUM PLATES OUT...I WOULD LOSE THE USE OF MY ARMS AND LEGS.(MUSCLES WOULD JUST CEASE TO EXIST OR TO BE IN USE) IT HAS BEEN A 6 YEAR WAITING GAME THAT IS GETTTING REALLY SCARY, BECAUSE I CAN'T MAKE A FIST WITH MY LEFT HAND NOW AND IT IS ALMOST IMPOSSIBLE FOR ME TO LIFT MY LEFT ARM UP AND HOLD IT FOR ANY AMOUNT OF TIME. THE MUSCLES JUST WON'T HOLD IT UP AND MY ARM/HAND SHAKES. MY LEFT LEG HAS BEEN AFFECTED, AS WELL. IT SHAKES NOW AND TREMBLES, IF I AM JUST TRYING TO SIT AND LIFT MY LEG UP LEVEL AND OUT STRAIGHT. I HAVE ALSO NOTICED THAT I CAN'T LOCK MY LEGS OR STAND UP COMPLETELY STRAIGHT...IT HURTS TOOO BAD. I WONDERED IF STAYING IN BED FROM ALL OF THE PAIN HAS CAUSED MY LIGAMENTS TO TIGHTEN OR SOMETHING, THEREFOR THE REASON WHY, I CAN'T KEEP THEM STRAIGHT. IF, I AM IN BED, WHICH SEEMS TO BE MOST OF MY DAY...MY LEGS ARE ALWAYS BENT. IT SEEMS LIKE MY HAMSTRINGS ARE ALWAYS TIGHT. AS A MATTER OF FACT, I WENT TO SEE MY GYNO AND HE NOTICED AFTER I PULLED MY LEGS UP ON THE TABLE THAT MY LEGS SHOOK. HE FELT OF THE HAMSTRING AREA AND TOLD ME RIGHT THERE...U HAVE A LOT OF NEUROLOGICAL ISSUES GOING ON. I DON'T KNOW HOW HE KNEW, BY THAT...BUT, HE WANTS ME TO SEE ANOTHER NEUROLOGIST THAT HE RECOMMENDS IS GOOD. I TOLD HIM THAT I WOULD SEE HIM, IF HE COULD HELP ME IN SOME WAY FIND THE ANSWER TO THIS AGONIZING MYSTERY THAT I HAVE BEEN DEALING WITH FOR SOOO LONG. I ALSO, HAVE BODY PAIN/TREMORS/SPASMS/CRAMPS/NUMBNESS/PINS/NEEDLES/BURNING/ITCHING/ ETC..... I CAN'T SEEM TO GET AN ANSWER TO ALL OF IT...YET. I JUST WANT THINGS REPAIRED...IN THERE...SO, I CAN GET BACK TO THE LAND OF THE LIVING, INSTEAD OF "LIMBO LAND"...arrgghhh!! U BETTER BELIEVE THAT I AM GONNA DO EVERYTHING IN MY POWER, TO GET IT CHECKED OUT...TO MAKE ABSOLUTELY SURE THAT IT ISN'T A TETHERED CORD, INSTEAD OF THE CM THAT IS CAUSING ALL OF MY SYMPTOMS, BEFORE I HAVE ANY KIND OF SURGERY...AND NO MATTER WHAT. I HAVE GOT TO GET A DIAGNOSIS TO WHAT IS CAUSING ALL OF THIS. I HAVE A WASTEBASKET FULL OF SYMPTOMS THAT I AM EXPERIENCING...AND SOMETIMES, I FEEL THAT MY BODY IS IN SO PAIN THAT I JUST DON'T KNOW WHAT I AM GONNA DO.:P WHAT MAKES IT SO BAD IS...THERE ARE THINGS OUT THER...THAT HAVE SIMILAR SYMPTOMS TO ALL OF THIS...AND THEY HAVE TO BE RULED OUT TOO...RIGHT ALONG WITH ANYTHING ELSE. I ALMOST HAVE EVERYONE OF THE SYMPTOMS TOO, FOR MOST OF THIS STUFF...WHICH, IT MAKES IT SO VERY VERY OVERWHELMING SOMETIMES. I FEEL THEM EVERYDAY AND SOMETIMES, I CAN GET FRUSTRATED BY IT...AND IT DOESN'T SEEM FAIR, WHEN ALL I WANT IS TO GET WELL AND BE ABLE TO BE A MOM AND WIFE...AGAIN. I KNOW, IT IS HARD FOR THEM TO UNDERSTAND, BUT I AM DOING THE BEST THAT I CAN.:(( I AM THINKING SERIOUSLY @ HAVING THE SURGERY ON MY CM, BUT WASN'T LOOKING FORWARD TO HAVING ANY BRAIN SURGERY...BUT THAT IS WHAT THEY DO, IF U HAVE A CM THAT IS CAUSING SEVERE SYMPTOMS. I ACTUALLY KNOW OF A SWEET GIRL ON A SITE THAT HAD THE SURGERY. SHE HAS PICS OF IT AND SHE WAS CUT FROM THE CROWN OF HER HEAD TO THE BASE OF HER NECK. WOW, I AM NOT LOOKING FORWARD TO ANY OF THAT, BUT I AM GOING TO MAKE SURE...IF, ANY WAY POSSIBLE THAT IT IS NOT MY SURGERY FIRST. I AM JUST LOOKING FORWARD TO HAVING A LIFE AGAIN THAT IS BETTER...ONE THAT I CAN BE PRODUCTIVE AND MAKE GOALS AND ACHIEVE THEM ONCE MORE...IF IT IS "THE LORD WILL".:D ANY PATIENT THAT IS EXPERIENCING NEUROLOGICAL SYMPTOMS AND SHOWING SIGNS OF DEFICITS OF 5.5mm OR OVER(mine is 6.5), COULD BE A CANDIDATE FOR THE SURGERY. I HAVE TO SAY THAT IT CAN ...BE JUST TOO MUCH TO DEAL WITH, AT TIMES, BUT I AM A STRONG INDIVIDUAL AND HAVE PUT UP WITH SO MUCH PAIN THAT I AM TIRED NOWAND JUST WANT TO BE ABLE TO RELAX...WITHOUT ALL OF MY MUSCLES BEING KNOTTED UP!! MY SYMPTOMS ARE MOST DEFINITELY BAD ENOUGH AND HARD TO DEAL WITH, FOR I CAN BARELY GET AROUND THE HOUSE GOOD, MUCH LESS GO ANYWHERE. I SOMETIMES CAN WALK OVER TO MY MOM/DAD'S HOUSE, WHICH IS @ 50FT. OR SO AWAY FROM MINE. SOMEDAYS, I CAN'T EVEN GET OUT OF THE BED GOOD, OR AT ALL AND MOSTLY THAT IS BECAUSE, I GOT UP AND WALKED OR DID SOMETHING THE DAY BEFORE...AND U BETTER BELIEVE THAT I AM GOING TO PAY FOR IT, BUT I MUST SAY THAT I DO STILL USE THOSE MUSCLES OR TRY, WETHER THEY HURT OR NOT. I DO NOT WANT TO HAVE TO RESORT TO A WHEEL CHAIR...NOT YET. IF, I DO GET TO GET OUT AND HAVE A DECENT DAY...I AM EVER SO GREATFUL. MY GOOD DAYS ARE FEW AND FAR BETWEEN, BUT I AM THANKFUL THAT I STILL CAN THINK....some...hehe. AND I DO HAVE A HEART THE SIZE OF TEXAS.:D I GET SO FRUSTRATED, JUST WHEN JUST TRYING TO PULL THE CLOTHES OUT OF THE WASHER OR DRYER...AND WASHING A DISH IS ALMOST OUT OF THE QUESTION, BECAUSE I HAVE TO STAND IN ONE SPOT...AND IT LOOKS LIKE MY BODY IS DOING CONTORTIONS OR SOMETHING. I SAY THAT BECAUSE MY HANDS AND FEET WILL TURN OR TWIST AND I HAVE NOTICED MY HANDS WILL BALL UP, AS WELL. WHEN I STAND ON MY LEGS TOO LONG OR BETTER YET....TRY AND PICK SOMETHING OFF OF THE FLOOR..YOWWWCH!! IS WHAT I FEEL...MY HAMSTRINGS ALMOST KILL ME AND WHEN, THIS FIRST HIT ME BACK IN '03, I WAS IN ALMOST THE BEST SHAPE OF MY LIFE. I WASN'T OVERWEIGHT, I WORKED 60+ HRS. A WEEK...SO, I KEPT MOVING AND WORKING, UNTIL I GOT TO WHERE I COULDN'T FIND A PLACE TO REST MY HEAD AT NIGHT. I KEPT MOVING MY HEAD ON THE PILLOW, BUT I COULD REACH, BEND, PULL, PUSH...THEN, BUT AFTER THAT SURGERY, IN MY NECK....EVERYTHING CHANGED. SO, I AM THINKING IT IS THE CULPRIT OF THE NEUROLOGICAL ISSUES.  THE ADDISON'S THAT I HAVE ALSO BEEN DIAGNOSED WITH HAS GIVEN ME A LOT OF SYMPTOMS, BUT THE DON'T CORRELATE TO THE OTHER SYMPTOMS THAT I HAVE. SO, THEREFOR...I HAVE BEEN DEALING WITH MORE THAN ONE THING HERE, FOR THE PAST 10 OR MORE YEARS, BUT KEPT ON PUSHING MYSELF, UNTIL I GOT TO WHERE SOMETHING HAD TO BE DONE. ANY MOVEMENTS THAT I MAKE DURING THE DAY ARE SO HARD, ON ME AND IF, ANYONE CAN TELL OR CAN SEE IT..I AM SURPRISED, FOR I REALLY TRY NOT TO SHOW IT, UNLESS IT IS SO UNBEARABLE THAT I CAN'T HIDE IT.:(( IT TAKES MANY MUSCLES, JUST TO GET URSELF UP AND OUT OF BED, BUT I PUSH MYSELF EVERY SINGLE DAY, JUST TO BE ABLE TO DO WHAT I CAN DO...ESPECIALLY, IF EVERY MUSCLE HURTS ALREADY WITHOUT ANY MOVEMENTS.  U CAN SEE NOW...JUST WHY I HAVE BEEN CONCERNED, FOR SO LONG. I HAVE BECOME SO WEAK IN MY LEFT ARM AND HAND THAT I CAN'T EVEN MAKE A FIST NOW.  IT HAS BEEN WEAK FOR A WHILE NOW AND AT FIRST, I JUST WOULD DROP ANYTHING THAT MY LEFT HAND HELD...AND THE RIGHT, FOR THAT MATTER. MY NEUROLOGIST IS LOOKING HARD TO TRY AND FIND THE DEFINTE ANSWER. HE DOESN'T WANT TO ADMIT THAT IT COULD EVEN POSSIBLY BE "MS", BUT AS HE SAID..."lET'S NOT GO THERE RIGHT NOW."IT IS HARD TO TYPE, BUT EVEN HARDER TO WRITE...BECAUSE I GET WRITER'S CRAMP...BAD. WHAT WORRIES ME MOST IS THAT I AM OVER THE NEUROLOGICAL DEFICITS...SO, I WILL PROBABLY WIND UP HAVING THE SURGERY AFTER ALL, FOR I CAN'T GO ON LIVING MY LIFE THIS WAY.   THE EHLERS-DANLOS: IT HAS 11 SYMPTOMS LISTED AND I HAVE THEM ALL, BUT 2 OF THEM...and THOSE TWO ARE THE SKIN OR JOINT HYPEREXTENSIBILITY SYMPTOMS. I KNOW, IT IS WHERE U CAN PULL UR FINGER OR JOINT BACK SO FAR THAT IT RESTS ON ANOTHER PART OF UR BODY...AND LUCKILY, I CAN'T DO THAT...hehe. SO, I DON'T UNDERSTAND AND WILL HAVE TO LOOK THIS UP MYSELF, BUT CAN U HAVE ALL THE SYMPTOMS OF EDS, BUT LACK THE HYPEREXTENSIBILITY AND STILL POSSIBLY HAVE IT? I COULD NEVER PULL MY FINGERS OR ANYTHING ELSE BACK TO MY WRIST OR ANY OTHER JOINT, FOR THAT MATTER, BUT I AM DOUBLE-JOINTED. AS I GREW UP, I DID NOTICE THAT I HAVE ALWAYS BEEN UNCORDINATED AS A KID, MY BODY ALWAYS FELT LIKE IT WAS OUT OF PORPORTION. THE EXTENDED LIST FOR EDS, SHOWS MORE SYMPTOMS AND THE ONES THAT ARE THE WORST FOR ME. I HAVE THE CHRONIC/ DEBILITATING MUSCULOSKELETAL PAIN AND IT IS ONE THAT I CAN REALLY RELATE TO, BECAUSE IT FEELS LIKE MY PAIN GOES ALL THE WAY DOWN, TO THE BONE. I AM HAVING A BONE MARROW TEST DONE SOON, SO MAYBE, I CAN AT LEAST RULE OUT ANYTHING THERE. I PRAY TO GOD THAT THE ONES OUT THERE, WHO ARE SUFFERING, TO BE STRONG AND TO HOLD ON TO THE LORD...FOR HE WILL ALWAYS BE WITH U...AND WILL COMFORT U, IN UR TIME OF NEED. JUST REMEMBER TO PRAY AND ASK HIM TO HELP U...AND IF, IT IS "HIS WILL", HE WILL COMFORT U.:D I THANK HIM, FOR HE IS GETTING ME THROUGH ALL OF THIS with HIS LOVE...AND HIS COMFORT.:))<3 Karen