A needle in a HAYSTACK!!!

IF LIFE, ISN'T HARD ENOUGH...UR HEART IS HEAVY TOO...AND I FEEL LIKE
"A NEEDLE IN A HAYSTACK"


I HAVE MY FAIR SHARE OF PROBLEMS.
I HAVE BEEN DIAGNOSED WITH DDD OF THE CERVICAL, LUMBAR & HIP/JOINT AND DO HAVE 4 HERNIATED DISKS IN MY THORACIC(T8-T11), WITH T 10-T11 HAVING HYPERTROPHY,CHIARI MALFORMATION 6.5mm, SPONDYLOSIS, MYOFASCIAL PAIN SYNDROME, VENOUS ANOMALLY IN MY LEFT CEREBULLAR HEMISPHERE, "EMPTY SELLA", T3-T4 COMPRESSED FRACTURE, CERVICAL RADICICULOPATHY, PERIPHERAL NEUROPATY, PRE-DIABETIC, HIGH CHOLESTORAL, SCIACTICA, FIBROMYALGIA AND ALLERGIES.
SO, I AM BASICALLY FALLING APART, BUT I AM NOT GIVING UP. NO, I AM A FIGHTER. U HAVE TO BE TO BE A SURVIVOR...

HAVING TO STAY IN BED IS NO LUXERY AND IT SURE ISN'T ANY FUN TO BE STUCK HERE...LIKE "A NEEDLE IN A HAYSTACK"...  I AM LOST IN A SEA OF PAIN, BUT I KNOW, I DO HAVE MORE THAN SOME HAVE...AND AM TRULY BLESSED. SO. I AM GRATEFUL THAT I DO AT LEAST, HAVE MEANS OF COMFORT...THAT HELPS ME MAKE IT THROUGH ANOTHER DAY. I KNOW, THERE ARE SOME DON'T HAVE ANYTHING...AND I PRAY FOR THEM TO RECIEVE COMFORT...AND LOVE FROM THOSE AROUND THEM, BUT MOST OF ALL LOVE. IF, A PERSON DOESN'T HAVE THAT....THEN, IT IS MUCH HARDER :P


A COUPLE OF DAYS AGO, I TRIED TO DO SOME LIGHT HOUSE WORK...AND I BENT OVER...ARGHHH, MY BACK IS PAYING FOR WHAT I DONE. WELL, I JUST CAN'T STAY STILL IN THIS BED. I HAVE TO GET UP SOMETIMES AND WHEN, I DO...I FIND SOMETHING THAT NEEDS TO BE DONE...THEN, OUCHHHH, I PAY.
I ALSO HAVE A T3-T4 COMPRESSION FRACTURE THAT IS VERY PAINFUL AS WELL AND ADDED TO THAT MISERY ON ITSELF...IS THE ACD & F SPINAL DISKECTOMY SURGERY THAT IS ALWAY TENDER AND CAN'T BE TOUCHED, BUT THE DOCS DON'T SEEM TO THINK THAT THERE IS ANYTHING WRONG THERE. WELL, WHERE THERE IS PAIN...THERE IS A PROBLEM AND I HAVE SUFFERED SINCE, I HAD THE SUGERY DONE AND WAS TOLD BY OTHER NEUROSURGENS THAT I DIDN'T EVEN NEED THE SURGERY IN THE FIRST PLACE.
THE SURGERY WAS DONE BACK IN '06 AND IT ONLY COMPRESSES THE ISSUE OF THE T3-T4 COMPRESSED FRACTURE. I WOULD BE WILLING TO BELIEVE THAT WHEN, THEY DID THE SURGERY AND LEFT THE T3 AND T4 LIKE IT WAS....OR WHY DIDN'T THEY FIX IT WHILE THEY WERE THERE? WHY WASN'T I AWARE OF IT, ONLY AFTER I READ IT ON PAPER...A YEAR LATER. WHY DON'T SOME DOCTORS TELL U WHAT IS GOING ON...AND NOT WAIT UNTIL, U THE PATIENT IS SUFFERING TO NO END. STILL, THEY DON'T SEEM TO HELP, ONLY CUT ON U AND MESS U UP, THEN, NO ONE ELSE WANTS TO TOUCH U OR HELP U.
I AM JUST ANGRY THAT I HAVE SUFFERED SO LONG AND THE ORIGINAL SURGEON (NS) HAS IGNORED MY PLEAS FOR YEARS. NOW, IT LOOKS LIKE IT IS ALL COMING BACK TO THE SURGERY. YES, THERE IS SOMETHING WRONG IN THERE...I FEEL IT!!
I WILL SCRATCH, CLAW, ACHE MOAN AND EVEN YELP OUT AT TIMES, ALL DAY FROM THE PAIN IN MY NECK..YET, I CAN'T GET ANYTHING DONE.
NO ONE CAN GET A GOOD VISUAL OF JUST WHAT IS GOING ON IN MY NECK. THEY ONLY SEE AN ARTIFACT AND THAT IS ONLY, A BLACK HOLE THAT IS SEEN. THEY CAN'T SEE THE NERVE THAT IS BEING PRESSED IN MY NECK AND IT IS KILLING ME!!!
I AM A MOTHER, WHO IS STUCK IN BED...AND MY KIDS HAVE NEEDED ME FOR YEARS...YET, HERE I AM PINNED LIKE "A NEEDLE IN A HAYSTACK"...AND THAT IS HOW I FEEL. I AM LOST IN A SEA OF PAIN AND ONLY WANT TO BE ABLE TO STAND ON MY OWN TWO FEET...AND BE THE MOTHER I ALWAYS WAS...AND STILL AM.:P

THIS IS A PIC OF ME AND MY OLDEST SON SHANE. HE IS HAVING A PROBLEM WITH UNDERSTANDING WHAT I AM GOING THROUGH, SINCE HE DOESN'T SEE ME EVERYDAY. HE DOESN'T LIVE THAT CLOSE TO ME, AT ALL. HE HAS CHOSEN TO STAY AWAY FROM ME...BECAUSE HE IS ANGRY AND I AM SO HURT AND DON'T UNDERSTAND WHAT I NEED TO DO. I AM SEVERLY DISABLED, SO I CAN'T GO OR DO ANYTHING, BUT HE WILL UNDERSTAND, ONE DAY.:P
THIS CANDLE, HE GOT ME FOR CHRISTMAS, BACK YEARS AGO, BUT I LIGHT IT ON EVERYONE OF HIS BIRTHDAYS, TO CELEBRATE IT AND I THINK, OF ALL THE YEARS THAT WE WERE APART AND HOW, IT WASN'T MY FAULT OR HIS...THAT HE IS NOT WITH ME. HE WAS TAKEN FROM ME.

WE HAD A GOOD FAMILY THAT WERE HONEST PEOPLE THAT LOVED THE LORD. HE WAS A GREAT KID THAT WAS SO QUIET AND BASHFUL, BUT WE DID THINGS TOGETHER...LAUGHED AND CRIED TOGETHER. HE PLAYED T-BALL AND IT JUST WASN'T HIS THING, BUT FISHING...WE BOTH LOVED IT AND WE WENT TOGETHER EVERY CHANCE WE GOT. WE WOULD FISH UNTIL THE SUN WENT DOWN AND WHERE WE COULDN'T EVEN SEE THE CORK...hehe.:D
WE HAD A GOOD LIFE THAT WAS GOING SO WELL, BUT THAT WAS INTERRUPTED, WHEN HE TOLD ME HE WAS ABUSED. I STOOD UP FOR HIM AND FAUGHT FOR HIM TO BE SAFE...AND IT EVEN WENT TO THE COURTS, BUT SINCE THE OTHER PARTY HAD A JUDGE, FOR AN UNCLE AND ALL SORTS OF PULL AND THE MONEY TO FIGHT, THEY GOT CUSTODY OF MY SON...MY LIFE!!!
WHILE ALL OF THIS WAS HAPPENING...I WAS EXPECTING ANOTHER SON, AT SAME TIME.(8mos). I WAS IN A MESS OF WORRY OVER WHAT HAD HAPPENED TO MY SHANE, BUT DID ALL THAT I COULD TO PROTECT AND SAVE HIM FROM ANY MORE THAT HE MIGHT HAVE TO FEEL..IT WASN'T ENOUGH, I GUESS, FOR HIM TO UNDERSTAND THAT I WASN'T THE BAD GUY HERE...I ONLY LOVED HIM..  

WE WENT THROUGH ALL THE COURT STUFF, IN WHICH I HATED, BUT THEY NEVER FOUND ME TO BE UNFIT OR UNTSTABLE. NO, THE DOCUMENT THAT WAS SENT BY MAIL...JUST SAID,
"I WOULDN'T GIVE UP THE ABUSE ALLEGATIONS...THAT IT WOULD CAUSE TORMOIL BETWEEN THE FATHER AND SON."
THIS WAS ALL THAT THE DECISION READ.
BEFORE, I GOT THIS ANSWER...I HAD TO WAIT FOR 2 WEEKS TO FIND WHAT WOULD BECOME OF MY SON.
WHEN, WE WERE IN COURT...THEY DIDN'T READ IT ALOUD THE DECISION...NO...I HAD TO WAIT UNTIL, THEY SENT THE DECISION IN THE MAIL, BUT WHEN IT DID COME...I FELL TO MY FEET AT THE MAILBOX. I WAS OUT OF MY MIND, AT THAT MOMENT. I JUST GOT INTO MY CAR AND DROVE TO MY MOMS HOUSE, IN WHICH...SHE WAS ONLY A COUPLE OF MILES AWAY THEN...
WHEN, I ARRIVED...JUST THE LOOK ON MY FACE TOLD HER THE ANSWER THAT SHE WAS OH SO DREADING TO HEAR. SHE WENT CRAZY AND STARTED TEARING THE HOUSE UP....BREAKING LAMPS AND RIPPING THE PHONE, BASICALLY FROM THE WALL. HER BLOOD PRESSURE HAD GOT SO HIGH AND I HAD TO CALL 911 AND I WAS AFRAID THAT I WOULD LOSE MY MOM TOO.
THIS WAS TOO MUCH FOR ME TO DEAL WITH...BECAUSE I WAS ALREADY AT THE WORST POINT IN MY LIFE AND SHE, BASICALLY RAISED HIM LIKE HE WAS HER SON TOO. SO, WE BOTH LOST SOMEONE NEAR AND DEAR TO OUR HEARTS THAT DAY. WE KNEW, LIFE WOULD NEVER BE THE SAME...AND IT WASN'T!!

IT WAS WAY TOO MUCH FOR ME TO TAKE IN THAT DAY, BUT IT DOESN'T MEASURE TO ALL OF THE PAIN THAT COME TO HIS OR MY HEART AFTER THAT. I THINK, FOR 5 YEARS, I WALKED AROUND LIKE A ZOMBIE OR IN A DAZE FROM THE BEWILDERMENT OF IT ALL...
FOR THE PAIN THAT I CARRIED IN MY HEART WAS BECOMING TOO MUCH, FOR ME AND I TRIED EVERY WAY THAT I COULD NOT TO FEEL, BUT I STILL DID.
THERE IS NO WAY TO ESCAPE THAT PAIN IN UR HEART OR THE LUMP THAT STAYS IN UR THROAT. SO, I HAD TO EVENTUALLY, GIVE IT TO THE LORD, FOR GOD TAKES THAT PAIN AWAY FROM US AND HELPS US MAKE IT THROUGH ALL OF THE HARD TIMES. 
IT WAS A BURDEN THAT WAS WEIGHING ME DOWN...AND ALL I COULD THINK OF...WAS HIS WELL-BEING...HIS HAPPINESS. GOD DOES SAVE US, FROM OURSELVES WORRYING TOO MUCH OR TRYING TO FIX THINGS THAT CAN'T BE FIXED...IT SEEMS. HE HELPED ME FROM ALL OF THAT. HE TOOK IT FROM ME, BUT OF COURSE, I STILL HAVE TO FIGHT EVERYDAY TO GIVE IT TO THE LORD, BUT I DO AND HE IS ALWAYS THERE. I DO DEPEND ON THE LORD AND HE ALWAYS COMFORTS ME.:D

I GOT SICK FROM WORRYING TOO MUCH. YEAH, I DID. STRESS CAN KILL U. I KNOW THAT NOW. IT JUST WAS TOO MUCH FOR ME TO CARRY...IN MY HEART...IT WAS TOO HEAVY.:P 
WHAT AN ORDEAL TO GO THROUGH AND ONLY BECAUSE I WAS TRYING TO PROTECT MY SON. THE JUSTICE SYSTEM IS UNFAIR, BUT GOD HAS A REASON FOR EVERYTHNG...I DO WONDER SOMETIMES...WHY???? BUT I GUESS..HE DOES HAVE A REASON. FOR EVERYTHING THAT IS DONE. I JUST HAVE TO KEEP THE FAITH AND BELIEVE THAT ALL IS GOING TO WORK OUT...SOMEDAY.:)

WHAT HURTS ME MOST...IS ALL THE TIME THAT I LOST WITH HIM...BEING AWAY FROM EACH OTHER...AND WE HAVE FOR SO LONG. HE DIDN'T GET THE CHANCE TO KNOW ME.:((( HE DIDN'T GET A CHANCE TO KNOW ME, AT ALL.:P
ON TOP OF EVERYTHING...HE WAS TOLD BAD THINGS @ ME. I KNOW, BECAUSE HE TOLD ME. ONE DAY, HE TOLD ME OF SOME OF THE THINGS THAT HAD BEEN SAID AND IT HURT ME TO THE CORE. WHAT IS SO BAD...IS JUST TO KNOW, THAT SOMEONE COULD TELL A CHILD SUCH THINGS @ THEIR MOM AND HURT THEM, INTENTIONALLY. IT MAKES ME SEE JUST WHAT ALL HE WENT THROUGH AND HOW UNFAIR HE HAD IT...WE HAD IT, TOGETHER, FOR HURT FOR HIM, SO MUCH! 
THERE WAS NO REASON TO TEAR ME DOWN, TO HIM. I NEVER WOULD DO THAT TO SOMEONE...OR TEAR ANYONE ELSE DOWN. I HAVE MADE MISTAKES, BUT WHO HASN'T AND THAT DIDN'T AFFECT ME BEING A MOTHER. BEING A MOM IS THE MOST IMPORTANT THING THAT I AM!!! IT IS WHO I AM.:D

I PRAY THAT HE CAN SEE SOMEDAY JUST HOW MUCH THAT I LOVE HIM. AFTER, HE HAS HIS OWN...HE WILL SEE JUST HOW MUCH LOVE IS THERE.
I KNOW, WHEN A CHILD IS RAISED A CERTAIN WAY AND TO HEAR THINGS THAT THEY DON'T UNDERSTAND @ ONE OF THEIR PARENTS....IT CAN BE CONFUSING AND THEY, DON'T KNOW WHO IS TELLING THEM THE TRUTH. WHEN, THEY ARE INTENTIONALLY SEPERATED FROM ONE OF THEIR PARENTS...THEY FORM AN OPINION, ON THE SITUATION...BY WHAT HE IS INSTRUCTED TO DO OR HAS LEARNED TO DO.
IT IS MUCH HARDER FOR THEM, BECAUSE THEY DON'T HAVE ALL THE FACTS....AND THEN, THEY DON'T GET TO SPEND TIME WITH THAT PARENT, TO FULLY UNDERSTAND OR KNOW, WHAT HAS ACTUALLY HAPPENED BEHIND THE SCENES. THEY HAVE BEEN DEALING WITH STRESSES OF THEIR OWN AND CAN'T SEE WHAT HAS ACTUALLY, WENT DOWN.
IT IS SO HARD ON A PARENT TO SEE THEIR CHILD ABUSED, MISTREATED...AND ABANDONED...YES, I SAID ABANDONED. MY SON, ACTUALLY TOLD ME THAT HE WASA LEFT SOMEWHERE ONE TIME AND THAT THEY JUST LEFT HIM THERE, FOR A COUPLE OF HOURS...HE SAID. I CAN SIT AND IMAGINE SOMEONE DOING THAT TO MY SON...AND IT MAKES MY BLOOD BOIL. I THANK THE LORD THAT HE WAS SAFE AND MADE IT THROUGH THAT HARD ORDEAL, BUT I CAN'T PHATHOM HOW SOMEONE COULD DO THAT TO A CHILD OF ONLY 7.
I ACTUALLY, HAVE A LETTER THAT MY SON GAVE ME, AT ONE POINT...AND HAVE KEPT IT. IT IS SO HARD TO READ, BUT I AM THINKING @ TAKING A PIC OF IT AND ADDING IT TO THIS POST, BUT WANT TO ASK HIM FIRST, B4 I DO. IT SAYS SO MANY THINGS THAT HE WENT THROUGH AND I WANTED SO BAD TO FIND SOME WAY OF GETTING HIM BACK HOME, BUT THAT NEVER DID GET TO HAPPEN...AND I AM SORRY, FROM THE BOTTOM OF MY HEART...IF HE FEELS THAT I DIDN'T DO  ALL THAT I COULD, BUT I DID TRY. I CALLED SENTATORS, REPRESSENTATIVES....I DID ALL THAT I COULD, UNTIL I GOT STRUCK DOWN...WITH ALL OF THIS PAIN, THENM I COULDN'T DO ANYTHING...I CAN BARELY TAKE CARE OF MYSELF RIGHT NOW.:P
...BUT I CAN SAY THAT MY CONSCIENCE IS CLEAR, FOR I TRIED....DID ALL I COULD, BUT IT WASN'T GOOD ENOUGH TO GET HIM HOME. I DID THE BEST THAT I COULD.

I WAS A GOOD MOM...ALWAYS HAVE BEEN AND WILL CONTINUE TO BE A GOOD MOM. MY KIDS COME FIRST TO ME AND THAT IS THE WAY THAT IT SHOULD BE!!...I JUST WISH THAT HE COULD UNDERSTAND THAT I HAVE ALWAYS BEEN THERE...AND STILL AM, BUT DUE TO WHAT MY BODY IS PUTTING ME THROUGH...IT MAKES IT EXTRA HARD. TO JUST MAKE IT THROUGH A DAY...AND I PRAY ONLY FOR HIS SAFETY AND WELL-BEING, OUT IN THIS MAD CRAZY WORLD...THAT IS REALLY THE DEVILS PLAYHOUSE.



WHEN, U ADD ALL OF THIS UP...U GET PAIN AND A LOT OF IT..BUT WHEN U ADD THE HEARTACHE TO THE MIX...IT JUST INTENSIFIES IT. THIS IS JUST SOME OF MY PROBLEMS , BUT WE ALL HAVE OUR "OWN CROSS" TO BEAR AND THAT IS LIFE.

I ALSO, HAVE BEEN DIAGNOSED WITH ADDISON'S DISEASE, WHICH IS A BONUS PROBLEM THAT HAS BEEN UTTER "H" ON TOP OF ALL THE OTHERS AND IT CAN BE DEADLY...IF, NOT TREATED PROPERLY, BUT I AM STILL HERE...FIGHTING TO SEE IT TO THE FINISH...HOPING THAT ONE DAY, I WILL BE ME AGAIN...AND ABLE TO DO BE THE MOM THAT I ONCE WAS.
I SURE HOPE THAT IT WILL HURRY UP...I AM MISSING SOOOO MUCH TIME...IN MY KIDS LIVES...AND WITH MY FAMILY THAT REALLY HURTS. YEP, MY <3 IS ON THEM...AND THEIR LIVES...AND THEY JUST DON'T UNDERSTAND WHY I AM IN PAIN...ME EITHER, FOR THAT MATTER.
I JUST PRAY THAT THEY HOLD ON...FOR ME AND GIVE ME A CHANCE TO SHOW JUST HOW MUCH I LOVE THEM.:))))))))))
I WILL BE ABLE TO GET BACK ON MY FEET AGAIN, ONE DAY..."LORD'S WILLING".
I AM TRYING EVER SO HARD TO GET THERE...AND I AM SURE THAT I WILL NEED SURGERY EVENTUALLY, ON MY BACK OR NECK FOR THAT MATTER, BUT I PRAY THAT I CAN MAKE IT, WITHOUT IT.
I JUST WANT TO GET ON WITH MY LIFE...WITH MY FAMILY.
I AM IN PAIN AND CAN'T WALK TOO GOOD, BUT UNTIL THEN, THE LORD IS WATCHING OVER ME...AND I THANK HIM FOR BEING THERE...AWAYS, FROM THE BOTTOM OF MY HEART. I KNOW HE LOVES ME...AND WILL ALWAYS BE THERE FOR ME, ANYTIME.
PEACE TO ALL...AND MAY GOD BLESS U.:))<3 K

"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