TARLOV CYST/TETHERED CORD

By BARBARA, United States, December 26, 2014

I WAS BORN WITH TETHERED CORD AND WAS NEVER DIAGNOSED, TARLOV CYST IS PRESENT OR FOLLOWERS THIS DIEASE FOR SOME REASON. MINE STARTED WITH BOWEL PROBLEM AS A CHILD, DEALF IN MY RIGHT EAR THAT NO REASON COULD BE FOUND. OVER THE YRS OF MY LIFE THE PAIN WOULD STOP ME BUT I WOULD TRY TO JUST KEEP GOING. WHEN IT FINALLY DID GET ME, IT STARTED AS A SHOCKING IN MY LEFT ARM, SWELLED UP AND ACCROSS MY CHEST. I KNEW IT WASNT A HEART ATTACK. THEN THE PAIN WENT TO MY LEFT KNEE AND POOLED THERE AS IF IT WAS FILLED WITH FLUID. I HAD TO ARGUE WITH DRS THAT THAT WAS AS FAR AS IT WENT BUT THEY WANTED ME TO SAY IT WENT ALL THE WAY TO MY FEET TO MAKE SENCE TO THEM. I COULDNT TELL THEM IT DID WHAT IT WASNT DOING AT THAT TIME. LATER DOWN THE YRS IT HAS GONE ALL THE WAY TO MY TOES. WHEN THE PAIN JUMPED FROM MY LEFT SIDE TO INCLUDE MY RIGHT IN THE SAME LOCATIONS, FROM MY BREAST AREA TO MY KNEES, THEN THE SORES STARTED BREAKING OUT. CAUSE OF MY BOWEL PROBLEMS EA SPECIALIST WANTED TO BLAME ALL OF IT ON THAT. I WAS AND HAVE BEEN TOLD THAT I HAD A VERY UNUSUAL BODY ALL MY LIFE AND THAT IS THE NICEST WAY THAT IT WAS SAID. TODAY THE SHOCKING, SITTING ON A 4X4 HAS EXTENDED ALL THE WAY FROM THE STEM OF MY NECK ALL THE WAY TO MY TOES ON BOTH SIDES OF MY BODY. THE SORES ALWAYS LEAVE SCARES. IT IS ALSO CONNECTED WITH SPINA BIFIDA. IV BEEN IN PAIN ALL MY LIFE, IN AND OUT OF SOME VERY FAMOUS HOSPITALS IN USA. IN MY LATE 40'S IT KNOCKED ME OFF MY FEET. ITS 2014 ALMOST 2015 AND I STILL RUN INTO SPECIALIST THAT REFUSE TO ADMIT OR RESEARCH THE DISABLING EFFECT THAT THIS DIEASE HAS ON A PERSON. THIS IS MY 9 YR OF SEVER PAIN, 4TH YR OF BEING PERMANENT DISABLED. ALSO 4TH YR OF 24/7 NON STOP SHOCKING PAIN, LIKE A ELECTRIC WIRES SPIKING. BECAUSE OF THE NON STOPING PAIN, MY BODY NOW DOESNT KNOW WHAT IS GOOD FROM BAD, THIS HAS CAUSED A DIEASE CALLED PLEVA. IM STUCK IN BED AT LEAST 80% OF MY LIFE. IV SPOKEN TO THOUSANDS OF PEOPLE ALL OVER THE WORLD THAT IS BEGGING DRS TO PLEASE TRY TO UNDERSTAND THIS DIEASE. IM A MEMBER OF NORD. AND I HAVE RESEARCHED THESE DIEASES SINCE 1999. I HAD A TETHERED CORD RELEASE BUT IT RETHERED WITH OUT THE HELP FROM THE SURGEON CAUSE HE DIDNT BELIEVE THAT IT COULD DO THAT, IT SEEMED TO BE A INSULT ON HIM IF MY DIEASE DIDNT GO AS PLANNED. I NOW CANT WALK, SIT, STAND, BEND FOR ONLY MOMENTS. I TRY TO KEEP GOING TO KEEP MY MUSCLES FROM WILTING BUT IT IS GETTING HARDER. AS THE CYST GETS LARGER AND PUSHES AGAINST OTHER NERVES, BONE, ORGANS IT CAUSES ALL SORTS OF PROBLEMS. IV LEARNED AT LEAST 80% OF PEOPLE IN THE WORLD HAVE AT LEAST 1 CYST. AND THEY NEVER KNOW IT. ARENT TOLD IF SEEN WHEN OR IF THEY HAVE A MRI OR CT. THE RADIOLOGIST JUST WONT BRING IT FORWARD AS IMPORTAND. IT IS PASSED OVER. BUT WHEN THE CYST BECOME SYMPTOMATIC, IT IS NOTHING TO BE PASSED OVER. IT BECOMES A WORLD OF PAIN, FLUSTRATION, ANGER AND FEAR. WHEN YOUR TOLD IT IS IN YOUR HEAD AS THE MEDICAL ASSOC. HAS DONE OTHER DIEASES OVER THE YRS, IT MAKES YOU FEEL LIKE YOU ARE NOT SURE OF YOUR SELF AFTER A WHILE, BUT THOSE OF US THAT KNOW OUR BODY KEEP FIGHTING. UNFORTUNATELY WITH OUT HELP SOMETIMES. THE DIEASE HAS CAUSED US FRIENDS, MARRAGES, CHILDREN AND EVEN HAS TAKEN AWAY FROM US OUR FREEDOM TO LEAVE THE HOUSE CAUSE OF THE PAIN. IV WRITTEN A LOT OF LETTERS TO THE MEDICAL BOARDS AND TALK ABOUT THIS WHEN I GET A CHANCE, IV TRIED TO GET HOLD OF SEVERAL TOP TALK SHOWS WITH OUT SUCCESS. IV FAUGHT FOR A WHEELCHAIR FOR THE LAST 5 YRS. NO ONE UNDERSTANDS THE PAIN OF THE CYST ON THE NERVES, I NOW HAVE THE CYST ON BOTH SIDES OF THE CORD ON ALL 3 SECTIONS, CERVICAL, THORATIC, LUMBAR. I HAVE BED SORES BUT ITS GETTING HARD TO TELL THE DIFFERENCE BETWEEN THE PLEVA AND BED SORES. WHEN THE WHEELCHAIR PEOPLE COME, THEY EXPECT YOU TO BE A QUAD, PARA OR BE PARALIZED ALL TOGETHER. WE ARE NEITHER. UNFORTUNATELY OUR NERVES HAVE AND ARE BEING DAMAGED EA DAY, OUR BONES ARE CRUMBLING FROM THE PRESSURES OF THE CYST. ALONG WITH THE TETHERED CORD YOU WILL ALWAYS FIND A FISCULA. MINE GOES ALL THE WAY THRU TO THE INSIDE. IT IS WHERE THE CORD THAT DIDNT GROW THE CORRECT LENGTH IN THE WOME HAS REACHED AND GRABS HOLD OF A SECTION OF THE LOWER BODY AND PULLS IN. IT IS A DIMPLE, SMALL HAIRY SITE, OR THE HOLE IS ACTUALLY OPEN. IV BEEN TO SO MANY DRS, SPECIALIST OVER MY LIFETIME AND HAVE TRIED TO LEARN AS MUCH AS I CAN, AT THIS POINT IN MY LIFE, IT IS GETTING HARDER TO FIGHT. THE PAIN LEVEL HAS REACHED MY HANDS SO ITS HARD TO TYPE, WRITE. MY VOICE GIVES OUT AFTER TALKING FOR A WHILE. MY EARS, EYES ARE BEING ATTACKED BY CYST ON THE NERVES THAT GO TO THEM. IV CONTACTED MY GOVERMENT AND TRIED TO FIND OUT WHY NOTHING HAS BEEN DONE. NORD HAS HAD SESSIONS ON THIS DIEASE, I TRY TO KEEP UP ON ALL THE NEWS IF ANY. I BACK A COUPLE OF YRS AGO WHEN I HAD MORE STRENGTH REACHED UP AS FAR ON THE MEDICAL LADDER AS I COULD AND FOUND OUT THAT IF THE DIEASE ISNT IN A BOOK, THEN ITS NOT COUNTED AS A DIEASE. THE LADY THAT I SPOKE WITH SAVED MY NAME CAUSE SHE CALLED ME BACK WHEN THAT YR WE FINALLY GOT ADULT TETHERED CORD ON THE LIST. I FOUND OUT BY MY RESEARCH THAT MY YOUNGEST DAUGHTER VERY WELL COULD HAVE HAD THESE DIEASES BUT I DIDNT KNOW, BUT SHE HAD A HARD TIME WALKING AS AN INFANT AND RIDING IN A CAR WOULD MAKE HER TAIL BONE AND LEGS HURT. MY UNCLE WHEN I WAS SMALL, I REMEMBER HIM HAVING EXTREME BOWEL PROBLEMS, AS WELL AS I ALSO DO, WITH THE TETHERED CORD OR TARLOV CYST THE BOWELS ARE RESTRICTED AND THE ACUTE PAIN OR NON BOWEL MOVEMENT IS THERE. IV WENT UP TO 3 MO'S WITH OUT A BM AND HAVE GONE TO HOSPITALS MANY TIMES AND HAD TO HAVE ENEMIAS. I HAVE A YOUNG NIECE, I CANT EVEN CONVINCE HER PARENTS THAT SHE IS VERY LIKELY GOING TO GO THRU LIFE WITH THESE PROBLEMS, BUT ITS BAD ENOUGH WHEN YOU CANT GET MEDICAL SOCIETY TO LISTEN TO YOU BUT TO HAVE FAMILY NOT LISTEN CAUSE THEY DONT WANT TO FACE THE FACT, IS UNBEARABLE CAUSE YOU KNOW WHAT THE PAIN IS LIKE AND DONT WANT THEM TO GO THRU THIS. I BELIEVE ALL INFANTS SHOULD BE CKED FOR SPINE PROBLEMS OF ANY KIND. IV HAD SO MANY SPECIALIST TELL ME THAT THERE WAS NO WAY I COULD HAVE TETHERED CORD CAUSE I WAS AN ADULT. COMMON SENCE SAYS IF I HAD IT THEN I HAD IT AS A CHILD AND WASNT FOUND BY DRS BACK THEN, IM STILL GOING TO HAVE IT AS AN ADULT. BUT THATS CALLED CRAZY IV BEEN TOLD. PLEASE, TARLOV CYST IS REAL. DEVESTATING, CRIPLING AND LIFE ENDING. THE DIEASE PLEVA CAUSE OF THE PAIN TURNS INTO LYMPHOMA IF NOT GOTTEN UNDER CONTROL. WITH THE PAIN ALWAYS GETTING WORSE, THEN YOU HAVE THAT TO LOOK FORWARD TO. IM BEGGING WHO EVER READS THIS, TO PLEASE TELL ME HOW TO EDUCATE PEOPLE, I DONT KNOW WHAT I WAS BORN FOR, BUT IF IT WAS TO GET THIS MEDICAL CONDITIONS KNOWN THEN SO BE IT. IF I CANT HELP MY SELF THEN I NEED TO KEEP OTHERS FROM GOING THRU THIS LIFE. I HAVE MY FIRST GRANDCHILD COMING INTO THIS WORLD SOON, IM TERRIFIED THAT HE WILL HAVE THIS CONDITION. THERE IS SO MUCH I COULD WRITE BUT MY FINGERS ARE ALREADY SWOLLEN. PLEASE HELP ME AND ALL THE OTHER PEOPLE CRYING OUT TO GET HELP. JOHN HOPKINS STOPED TRYING TO DO SURGERY CAUSE IT WAS DOING MORE DAMAGE THEN GOOD. BUT THERE IS A FEW DRS THAT STILL DOING WORK BUT WE HAVE TO BE SO CAREFUL, IT HAS BEEN SO PROVEN THAT THEY DO AND WILL COME BACK WORSE. SOME HAVE BEEN LED DOWN THAT ROAD THAT THEY ARE CURED, JUST TO HAVE THE CYST RETURN BIGGER, AND SINCE THE DAMAGE HAS BEEN DONE ALREADY, IT IS SAID IN A FEW MEDICAL JOURNALS THAT IT JUST PICKS UP WHERE IT LEFT OFF. A LADY FROM EASTER SEALS EXPLAINED TO ME WHY I WOULD HAVE A HARD TIME GETTING A WHEELCHAIR, BUT THAT IS AS SHE WOULD GO TO HELP. BUT THAT DID TEACH ME MORE OF THE INS AND OUTS OF THE DIEASE AND PEOPLE THAT I HAD TO DEAL WITH EA DAY. THANK YOU. BC

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