03-01-2007, 11:30 AM
Good Afternoon, First off let me start by saying i had shoulder surgery on Dec 6th(almost 3 months ago) the dr cut part of my collar bone-Took out my bursa sac and removed some bone spurs off my ac joint... I started going to PT 10 days after surgery and still go 2 times a week. My problem in that now i have a frozen shoulder (at least thats what they say) and 2 days after my surgery my hand(fingers) swelled up and to this day they are still swollen up.(i have ROM of shoulder 40 outward and 130 up).I have been back to my surgeon and he has sent for for scans to make sure i dont have a blood clot(came back fine) and he took xrays of my hand and wrist and they came back fine also........ I have searched and searched the internet for a reason why my hand is still swollen and i have found nothing! I cant bend my fingers and sometimes my knuckles turn almost black... My surgeon wants to just send me to a pain managment dr and say it is RSD, Im not believing that at all! I have looked and although i do have some of the symptoms i dont have the pain that should be with it...I think its a nerve-circulation problem, I had called my dr 3 days ago and asked for a emg and i have heard nothing back yet.... UHGGG I need help, does anyone have any ideas on what might be going on?
Although my hand is swollen and i cant bend my fingers , you can also see that my whole right arm is bigger then my left.. I have been on anti imflammatorys for over a month and nothing, he put me on anti depressants and still no difference...
Can anyone help me?
03-01-2007, 12:37 PM
Well,i dont have concrete answers as to what's going on.However i do have some suggestions to help with the swelling and circulation problems.
I had frozen shoulder also..so i know what your going through there!!!:(
I'm so very sorry your dealing with all this...
When my fingers would swell after my ulnar nerve surgery.I made sure to keep my hand raised up as much as possible.That helps alot.Also make sure you dont rest your elbow on any hard surfaces.Keep a pillow under your elbow while on the comp and while sleeping.Try not to bend your arm so much.That will cut off the circulation as well.Now these aren't "fixes" just suggestions to help some of your discomfort until you can get a diagnosis.
Please let us know how your doing.
03-01-2007, 01:45 PM
HI Sandy, MY NAME IS LORETTA. I'M SO SORRY TO HEAR OF YOUR SITUATION. IT REMINDS ME OF MYSELF 10 YEARS AGO.. I HAD BENIGN TUMORS TAKEN OUT OF LEFT BREAST AND LYMPH SYSTEM UNDER ARM. SHORTLY AFTER I HAD FROZEN SHOULDER-REAL FROZEN. DR. SENT ME TO REHAB DR. AND SHE SENT ME TO THERAPY. AFTER 100 VERY PAINFUL TREATMENTS, I GOT MOST OF MOTION BACK. I DIDN'T HAVE A LOT OF SYMPTONS OF RSD, BUT MY PRESENT DR. SAID THAT'S WHEN IT STARTED. I DID HAVE PAINFUL STABBING PAINS. THEN WE MOVED FROM OREGON TO ARIZONA, AND THE FROZEN SHOULDER (RSD) MOVED TO THE RIGHT SHOULDER. BACK TO THERAPY.
THEN WHILE WATER SKIING I FELT A PAINFUL PULL IN LEFT HAND. THE FINGERS SWELLED UP IMMEDIATELY AND DISCOLORED, BECAME FROZEN COMPLETLY. LOTS OF PAIN. I WAS DIAGNOSED WITH ARTHRITIS.WRONG
AFTER A YEAR, I FELT SOMETHING WAS VERY WRONG, AND FLEW BACK TO OREGON TO A SPORTS INJURY GROUP AND SAW THE HAND SPECIALIST. HE WALKED IN THE ROOM AND IN 30 SECONDS SAID, I AM PRETTY SURE IT'S RSD.HAD NECULEAR MED TESTS AND CONFIRMED IT. IT'S A VERY HARD DISORDER TO DIAGNOSE AND A LOT OF DRS. HAVE NOT EVEN HEARD OF IT. YOU ARE VERY FORTUNATE TO GET A EARLY DIAGNOSIS. REALLY BECAUSE THE FIRST 6 MONTHS ARE CRUCIAL TO STOP THE PAIN SIGNALS. THE INJURY SITE OR SITE AFTER SURGERY STARTS A PAIN SIGNAL GOING TO THE BRAIN, IT STARTS A PATTERN THAT DOESN'T STOP. WHEN DRS CATCH IT WITHIN THE FIRST 6 MONTHS THEY LIKE TO DO SEVERAL STELLATE GANGILON BLOCK. AN ANTHEOLOGIST DOES THIS PROCEDURE. I WAS WAY TOO LATE FOR HELP. RSD TRAVELS. IT USED TO BE CALLED THE SHOULDER HAND SYNDROME- STARTED AROUND THE CIVIL WAR. I HAD THERAPY HERE IN AZ AND GOT MY FINGERS PARTIALLY BACK, LOSS OF STRENGTH IN HAND. IT LOOKS LIKE A CLAW WHEN I BEND THE FINGERS BECAUSE I CAN'T MAKE A FIST. AFTER IT TRAVELED TO MY RIGHT SHOULDER AND THERAPY IT TRAVELED TO MY RIGHT HAND, THEN TO BOTH FEET, NECK, FULL BODY. I HAVE A WONDERFUL PAIN MANG. DR. I SEE HIM ONCE A MONTH. I'M ON 9 DIFFERENT MEDS. THE REASON RSD SPREADS IS because IT FOLLOWS THE SYMPATHETIC NERVOUS SYSTEM AND THE PARA SYM. NER. SYSTEM. THEY CONTROL THE PARTS OF BODY THAT CONTROL THE INVOLUNTARY ORGANS. THATS WHY IT AFFECTS YOUR BLOOD PRESSURE, BOTH HIGH AND LOW. BODY TEMPERATURE, THAT'S WHY YOUR HANDS AND FEET CAN BEEN EITHER BURNING HOT AND RED, PURPLE, BLACK, MOTTLED OR ICE COLD AND YOU CAN BE COLD OR SWEATING. ALSO CAN AFFECT MAJOR INTERNAL ORGANS. MOST MAJOR CITIES HAVE RSD SUPPORT GROUPS-YOU CAN GO ONLINE AND GET THE PHONE NUMBER AND NAME OF THE DIRECTOR AND TIMES OF MEETINGS. IT'S SO IMPORTANT TO GET A DR. WITH EXPERIENCE IN RSD. IF YOU HAVE RSD, IT'S VERY DIFFICULT TO DIAGNOS THRU TESTS. I HAVE LEARNED The MOST HERE ON LINE AT DIFFERENT SITES LISTENING TO THOSE TO SO LOVINGLY SHARE THEIR EXPERIENCES. IT IS ALSO SO ENCOURAGING TO SPEAK ON LINE TO SHARE YOUR OWN CONCERNS AND FEELINGS. SO MANY OF OUR FRIENDS AND FAMILY REALLY JUST CAN'T UNDERSTAND WHAT IT IS REALLY LIKE TO BE IN SO MUCH PAIN 24/7 THE MEDS MAKE YOU SO TIRED AND SLEEPING CAN BE A PROBLEM. YOU CAN HAVE SPASMS AND ELECTRIC SHOCKS OR JOLTS. MINE HAVE BASICALLY NEARLY STOPPED WITH HEAVY DOSES OF ANTI-SEIZURE DRUG NEUROTIN- THERE IS ANOTHER NEwER ONE ,LYRICA, I'M CONSIDERING GOING ON, BUT MY DR. SAYS IT WORKS BETTER FOR SOME AND NOT FOR OTHERS. BOTH CAUSE WEIGHT GAIN. i am on two anti-depressants, they help with nerve pain and depresson, the depresson is still there. HE HAS A DEGREE IN NEUROLOGY, PHARMACOLOGY, AND IS A PSYCIATRIST FROM CORNELL UNIVERSITY. HE HAS BEEN SO WONDERFUL IN HELPING ME ADJUST. THIS DISORDER AFFECTS THE LIMBIC SYSTEM OF YOUR BRAIN WHICH CAUSES DEPRESSION (AS IF THE DISORDER ISN'T BAD ENOUGH) AND YOUR EMOTIONS, MEMORY SHORT-TERM MEMORY LOSS. IT'S PRETTY BAD. I HAVE BEEN ATHLETIC MY WHOLE LIFE- RUNNING, WATER SKIING, SNOW SKIING, AVID TENNIS PLAYER (MORE LIKE A FANATIC) MY DAUGHTER AND I ATTENDED 10 DAYS OF THE US OPEN EVERY DAY AND NIGHT MATCH. I MISS THOSE THINGS. BUT I SWIM A LOT, IT IS REALLY KEEPING MY TOES FROM CURLING AND MY RIGHT FINGERS FROM LOCKING UP. THE WATER NEEDS TO BE AT LEAST 67-68 DEGREES. ICE IS THE WORST THING FOR US. MY DAUGHTER IS A COURT REPORTER- SHE HAS DONE DESPOSITIONS FOR PATIENTS LIKE YOURSELF WHO HAVE GOTTEN RSD AFTER SURGERY. YOU HAVE ONLY TWO YEARS IN MOST STATES TO FILE AFTER LEARNING OF YOUR DISORDER. THE REASON SOME PEOPLE SUE THE DR. IS FOR THE FAILURE TO INFORM THE PATIENT OF THE POSSIBILITY OF GETTING RSD FROM THE SURGERY. I believe it's 5% IT IS MORE COMMON AFTER SHOULDER SURGERY, HAND SURGERY ULNAR NERVE (ELBOW) CARPULL TUNNEL (WRONG SPELLING) SURGERY, FEET SURGERY OF ANY KIND. I DIDN'T SUE, BUT WISHED I HAD. AGAIN, IT'S IMPORTANT TO GET AN ATTORNEY THAT IS VERY FAMILIAR WITH RSD. MANY ARE FORCED TO GO ON SSI. THEY LOOSE THE ABILITY TO WORK. THERE IS NO CURE FOR RSD. THE BEST SHOT IS IN THE FIRST SIX MONTHS TO GO IN REMISSON. I REALLY CARE- SO I'LL BE LOOKING FOR YOUR NAME HERE ON THE SITE OR YOU CAN E-MAIL ME PATCH2@COX.NET LORETTA-RSD i KNOW YOU ARE SCARED, BUT HOPEFULLY IT'S NOT RSD. BUT IF IT IS, YOU ARE SO FORTUNATE TO GET IT EARLY. CHILDREN AND TEENAGERS EVEN GET IT. I AM 59. My husband is supportive as my daughter and son-in-law. I've just joined this forum. Please let all of us be of support or try to anwer questions. We aren't Drs. but do have a collective experience and caring. loretta
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