Quote:
Originally Posted by DPD235
I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts I’ve read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DR’s later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you ‘all is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe I’m at a standstill! Thanks in Advance!!
|
I KNOW SOME OF THESE ARE OLER POST. BUT I WAS CURIOUS HOW THINGS WERE GOING FOR YOU NOW? EVERYONE IS DIFFRENT, BUT I WAS DIAGNOSED WITH ARNOLD CHAIRI MALFORMATION AT 15 YEARS OLD AND THEY DID THE DECOMPRESSION SURGERY WHEN I TURNED 17 IN 2009. AND A MONTH AFTER THAT SURGERY I WAS SUPPOSED TO BE ABLE TO START MY SENIOR YEAR OF HIGH SCHOOL BUT I WAS SO SICK AND MY HEAD WAS KILLING ME, BUT THEY KEPT TELLING ME IT WAS A MIGRAINE AND WOULD SEND ME HOME. UNTIL I THEN STARTED HAVING SEZIURES, PASSING OUT, THROWING UP EVEN WHEN THEIR WAS NOTHING LEFT TO COME UP. THEN COME TO FIND OUT, I HAD FLUID ON MY BRAIN. THEY SAID I HAD HYDROCEPHALUS. SO LIKE ALOT OF THE STORIES ON HERE, AFTER A WEEK IN ICU AND 3 SPINAL TAPS IN 3 DAYS THEY THEN PUT A VP SHUNT IN. NEEDLESS TO SAY I ENDED UP HOMESCHOOLING MY WHOLE SENIOR YEAR WHICH WAS A BUMMER. AND FROM THE 1ST WEEK AFTER HE PUT IN THE SHUNT I TOLD THE DOCTOR A YEAR STRAIGHT THAT I WAS IN CONSTANT PAIN WHERE THE SHUNT IS AT IN MY HEAD. HE SAID IT TAKES TIME TO HEAL. A COUPLE YEARS LATER AND TOO MANY HOSPITALIZATIONS, CTs, MRIs, PAIN MEDICINE (THEN REHAB) :/ THEN FINALLY MEDICATION FREE SO THE DOCTOR WOULD STOP TELLING ME I WAS HAVING MIGRAINES OR REBOUND HEADACHES FROM THE PAIN MEDICATION. AND HE STILL WASNT CONVINCED THEIR WAS ANYTHING WRONG AND HIS EXACT WORDS THAT I STILL REMEMBER LIKE IT WAS YESTERDAY WERE " I SHOULDNT BE IN PAIN, HE PUTS SHUNTS IN BABIES ALL THE TIME AND THEY DONT HAVE CONSTANT PAIN AND ARE FINE" AND THEN I LOST MY PARENTS INSURANCE WHEN I TURNED 21. AGAIN MANY HOSPITAL VISITS, CTS, MRIs, LATER, IM NOW 31 AND HAVE JUST AS MUCH PAIN AS I DID THE WEEK HE PUT THE SHUNT IN. AND TO BE SEEING SO MANY OTHERS IN SIMILAR SITUTIONS, AND THEIR BEING ALL TYPES OF STUDIES ON THE FACT THAT A SHUNT CAN CAUSE PAIN THAT I NEVER SEEN YEARS AGO. SO NOW IM 31 AND STILL NO MEDICAL INSURANCE BC I CANT KEEP A JOB MORE THEN A COUPLE OF MONTHS WITHOUT MISSING A BUNCH OF DAYS DUE TO BEING SICK, THEN FIRED. DISABILITY DENIED ME 8 YEARS AGO AND I JUST FILED AGAIN 3 MONTHS AGO. BECAUSE IN THE PAST 5 MONTHS I STARTED GETTING THE PAIN IN MY STOMACH THAT I SEE SOME OF YALL MENTIONING. IT COMES OUT OF NOWHERE AND FEELS LIKE IM BEING STABBED. AND STILL HAVE THE UNBAREABLE PAIN IN MY HEAD WHERE THE SHUNT IS. ALONG WITH A HOLE LIST OF OTHER SYMPTOMS. SORRY TO DEPRESS ANYONE WITH THE NEGATIVENESS. JUST HOPING SOMEONE MAY HAVE ADVICE. MY ADVICE TO ANYONE JUST HAVING THE SURGERY AND IN PAIN, RESEARCH ALL THIS BC THE STUDIES ARE THEIR NOW WHERE THEY WERNT 10 YEARS AGO, OR AT LEAST I WASNT SMART ENOUGH TO RESEARCH IT, AND MAKE MY DOCTOR TRY MOVING IT, OR ADDING A VALVE OR ANYTHING BC NOW IM STUCK WITH A OBJECT IN MY HEAD THAT CAUSES SO MUCH PAIN, (HEAD, NECK, BACK, AND SHOULDERS) DIZZINESS, MEMORY PROBLEMS, BALANCE ISSUES THAT HAVE CAUSED 2 MAJOR FALLS THAT
PUT ME IN THE HOSPITAL TWICE IN JUST THE PAST COUPLE YEARS,I CANT TOLERATE THE HEAT, MY FINGERS AND HANGS SWELL,FREQUENT NAUSEA, AND THATS JUST THE ONES I CAN REMEMBER RIGHT THIS SECOND. AND IM NOT DOCTOR, BUT I BELIEVE THAT THE SHUNT OVERDRAINS SOMETIMES IS THE REASON FOR ALOT OF THE SYMPTOMS. AND WITH NO INSURANCE AND NO NUROSURGON BC MINE WAS A PEDIATRIC NUROSURGON AND I HAVENT BEEN ABLE TO SEE ANOTHER ONE THAT WOULD GO OVER MINES HEAD AND CHANGE THE VALVE ALTHOUGH THAT WAS THEIR RECOMMENDATION. BUT THAT WAS ABOUT 5 YEARS AGO, SO IM SO TIRED OF HURTING, AND TIRED OF THINKING I WAS CRAZY FOR YEARS BC MY DOCTOR SAID "IT COULDNT AND SHOULDNT HURT". JUST GIVE IT TIME TO HEAL." THANKS IN ADVANCE FOR ANY ADVICE.
