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Old 04-01-2013, 02:37 PM #31
humphreys270 humphreys270 is offline
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OMG i thought i was going crazy! Im not the only one going through this! My neurosurgeon and doctors dont believe that this pain im feeling could possibly be related to the shunt, even though the pain has only started since. I had a VP shunt fitted on January 15th, then within 2 weeks had 2 more shunt revisions because my neurosurg didnt grt it in the right stop. I went home after days later. Left great for about 2 weeks then i started to get this horrible pain in my abdomen! I just delt with it for a few weeks cause there was so no i was going back in to hospital again!!! After afew more days i caved in, i couldnt even walk from my bed to thw toilet! Something is seriously wrong! I went to my gp who orginised a ultrasound, which you guessed it, came back clear! Then i called my neurosurg to see if he had any answers. He was puzzled he said you dont usually get pain in the abdomen after shunt. He did more scans anyway and they were all clear. He admitted me into hospital because he could see how much pain i was in. He orginised key hole surgery to move the tube to try and stop the pain. It worked for about 48hours, then the pain was back. Ever since ive just been dealing with it. Its been about two weeks. Then this morning i woke up feeling like i was havinh a heart attach, literally so my husband has raced me to the emergency room at the hospital. Ive been here all day doing all sorts of tests. They are positive that there is no relation to the shunt and this pain! We all know this is so incorrect! I just wish i never got the shunt in the first place. Its caused so much more pain than what its fixed! I hope i get some answers soon, or ill be asking my neuro surgeon to remove the shunt.
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Old 04-01-2013, 05:57 PM #32
annakkro annakkro is offline
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Have they done a scan/xray since you had the shunt tubing moved in your abdomen? Mine was wrapped around my diaphragm and then they moved it but it MOVED BACK. So I had another laprascopic procedure in which they just shortened it by a lot so that it can't even reach my diaphragm. I lived with the pain for 9 months though until my pain management dr called my neurosurgeon to tell him, "Listen, she didn't have this pain BEFORE the new shunt was put in, therefore the shunt is almost certainly the cause of the pain" And it was. Be persistent.
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Old 04-01-2013, 06:21 PM #33
Lisa14 Lisa14 is offline
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hi glittergirl, My husband just had his shunt put in on Oct 2012, so we r new to this. He also has abdominal pains that come and go, relieved with bm. He has just recently started having absence seizures as well. We see a seizure neurologist April 9th. He has had severe headaches daily that may last 1 hour to all day. When headaches get severe that's when he has his seizures. He also has some short term memory loss that has not gotten any better. We wish You all the luck and are praying for you! congradulations on your engagement!!
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Old 04-01-2013, 09:30 PM #34
shuntboy88 shuntboy88 is offline
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I got a vp shunt couple months ago and I have abdominal pains on and off. Not as bad as yours. I suffer from bad headaches. Do you have any other symptoms from the shunt?
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Old 04-02-2013, 07:42 PM #35
jasontaub23 jasontaub23 is offline
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Thumbs up one of the first on the planet

I am one of the first people on the planet to have a shunt placed, Jan'70. My understanding first of all there are only to ways to find out if a vp shunt is malfunctioning, spinal tap and/or having an opthamologist look at the ventricles in the back of your eyes to see if they are swollen. I have never had abdominal discomfort. I am not a doctor, however I would think there may be scar tissue around the incision or where the tube was placed. I have had a headache five times in my life, brain surgery all five times, the last being 2006, I can tell you that one of the most common ways to know if the shunt is functioning properly is vertigo, dizziness no matter what position your body is in. I am a guinea pig, doctors have to be more reactive than proactive, I was recently diagnosed with epilepsy, when I asked my neurologist if the shunt had anything to do with it, his response was it is possible, you have a foreign body in your head, however without more knowledge of the long term effects of the shunt there is no way of knowing for sure. I AM THE LONG TERM EFFECT, I and the doctors will learn day by day, I try to keep my doctors up to date with any changes in my condition.






Quote:
Originally Posted by glittergirl View Post
Hello everyone
I am new on here and sooooooooo Happy to of found this site. I have had a vpshunt put in on Aug of 2008. it has been about 6 months since I have had this shunt and dont get me wrong , my pressure problem is all gone BUT, I have had soooo many problems since surgery. It took me a long time to recover for I had sooo much pressure in my head that it was the most my Brain Surgen has EVER seen! NO wonder why I was REALLY sick for 4 years- I lost a little bit of my vision ( well its not the same) because of all the pressure on my optic nerve. It's only been 6 months almost 7 and I feel that I am FINALLY getting back to normal, EXCEPT of all the HORRIBLE odd pains I have been having since surgery. It started about 2 months after surgery...I started to get this HORRIBLE MOST HORRIBLE abdominal pain- I have been threw EVERY test MRI/Cat Scan- ETC. and NO ONE found any problem with me or my shunt. So ok...what do I do? It got sooo bad at times I could'nt even walk-everyone said it was NOT from my shunt blah blah blah...I found this site yesterday and read atleast 5 stories of people that has had the SAME abdominal pain and EVERYTHING just like me....OMG Thankyou I'm not crazy-LOL.
So time has gone by and I have had that belly pain happen atleast 6 different times to me and the longest that it lasted was from the 28th of December all the way to the 1st of February (this year) yeah, HORRIBLE then for 4 days I was great then out of the clear blue I felt like I was hit by a bus, and got this most HORRIBLE headache that I have EVER had- and believe me I have had CONSTANT headaches REALLY bad headaches for over 4 years straight! This one was almost the worst of them all! I ended up with some neck pain and a temp of 101. I went into the hospital about 3 days later-(cause you know how you hope it will just go away) well it didnt, it actually got worse I went back into the hospital cause the first time they just thought it was a bad sinus problem- (yeah, I DONT have or EVER had sinus problems)but whatever...and the second time they thought -well didnt know what to think-they called my brain surgen and the next day I was to go get a shunt tap- so I did . It was crystal clear!!! but, I got a phonecall at 8am the next morning saying that my shunt is infected and I needed to go in and talk with the Dr. > OMG I cried for 2 days for I am STILL recovering how can this be? My hair is just starting to grow out etc I thought I was out of the "infection period". ??? Anyways, I was in the hospital for 4 days they did test after test took all kinds of blood /catscan/MRI/ and so on....Here, NOTHING grew in my blood cultures or anything I stopped having a temp and just started to feel great..They said that my spinal fluid must have just had some bacteria on it from the skin or something? And I still had a bit of the neck pain with the headache but NOTHING like I had felt that week. I REALLY felt wonderful! So I got sent home on Valentines Day morning- I actually got cleaned up and went out for the whole day I felt so good! I even got engaged that night but anyways, a whole week went by and all was the best I have EVER felt since ,well, since I'd say I felt in 5 years...Then the beginning of this week I woke up and was like oh no...and the hardcore headache was back with the temp and neck pain! so I went into the hospital again the next day...Of course when it came to my temp it was normal(Thankgod) they took my blood and that was it! they said my blood was fine- my white blood cells a little up (just like before) nothing changed. so NO signs of infection or anything so they sent me home. It has been going on 5 maybe 6 days now and the headache are still here with body aches (Flu feeling) with no temp. I go into my Brain surgens office this Thursday-I am sure he's going to want to do another brain tap Ok...so, I dont understand? I thought I was going to feel better and FINALLY back to normal and live a great healthy life??? Why have I been having sooo many problems since this shunt has been put in me? This is NO WAY to live a life!!! I am sooo mad and sooooo frusterated that i dont know what to do! I am sooo scared to have to go threw "another" surgery and all that. I have read that ALOT of you have had more than one surgery- Why? wasnt this sapossed to make us all better? That is what I was told and there would be NO LIMITATIONS! Has ANY body else out there still having headaches? Is there anyone out there with a good story after getting your shunt? PLEASE write to me for I am soooo worried that my life will be like this forever- Will it? or is it just because my shunt is sooo new??? I cant take it and its REALLY taking a tool on my fiancee and the people around me but especially me...I am getting REALLY depressed- I am only 36 years old and am planning a wedding and a family someday soon but how can you plan anything when you never know how you'll be feeling? aHHH I REALLY NEED PRAYERS! ALL I WANT IS TO FEEL BETTER for longer than a couple of days...PLEASE write and tell me your stories even if they ar bad ones. I am glad to of found people who are going threw what I am and feel what I feel Please send me your stories-I Thankyou*
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Old 12-02-2022, 09:02 AM #36
Cbrook1026 Cbrook1026 is offline
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Originally Posted by DPD235 View Post
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 Iíve read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DRís 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 Ďall 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 Iím 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.
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