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03-08-2009, 12:57 PM | #1 | ||
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I had a VP shunt placed back in October of 2008, I have since the surgery had short term memory loss, now out of the blue the actual shunt itself is hurting.... it starts out as a "throbbing" then remains... I have experienced the "throbbing" before an thought nothing of it... but earlier yesterday morning I nearly fell from being dizzy an light headed... like I had gotten up to fast, but that was not the case... this was differant. Also, its like the pain is ONLY where the actual shunt itself is, its not a severe pain more annoying than anything...
I went to the ER last night mainly because I was scared... this is all new to me... Anyway, to make a long story short the dr was very rude an walked out of the room as I was in mid sentence an then went an hid in a little room down the hall from my room... he ordered a CT Scan but like my primary dr told me, results are only as good as the person trying to read them.... so I am goin to go an get a copy of CT Scan that was done last night an go see a neurologist. ... The second time the dr (what a joke!) came in my room was to give me a Rx for Fioricet and papers on "What is a headache" I was beyond mad! It was because of a headache they even did my first CT Scan that showed I have hydrocephalus to begin with.... Either way, the shunt still hurts... my short term memory still sucks, still get light headed for time to time an just want to know if anyone else has had this an if so, how was it treated? I just know this isn't normal I guess I feel that I have had the shunt long enough to know now the differance between what is an is not normal for me.... ps: I know the abdomen pain you are talking about... mine comes an goes, once it got so bad I had to sit down in the middle of a store because I couldn't walk it hurt so bad... and my neurosurgeon had told me that it was the tube moving around not to worry.... yeah... I still get headaches, not as bad as before I was "shunted" but have noticed I have more limitations than expected... I am 27 an feel like a prisoner... sorry its not more of a positive message....... |
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04-19-2009, 05:17 PM | #2 | ||
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I was shocked when I found this website, and all of the people who prove I am not crazy!! I was diagnosed with PseudoTumor Cerebri, and had an LP Shunt placed July 2008. My nsg was all like "We put it in, and you will be all better for at least 5 years." HAH!! First off, 2 weeks post op I noticed swelling around the abdominal incision. I called nsg, went in, and he checks and says "I don't feel a thing". Next day, it felt like I had a basketball in my stomach. Went back to nsg, and he says "I might feel a little something, but nothing major". He took out every other staple, and it was on!! It was oozing a lot. He said "CSF, Hmmmmm. It will ease up." Went back the next day, because it was really painful and still swollen, and leaking to beat the band. That was the first revision. The nurse in the OR said that it had showered the nsg and the room . There was 2 liters of CSF, at least. 4 days later, I was changing the dressing, and when I removed it, CSF shot from my abdominal incision straight out about 12 inches . Revision # 2. After that, I had the most severe abdominal/perirectal pain. It would double me over, and I found if I laid on my right side it got better. Nsg had no idea why. Never heard of it before. I was calling out sick a lot. Finally, my OB Dr did a Pelviscopy. She said the shunt was laying on a nerve. She moved it a little, called the nsg to come have a look, and finished my surgery. The pain occurred less often. Mainly if I had to have a BM, then it would ease up. It has slowly but surely eased out of my life. But, by then I had Xrays, CT Scans, Colonoscopy, and a multitude of tests. It is frustrating when you KNOW something isn't right, and you walk away more often than not feeling like an idiot. Good luck.
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04-20-2009, 05:10 PM | #3 | ||
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WOW!!! Thats some CRAZY stuff! Yeah having the stomach pain is HORRIBLE and whats also worst about it , is it will go away then like months later it will come back again...but I hear ya- about the BM thing and ALL that. I went to my OBGYN as well and she said it was just dangiling all about too... I do NOT understand why NSG ALL seem to say this but according to ALL these people who have the shunt ALL have the same problems-go figure All I do now is watch what I lift and so far so good Hope all is well Have a great day! & good luck to you
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04-21-2009, 05:45 PM | #4 | ||
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Junior Member
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i had abdominal pain on the night of migration surgery from the abdomen,
i had terrible pain for months, every day on and off. It eased slightly after about 4 months, but still was very painful when it hit. After 6 months, i had the tube converted to a VA shunt instead of VP, so now the tube leads to my heart instead. since the operation i havent had ANY abdominal discomfort, so its worth the conversion if your willing to risk the chances of infection from operation. good luck to all you lot suffering from abdominal pain. =) |
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05-11-2009, 10:35 AM | #5 | ||
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I had adominal pain most of my life, and nobody could tell me why until after having multiple surgeries(for endometriosis) but then I learned that the pain was actually coming from where the shunt tubing was placed. Since then my surgeon in Charlotte, Dr.Mclanahan agreed to put in a VA shunt, and since then I have no adominal pain whatsover.Its been three months.
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09-06-2010, 12:10 PM | #6 | ||
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I read your story when googling pain in shunt.I quickly joined the site because I couldnt believe what I was reading.My story is almost identical to yours.I was 29 when I had my first shunt put in tho.
Prior to the last week of April I was on top of the world.I had finally made it in my career(hairstylist) was newlywed (2weeks) and so fulll of life. I was at work and dropped a mirror because my hand just let go of it when I was showing a customer her hair.The next day I had the day off work.My husband and I had plans to have dinner with friends and I was feeling horrible.My head felt like somone was drilling into it.My body ws jerking and having spasms.We went out to dinner anyway and I was just irritated and trying to keep my best face on.We went to the mall after and my hands and feet were pouring out water.I was disorientated and walked into glass door I coulnt figure out why. After that we went and got a coffee and the pain in my arms and legs was geting worse.My right leg was actually moving up and down.The next day we though somethings really wrong.I was so sick we thought maybe I was pregnant.Not that we would know what thats like but I just knew something was really wrong.We went to ER and well my life has neer been the same. I was told the shunt would make everything better and I would fully recover in no time.......Ya right. I was very determined and went back to work shaved head and all 3 weeeks after surgery.I only lasted a couple weeks and have been bouncing off and on disablilty ever since...Recently had to apply for SS. Since my surgery I have had a ton of medical problems.I still get horrible headaches daily.I have pain attacks in my arms and legs back and hip.They have diagnosed me with fibromyalgia and Hydrocephalus.At first they said I had pseudotumor cerebri.Now I get mixed and confusing reports from doctor they are all over the place . They say its fibromyalgia but that same pain is part of the reason we went to ER in the first place.I dont know what to do anymore.The doctors tell me they dont know what caused hydro or anything else.The doctors also say my case is so rare....After reading your post I guess its not so rare. Im really concerned right now thats what brought me here is that my neck near my tubing is killing me.I have tried pain medication and muscle relaxers ,ice and heat.Nothing is helkping...... Quote:
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09-26-2010, 08:09 PM | #7 | ||
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I do not see postings from anyone other than those that have shunts themselves so I hope that I do not offend anyone by being the one to share my son's problems and ask for advice. My son had spinal meningitis at 5 days old. They told me he would not make it through the night, his spinal fluid looked like cloudy water. But he did make it, through that and the next year that was spent in and out of Children's Hospital (mostly in). He was shunted, revised, revised, infected, shunted externally, and revised again. Then we went four blessed years. Another revision, and seven more years. This revision did not go as well at age 12. He was revised, and the shunt failed within six hours. The doctors did not want to believe it, refused to do another CT until I became hysterical. They did do CT and took him immediately to surgery. At that point he was so sick, he also suffered a collapsed lung. He was brought out on a ventilator for 3 days. When we were released from the hospital that time I prayed, and prayed, that it would be the last. Now 18 years later at age 30 the cycle has started again. He began getting headaches in late June that medication was not stopping. In the second week of July we took him to the local hospital. His vision was so bad that he was needing help to walk by his wife. They did CT and said there was nothing wrong except for a new diagnosis of migraines. A week later his wife called me at 3:30 am to tell me he was projectile vomiting. I met them at the same hospital and the doctor did not seem concerned. They did another CT and while waiting for it to be read, (two hours plus) the doctor never came back. At 6:00 a.m they came and told us they wanted to fly him out immediately to hospital 60 miles away. When I asked why the doctor had not been concerned before he told me that with all the shunts he had he thought one of them had to be working. He never read the report that he had only one functioning shunt, the rest were catheters left from previous surgeries that could not be removed due to bleeding risk. I do not know how this disease can be so dismissed . He had surgery that day and was crawling on his hands and knees to the bathroom from abdominal pain four days later. Back in ER 5 days after discharge,actually questioned rudely by ER doctor as to why we are there. Who told us to come? Best yet, told him to quit taking his pain meds, that was probably the problem. Back home, stomach pains and then the headaches again. Back to clinic three more times. CT fine, everything's ok. Getting sicker/sicker. I take him back to hospital and now we just had surgery again. SLIT VENTRICLE SYNDROME. How are we supposed to know what's wrong when the people that are supposed to know don't. No matter how old he is, he is my son, and any knowledge or support I can learn from this website is a true blessing. Thank you for posting your medical issues, sharing knowledge makes us stronger and more prepared, and a lot less alone.
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04-01-2013, 02:37 PM | #8 | ||
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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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04-01-2013, 05:57 PM | #9 | ||
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Junior Member
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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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