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*

You have to give it time. After my surgery in 1998 at the age of 43, I kept running back and forth to the neurologist and neurosurgeon believing my shunt was blocked. It wasn't. As it is now, I'm scheduled for another CT scan tommorrow to check to see if the pressure in my head is getting worse. After my surgery, I was able to return to work for about two years, before the headaches and seizures forced me into retirement. I can tell you that I have always had the headaches, but I manage them with simple over-the-counter acetaminophen (Tylenol). I also take seizure meds. I don't pretend that I'm getting better, but I do the best with what I have. I still live independently, although doctors made me give up my driver's licence. But I get a disability pension from the government and my former place of employment (I was a reporter and editor at newspapers for 25 years). Recently, I had some of those stomach pains you describe, but they seemed to have faded recently too. I think you just have to see your way into managing the pain you have the best way you can. I found the narcotic medications my doctor once gave me did me more harm than good. I'm afraid headaches are a fact of life with this, you just have to find a way to manage them. I don't know much about the belly pains. I just started having them and they come and go. I found the hospitals and the doctors really can't do much now. They just try and change up medications if the seizures or pain get too bad. I also find if I do too much or worry too much, my problems are worse, so just take it one step at a time and accept what you can do and can't do. You're not crazy, believe me. You jsut have hydrocephalus. Jeff, Kirkland Lake, Ont. Canada

Thankyou soo much for writing me back YES I too go see my NS on Thursday for a checkup...I hope all goes well I am sorry that you have to go threw another surgery...That REALLY sucks I do still have the bit of headaches but I had NEVER had a seizer...nor do I EVER want to know what thats like or have one! Will I ever get seizers??? I do know when I go into the hospital they do put the band on me of a fall risk and take the precautions of me getting seizers but I never knew why...anyways I am learning to deal with this all...It still just blows my mind that I have these problems. I am also trying for disability for my eye sight problem -I too cannot drive yet because of my change of sight. I go tomorrow for memory tests but I think my memory is finally back ... For now it seems like almost IMPOSSIBLE for me to get the financial help I need with ALL that SS/ MEDICADE/ DISIBILITY ETC. But I live in USA & we DO NOT HAVE FREE HEALTH CARE I just dont understand with ALL these different pains how can we work through all this? I guess we are all different and all got shunts for different reasons. Some of us are worse off than others??? Anyways thanks again for writing-It REALLY makes me feel better knowing what other people who have shunts think of my story- Even if its "hey lady get a freekin grip" I NEED to hear those things Well I hope ALL goes VERY well with you-GOODLUCK and let me know what happens-GODBLESS & have a GREAT day!

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.......

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.

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

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. =)

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.

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......

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.