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.

Hi!!! I am soooo glad I decided to research my own problem before I had my gaall bladder taken out( they thought that must be where my pain was coming from). I had a VP shunt placed in January of '09 and woke up from surgery with horrible vaginal,rectal and abdominal pain.It has never gone away!! My head is doing great...but I seemed to have traded one problem for another!! I have been sick for 16 years with Pseudo Tumor and have been doin meds and spinal taps all this time. I finally moved to another state and changed neurologists...they were shocked at the amount of diamox I had been on for so many years and immediately scheduled my surgery. I have known something isn't right w my tummy since surgery but wasn't gettin anywhere. I stumbled on to this website when I decided to take matters into my own hands. Thank God!!! I called my doc and they logged on...case solved!!! They are going to shorten the tube and check it all out. I hope I can wait 3 wks...it seems to be getting worse daily and now I'm having blood in my urine and stool. I also have had a horrible time with my memory and often lose my train of thought when speaking..does this happen to anyone?? I have also bbeen experiencing neck pain and pain into my face that feels like nerve pain...it's awful!!!! Thanks everyone!!! We are all in this together!!!!

Hi, i know ive posted here before, but was just wondering if youve had an ultrasound done.
reason i say, is that the only thing that made my NS want to convert my tubing was the fact that there was evidence of pocketing fluid in my abdomen.
This problem caused one type of pain, the discomfort caused a different sort of pain.
But having my VP shunt converted to a VA shunt relieved all the pain from there =)