Vp shunt= sad
 

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!:)

VP Shunt
 

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.......

Abdominal Pains
 

:eek: 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:D . 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:eek: . 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. :hug:

RE;
 

:eek: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:):hug:

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. =):grouphug:

abdominal pain till recently
 

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 =)

vp shunt pain around the actual shunt and swollen head???
 

Hello I am fastly approaching my two year ann. of my brain surgery for a rathke cleft cyst / vp shunt placement.....I am writing to see if i'm not alone. Sooooo glad to find others with symptoms and pains as I have. My head at the moment is very sore and swollen i mean like baseball size right beside my shunt.....I have had shunt series over a month ago and routine mri and cat's. I am beside myself!!!:mad: I am tired of complaining and having to call the dr. and drive an hour and a half one way to see my neurosurg. the pains in the stomach they tell me i'm just sensative and feeling the tube. The chest pains like stabbing pains are just pains from your body adjusting to the tube as well as the neck pain. I have been having headaches for as long as i can remember. I am about to turn 25 and i feel like i am 100. Has anyone else's head swollen and became very sore especially lifting your eyebrows? Is this normal or should i be concerned? Please help I'm at my wits end with this. Its nice to talk with people who understand and share stories......PLEASE HELP!!!!!

horrible abdominal pain after vp shunt..more surgery
 

I had a vp shunt placed in January of 09 and have had horrible abdominal pain since. I had an x-ray last week of my tummy and it seems the tubing is all the way in my pelvis. Its hard to tell whether it has broken off or just migrated. The pain is unbarable. Im having an exploratory surgery done June 17th and my neurosurgeon said he will most likely change the location of the tubing to the plural cavity..Does anyone know anything about this? Im worried I will have the same pain but near my lung. My memory is awful since surgery. I get embarassed because I forget what Im saying in the middle of a sentence or forget simple things. I hope this goes aay!1 I am thankful that I don't have a splitting headache for the first time in 16 years!!!!

Hi!! I just had my VP shunt placed in Jan of 09. The pain in my abdomen and pelvic area is unbareable. My neurosurgeon is 2 hours away and its a pain to have to keep goin but I have been unrelenting in my battle to make them understand I AM MISERABLE! I have been scheduled to have the tubing moved to the pleural cavity in two wks on June 17th.I hope it works because I feel like Ive traded one pain for another. Keep at your doc about the pain..it is real and it isnt fun!!!

I two know how you feel I had a VP shunt placed in 2004 and have had all the same problems hurting shunt hurting pains in the stomach head ache for days even weeks seizures memory loss concentration problems. Its just something that we all have to deal with having this illness as well as many others illnesses it just something that we have to deal with. I have lost my privlage to drive, lost my job due to all of this on so many medications to control the seizure which make daily life so hard some days but with out them just come more seizures there are some days i just wish that they would take out this stupid shunt then i remember what life was like without it it was so much worse i could not even get out of bed now at least i can on most days with a limited head aches gets worse as time goes on so just hang in there it does get easier as you learn more

I understand...
 

Thanks for writing....I am sorry you too are going threw all this as well. Hope you feel better and it gets better for you! Have a great weekend-

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!!

What dosage of diamox were you on? I have been put on diamox and they are hoping that will bring me back to normal rather than putting in a shunt. I started at 500mg a day, now i'm on 1000mg. I'd like to know what they consider a large dose. I get almost zero information from my neurologist.

Wow!!!
 

Hello there!
I am soo sorry to hear of ALL that you went through...yes having a shunt is REALLY something to get used to. When I first got mine in I too had ALL thoses abdominal symptoms-I had ALL kinds of tests...no one found ANYTHING wrong or out of place with me...So all I could do was to put up with it:(...Then after a while of NOt lifting anything to even a clothes basket...The pain went away...But anytime I would lift something or move something those pains would come back- After about 6 months of that & 6 months of COMPLETELY taking it easy-the abdominal pains ALL went away then the headaches started instead. Since then I have been getting such bad headaches with fevers & chills that it is COMPLETELY Unbareable and usually I end up in the ER. I have been hospitalized for them thinking that I too got meningetis-But it was all negative. Since it has now been over a year that I have had my 1st vpshunt put in- I am still VERY sick:( My fluids in my brain are fixed because of the shunt and all that is now better but, I just am not right. Day by day...I have NO idea if I will get those headaches & fevers again-when it comes its comes just out of the blue and hits me like a truck. then I'm down for usually 6 hours-Then I'm fine-Its quite strange. Within the last 4 days I have called and made that appointment for me to FINALLY get my cyst (of the third ventricle) taken out-My opperation will be Sept 22nd of this year-I am sooooooo scared I just cant handel it-Im scared that My symptoms will not get better and that maybe I will just get worse? I know I have the Best surgen operating on me at the Cleveland Clinic but STILL, I am just flippin out & so VERY scared that It will NOT all work out for me-Maybe its because I have been sick for soooo long? Anyways PLEASE PRAY FOR ME to make it let alone make it out perfectly so I would not then need a shunt put back into me. As for you-I am REALLY sorry for all the problems you have had, I too went blind because of all the pressure on my optic nerve-& thankGod it has came back! I think that you should try to get some disability help... I know, I NEVER wanted to go that way myself but what can you do when we feel the way we feel when it comes to this sickness? I think you will get better because these shunts just take alot of time to get used to and for our bodies to get used to. I still have to take vicodin and all that when I am in pain- But BELIEVE me, after a while you WILL NOT need to constantly be taking those pills.I worried about that too-Becoming a pill head and all- and ThankGod I eventually got off of them and now ONLY take when needed and when I think about it , its NOT very often at all. Maybe I find myself taking the pain pills like once every 3 weeks if that? When ever It get REALLY bad. I guess all i want to say about this is that you & your body WILL get used to all this it just takes some time. I promise:) Please let me know if you are feeling any better? thanks for writing:) have a beautiful day!

Thank God
 

I know that it is horrible to title a thread "Thank God" when so many of us are suffering, but it is such a relief to know that I am not crazy. After living with Pseudotumor Cerebri for 3 years, getting to a point of it leveling out, and now having it come back for the past year+ with a vengeance I finally decided to pursue with a VP shunt. I can't tell you what relief I got in my head and for that I am thankful. I keep those of you who have not got that relief in my prayers. However, since I woke up post op, I have had a horrible sharp pain in my pelvis that does not subside. I called my neurosurgeon whose nurse told me that the small tube could not possibly cause me any pain. I needed to go to my primary care provider (PCP) or to the ER. So I did. My PCP ran test upon test and ruled out everything from ovarian cyst to appendicitis. I finally got my family to help me sit up and google this pain on my own. Here comes the "Thank God." Thank God I found you all who have been so brave and helpful to share what you are going through. I read your stories and felt so much peace among the pain. I read and found that I, like miche27bbd, feel like I traded one pain for another but at the same time I realized that this is a real pain and I am not making it up!!! I had to say thank you all for sharing your stories and for helping me believe in myself and trust my body and what it is telling me.

Wow I thought I was the only one.....
 

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......

Thank you for being there...
 

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.

This Sucks
 

I am glad i found this site. I had vp shunt Dec. 08 and have been in pain since. Abdom pains have gotten easier to deal with but still stop me in my tracks bent over in pain time to time. But my vision and headaches are ruining me and my life. My asshole NS sees me for 10 seconds after a head ct or mri and tells me everythings fine, that i needed to see a psych b/c of anxiety and depressn, i took his advice, maybe i was doing this to myself. i admit it was hard on me mentally, i was a 33 now 35 yr old firefighter married with new child. Well, i am now fine mentally and no longer take any meds for it , which i thought was contributing to headches. However I still have unbearble headaches, vision probs. abdom pain. wtf do i do now? having found this site i see others have the same issues. At least im happy im not crazy.

Don't worry
 

I know it can be tough dealing with a shunt system but it will get better. I have had 11 surgeries before by 5th bday and then i was good for 4 years and had to get it revised at the age of 9 since I outgrew it and have been problem free for over 11 years now. I get headaches and neck pain that bother me from time to time but nothing too serious that the doctors say requires surgery. I am still going on with the same shunt and everything is good. It takes time to heal all wounds and pains but it will get better. I am also glad that I have found this site because I feel as if I can not relate to anyone in my area since im not comfortable talking about it but I hope these words will help you and give you more hope that things will get better. :)

I don’t know where to begin.I am 31 y.o,medical student from Greece.Was born with congenital hydrocephalus and a VP shunt was interted when I was 15days old.Since then I never had any problems as a child.Well,when I was 11 I had my first epileptic seizure and since then I’m on medication.As I said,I am a medical student,I attend med school,study as much as I can,had real difficulty in accepting epilepsy but since med school I realized it’s just another condition and I must learn to accept it and live with it.So far so good.In July of 2008 I left for Prague.Czech Republ.as an exchange student.My academic work there was successful.I passed a respected number of courses but a few months before I finish the program I started having enormous headaches that made me unfunctionable although I had to finish my clerkship…..I visited there 3 neurologists and 1 neurosurgeon and the diagnosis was cervical spine syndrome,I was wearing a special neck collar but didn’t do anything.I kept going but nobody could tell me what was wrong.All these after 3 brain CTs and 1 brain MRI.Till today I am not sure if they saw something in there but couldn’t express it in English…Anyway,I came back home.headaches were worse and I already had began to lose my vision of my right eye and when I went to my eye dr he urgently reffered me to the neurosurgeon beacuse the shunt was dead and ICP and IOP was sky high……..resulting in optic disk edema and loss of vision from the right eye.I had the 1st VP shunt replacement in 10/2009.Next thing I remember was March of 2010,waking up at a bed in neurosurgery department with left hemiparesis and strong vertigo episodes.What happened in between?The 2nd shunt worked about 1month and then started malfunctioning because it was defective.I ended up in ICU in coma for 10days,my heart stopped and they had to revive me and use mechanical respiratory support and then 2months and 20days at the neurosurg.department………I don’t remember anything that had happened,I actually have a gap of 1year,I only remember fragments and now and then I have some flashes of memories.The surgeon used another VP shunt but that one didn’t work at all and now I have a hakim-medos vp shunt.A 3rd one which so far is working.I have a constant buzz in my ears,which they say it’s normal.Obviously I haven’t gone to school since 2009.My right eye was too damaged by the pressure to recover,the left eye is working ok but I can’t read without bright light or if the fonts are too small.As for my psychological status?That’s another issue……..I am depressed,miserable,moody,aggressive to my family as if it;s their fault.
I had to go to rehab to make my leg stronger but still walk with a walking aid.My hand is ok,although a little weakened but nothing serious.I feel……I don’t know how to describe it.As if my whole world was taken from me……One min I was happy traveling,studying and the other I am in my house,stuck,not able to go to school,to go out by myself,to read…At the beginning,after I was discharged and returned home I couldn’t sleep.I had nightmares that I was waking up in a blood bath with the shunt hanging out of my head and I was trying to hold it,a couple of times I’ve dreamed that I am vanishing but still in my house and my family and friends can’t see me……I really expect everything now…….I don’t afraid of dying……..No,since I won’t feel it.I am only afraid that something like that might happen again and lose my memory again and that is really painful.I am so eager to go back to school,continue my life from where I left it.The last 2 days I;ve been trying to read a book but the fonts are so little that make me dizzy and tired and make me doubt whether I am ready to go back to school……
I think I said enough for introduction……….As Dr Irvin Yalom(prof.emer.of psychiatry in Stanford and my favorite writer…..If we acknowledge the universality of our condition things are easier…..a bit….since we are not alone,other people might have the same experience,might dealt with the same issues and could help us overcome our issues)
I was also informed what I have a genetical condition called Arnold-Chiary malformation but not the severe type and agenesia of mesollobium
I apologize if my long text tired you.Feel Free to contact me.it would be nice to feel someone really knows what I'm going through

p.s:I too have neck and abdominal pains but after xrays/ct scans nothing is wrong..........but the pain is still there.

I was taking 4000mg a day before my VP shunt was placed. 2000mg in morning, 2000mg at night.

can some one outgrow the need for a shunt
 

I have a 13 yrs old with shunt and may need a revisions since her MRI is off.I was so glad to read U'r post that one can outgrow the need for shunt.please let me know how to find if a shunt is not needed anymore .like all mom's with kids with shunt it would be a blessing to find out that my kid might not need one or even that it's possible.

God Bless
Bhavana

me too
 

i know what you feel like i have the same problem. i don't know what to do neither and i'm 32yrs old.

WHAT DOESN'T KILL US (SHUNTING) will definitely make us stronger
 

I too had the same probs.. Psuedo tumor... Got my shunt.. Had probs with the first.. (line was kinked) Had another surg... Ended up with a shunt infection that almost killed me.. Had part of my abdominal muscle removed due to infection.. I also have a nice scar where the had to open me up to clean my organs out.. BEFORE my shunt I only had headaches.. Was told i would only be off work for 2 weeks for the operation.. I almost start laughing every time i think about the promises in the beginning by the neuro surgeon... (BTW You can fire your neuro surgeon.. and get another one. I have a wonderful one now) I have spent the last year trying to walk and talk normal.. I finally can speak normally.. I am currently going thru physical therapy to walk normally.. I did the pain pills for two years, and you know what??? I rather deal with the pain and have complete control of my mind.. I am TAKING my life back no matter what.. We have all been delt a really bad hand in life, by ending up with shunts.. But the headaches do get better.. I rather look at all the past surgeries, and pain i went thru as a "hurdle".. I LIVED thru hell, and i am still alive.. I spent to much of my life recovering, and i will learn to live life to the fullest regardless of my shunt.. I wish everyone the best, and i will keep you in my prayers.. The best advice i can give is teach yourself to fight the pain by doing something you love.. I have noticed, when i am in my flower garden i forget the pain.. When i am looking into my grandsons eyes, and enjoying his smile,, I have no pain.. Please everyone live life to the fullest..

Good experience
 

My son was shunted at 6 months old( spina bifida) he still has the same shunt. Only one lengthining revision. He has had none of the problems described. So it is possible to be pain free! I am so sorry you are going through this. Everything that could go right, has gone right, and at 29 he is in great health(except some extra weight). I will say though, he has had lots of prayer since he was born. I believe it has been his covering over his health. I will add you to my prayer list.
Health and healing in Jesus name! Linda
I have a prayer email list, but am unable to list it until I have 10 posts....perhaps later.

Re: Vp shunt= sad
 

Please don't be sad. I am sorry to hear you are in pain. I get severe headaches that the doctor says cannot be helped but I could not imagine what your stomach pains are like. I have had hydrocephalus since birth, the 1st VP shunt was put in at 6 weeks old. I grew up with it being a fact of life. I have never driven so I don't miss it. You are having to learn to live without privileges you have enjoyed for years on top of having surgeries, pain, and dealing with the paperwork of disability and medical care. I am also new on this site but from what I have read we have now found a wonderful support team. Friendship can make life easier even if it can't stop the physical pain. Don't give up. There is a reason for you pain, the doctors just aren't finding it yet.

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.

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.

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!!

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?

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.

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. :)