Vp shunt= sad

humphreys270 · 04-01-2013, 02:37 PM

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.

annakkro · 04-01-2013, 05:57 PM

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.

erie · 05-11-2009, 11:02 AM

Quote:

Originally Posted by glittergirl

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*

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!!!!

jadiee-x · 05-13-2009, 08:41 AM

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 =)

kl2568 · 12-26-2010, 07:51 PM

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.

Bhavana · 03-05-2011, 02:59 PM

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

DrMargi · 02-22-2011, 04:30 PM

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.

miche27bbd · 08-29-2009, 04:25 PM

Quote:

Originally Posted by erie

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!!!!

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.

jlane24 · 03-04-2011, 03:37 PM

Quote:

Originally Posted by miche27bbd

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.

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

jen623 · 05-20-2009, 01:20 AM

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!!!

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!!!!!

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