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....

Hi there,
wow so your suffer from stupid doctors too then?
I too have some stupid dopes as doctors at my local hospital, they dont even know what a shunt is, several times i had 'suspected shunt failures' they just stuck me in a room to be observed instead of getting me an emergency CT scan.
The time my shunt did malfunction, i displayed exactly the same symptoms as what i had before, but luckily i just happened to be at my specialist hospital at the time whilst having an icp monitoring.

I had my shunt fully revised in september 2008.
When i got really ill in hospital, i first experienced a shunt pain, felt like a gripping pain around my shunt area on my head. i had never felt this before, was moments later that i went comatose and had an emergency revision.
My valve was changed from low pressure to high pressure in that operation.
Since that operation, i have been experiencing this pain again and again, it started off being about once every 2 weeks and then gradually got more frequent, well all of a sudden actually. A week ago, i was getting this pain about once twice a week, but since the day before last, i must of experienced this pain over 50 times!! Its become very strong now too, went from me twtiching my face when it happens to me now scrunching up my face and flinches when it comes. Its intermittant, will last as fast as a thump, then go but then comes back out of the blue.

I really dont understand what this pain is, im also experiencing lightheadedness upon rising aswell as my eyes blacking out for a few seconds. I must say, i dont tend to get these thumpoing pains when im lying flat, i get them whilst upright or when my neck is propped up with a pillow, perhaps at a 60 degree angle.

Im wondering about whether its overdrainage.
symptoms of that, or so ive looked up, says...
dizziness
headache
fainting/ blacking out.

I was in hospital last week to have my shunt converted to a VA shunt due to abdominal pain from the catheter, i went through every problem ive experienced with this valve, my NS assistant wanted to revise the whole shunt because it sounded like i was overdraining.
But after waking up from the operation, my tube had just been diverted to my heart and the valve hadnt been changed.

...The only thing that the conversion has helped with, is the abdominal pain...the other problems still exist, im thinking its this damn valve, the low pressure valve, i suffered with for 12 years with no problems...i think this was right for me. But since they changed it to a high pressure valve, ive had nothing but problems :/

Hope you find out whats going on soon
Good luck

Hi, I've had my shunt since 1998 and have had no revisions. I, too, feel pain from time to time along the shunt tract and doctors ordered a CT scan. I have had many CT scans since, the latest one a couple of weeks ago. I haven't got the results of the latest one, but all of the others indicated the shunt was working, but wasn't draining enough. One neurosurgeon contemplated changing the valve from the fixed pressure one I have now to a computerized model, but he balked at that idea later, because I'm 53 and he said the risks of such a procedure outweighed the benefits.
I also have short-term memory loss and that has never changed. I also suffer seizures, headaches and balance problems, all of which are getting worse. Thankfully, I'm able to get around with a walker and live independently with the help of a home care worker.
The ER doctors here in Northern Ontario, Canada don't know what a shunt is either, but they usually like to send me to someone who does. Thankfully, most the cost of that is covered, but I'm not getting many answers either. My best advice is to keep pressuring the doctors and the neurologists to give you some answers. If the pain is bothering you, find out if they can at least minimize it. And find out why it's hurting along the shunt tract. You want to make sure the shunt isn't blocked. Don't push the panic button though. Several times, I thought my shunt was blocked, only to find out I was having normal pressure headaches. I've been given seizure medications, but the narcotic medications I used to take for the headaches have been revoked (too much abuse up here), so I use Tylenol for headaches. Your best bet is to get straight answers from the doctors and then decide what your best course of action is. But I wouldn't go without an explanation for pain along the shunt tract. That needs to be investigated.
Good luck, Jeff.

Hello, I'm sorry to hear of your pain. I've had hydrocephalus since childbirth but wasn't diagnosed with it until I had a massive seizure in the 7th grade, or 13. Since then I've had numerous revisions and now take the most powerful narcotic pain medicine available. Like you I've gone to the ER, specifically 3 nights ago because my sustained release morphine and dilaudid were not working and haven't been for some time now. Most of the time in the ER I get very sympathetic, caring doctors who know me and will give me several injections of IV dilaudid which seems to work but on some other nights I've gotten this old idiot of a doctor who thinks I'm there to get a fix or worse thinks I've ran out of my meds and came running for a quick fix. The best thing I can recommend is to see a pain specialist so he, or she can prescribe Morphine, Dilaudid, or if you can afford it and have great insurance, the Fentanyl patch which is great and in my opinion the best. Good Luck to you and God Bless

It is because in the ER there is not the luck of a neurosurgeon always there to "save the night" and help you. My father always tells me to go through my surgeon's OFFICE ONLY for an appointment, because like you said, an ER doc won't undersdtand hydro, and send you hope with some lame non-working pain-killer, even if he ordered tests. I have experienced that too much in the past 6 years since my first adult shunt malfunction, but it is a lesson learned.

I had a shunt put in about 5 weeks ago and I have memory lapses and alot headaches but my Doctor just ingores me. Should I be worried yet?

[QUOTE=Felicia1981;477225]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....[/QUOTE


You are not alone, my shunt does the exactly the same thing, so far I get the same response from the surgeons, but I have realized there are different pains now, for the shunt, the Cranietomy, and the drain tube in my stomach
the only help I got was from talking with other patients, but good luck!

I KNOW WHAT YOU FEEL LIKE I'M HAVING THE SAME PROBLEMS. I HAVING TIGHTNESS AROUND THE SHUNT. AND ALL UP AND DOWN THE SHUNT TRACT. I BEENING FEELING LIGHT HEAD, DIZZY, HEADACHES, VERY BAD THROBBING, DOUBLE VISON TOO. AND VERY CONFUSSED, AND MEMORY LOSS TOO. I WENT TO THE ER TOO, HE DIDN'T EVEN STAY IN THE ROOM WITH ME LONG NEITHER. HE TOLD ONE OF HIS NURSE TO COME IN AND SEE ABOUT ME. THAT AND PRESCIBING ME PAIN MEDICINE THAT DIDN'T WORK. I'VE BEEN LIVING WITH THIS PROBLEM FOR 4YRS NOW. AND STILL HAVING THE SAME PROBLEM. THEY TOLD ME THEY WASN'T GOING TO DO ANYMORE SEUROGERYS ON ME. JUST GIVING ME ALL LOT OF MEDICINE THAT DON'T WORK AT ALL. SO I'M PRAYING FOR YOU. AND GOOD LUCK ON YOURS.:eek:

Well, it seems to me like we have allot in common for sure. In Octor of 2008 I underwent surgery to replace the fixed pressure shunt that had been in my body for nearly 38 years. I was replace with the Medtronics programmable vp shunt and in two weeks thy discovered that I also had high protein levels in my brain as well and needed to install a secon shunt on the left side of my brain too. I soon discovered thoughafter just one month that the doctor did no treplace the whole shunt system when he put the new one in. He just connected the new shunt to the old catheter that had now become stuck to my brain. So, even at a low setting of 1.5 the pain was so intence that in just two months I had to have surgery to remove the shunt he said I needed sooooo bad. I suggested he run a brand new one paralleled to the old one but he said he didn't have to to do the surgery because he was retiring and to find a new surgeon a.s.a.p. Well it took me nearly 18 months and a whole bunch of pain and suffering too, I found a new neurosurgeon that agreed taht indeed I needed two shunts. I had seen at least 10 thers prior to him and they disagreed and left me helpless. Well I now have two of the Medtronics programmable shunts and both hurt really bad and I need to take 54 milligrams of morphine and 32 milligrams of dilaudid as well for the pain. My legs, feet, arms and hands all hurt really bad, and I think that's got something to do with the fact I also have spinal stenosis so it takes me at least one full year to recuperate now do to the spinal cord injury I had back in 2001. Anyway, I'm grateful to be alive and know God has something to do with me being here, I just wish I didn't have to take all the morphine and dilaudid everyday but I guess its become a daily routine like brushing my teeth in order for me to function normally. Check with a pain specialist and see if you could benefit from some type of opiated medication, or something that's drug free as well like neurotin. Good luck to you always.


Sincerely,


Steven J. Esler

Here is my story... five years ago and on my first wedding anniversary and after a series of headaches that I ignored and thought well maybe I overworked my self or something.. maybe its my sight ... what ever but I never really took it seriously until i collapsed that day five years ago -- My husband took me to the hospital and there he was told that I have a cyst on the brain -- they said this is something I was born with but I never really had any problems until then. I was admited to an emergency surgery where they placed a VP shunt... I felt good at the time the recovery was'n't that bad -- the headaches were gone -- the thing that bothered me the most was the shaved head... it was a tough time but my husband was very supportive, he stood by me and I got throught it all with his help --- I recovered and I felt great -- I was told to forget about the shunt and live my life normally which I did -- then three years later -- the shunt got blocked which I did not know could happend at the time --- at the time we had just moved to another country -- and Again I was admitted to the emergency room they unblocked the tube and thank god did not have to operate on my head... again the recovery went well but left me a little shaken ... can this really happen at anytime, anywhere the shunt can get blocked!! it was shocking to me and scary.. very scary again i tried to forget about it and resume my life --- I'm a very practical person by the way and I try to always look at the bright side ... I joke about everything and don't take bad things too serious .. cause I think life is too short so better enjoy it... so to continue my story ... I resume my life .. I was working in a publishing agency at the time -- I was handling a corporate magazine, dealing with publishers, printing and a creative team ... really stressful job .. yeah I forgot to mention for the longest time work was a huge part of my existence... Anyway after that incident with the blockage again i resumed my life normally.. i was very scared most of the time and I was too scared to die.. but i tried to push the thought away and enjoy life which i did actually... i travelled with my husband ..with friends ..and with work .. i went out and really enjoyed my self ... almost five years past on my marriage and we wanted to have kids .. my doctor told me that I shouldn't worry about the shunt and have kids if I want to ..well that's what I thought ... and we were trying to have kids but then found out that we will have to resorte to IVF. I got depressed and worried but decided to go ahead with it .. i said to my self I'll try it once, if I don't have kids then that's it atleast I'll try.. I was too scared to go in the horrible cycle of just trying to have kids. I spent almost 3 months taking the hormons and medications for the IVF then I did the tranfer and yeeeeeeeeeeay I was pregnent, later found out I'm having twins... I enjoyed the first part of the preganacy but was too tired towards the end and on my 7th month .. I gave birth to two premature boys.. they were tiny... but beautiful they stayed for almost two months in ICU then finally they came home .. it was tiring - the song DAY & NIGHT was my theme song ... I woke up everyfour hours ... some times two cause each would wake up on his own time ... GOD it was tough.. I had my family helping though.. my mum came and then my cousins ... they were all very supportive... at the time I was on maternity leave ... I was planning to go back to work... twins no twins I gota work... two month after my pregnancy ... I get admitted to the hospital again !!! the shunt got blocked... the scary part is I can't remeber how or when did I go to the hospital what I remember is that I woke up one day and I was in ICU ..!! I thought I was in a bad dream... I had three brain surgeries .. the first one they tried to unblock the shunt but couldn't ... so they decided to remove the shunt and put a new one.. in the process I got a clot when they removed the old shunt, so they had to drain the blood externaly ...afterwards I got internal bleeding .. they got me out.. then another surgery in between doing more stuff and then finally I got a new shunt with two tubes leading to my stomach ... Now surprisigly enough I'm FINE... I'm walking eating, playing with my kids, talking and even working!!! which I'm grateful for...THANK GOD FOR ALL OF THAT .. writting this thread and putting the sequnce of events in writitng actually made me realize how lucky I am .. I have two beautiful boys... they are amazing thank god and I am working as a producer for a TV programme with a really nice and understanding team and I have my husband who is very supportive and lovely friends...I am realising how lucky I am now... the reason I decided to start a thread .. is because I am very scared... I feel something bad is going to happen and I'm too scared to leave my kids ... I'm hoping for the best, I've suffered a lot and I really don't want to go throught this again... I get headaches occasionaly and everytime I get really worried.. is there something wrong... my surgeon here advised me to remove the cyst and live with our worries ...this is what lead me to this site... I was looking around to get some advice...part of me want to get rid of the shunt and the risks of it but then I'm too scared to go through the surgery again... and I also read that a lot of people get cloting after the removal .. and again insert a shunt!! so is there a point of removing the cyst?? can someone help me...