Hydrocephalus/VP shunt problems

[briah]

I was diagnosed with hydrocephalus a bit later in life than most patients with it, I was diagnosed at age 12 (1999). Last year, I became pregnant unknowingly which increased my ICP, and a VP shunt was placed. As of lately (the last two months) I've had excruciating headaches.. every day, and numerous ER visits later, only to be diagnosed with a migrane. However, the last ER visit I was finally given something else, that some patients with VP shunts have 'shunt headaches'. I've never heard of this, and never had anyone else tell me anything about a 'shunt headache'. Has anyone ever experienced anything like this? I've been told to look into pain management but have no insurance, so I think I'm out of luck until I can get some.. I'm debating on having the entire shunt removed. Could this even be an option? I just really need some help with this, I can't keep living in pain like this.

[Laraelynn]

Have you heard anything from this  my sister is suffering from what she thinks is a shunt headache also she does not know what to do

[Threewheelmobile]

I know exactly what you are going threw. I have had headaches galore. Is your headache around the shunt does it feel like its pinching?
What kind of shunt did they put in your head?

I have an electronical shunt. MIj water on the brain was only discovered when I was 32 much later than it had started. I know from the time I was around 12 that I had water building up in my brain but didn't get threw to my parents back then. It was only until we had been married 12 years that I had been operated on on our wedding anniversary.
the first shunt that they had put in was a shunt that was suppose to open when the pressure build up. It didn't do what they had hoped for. It was two years later that they replaced it with the electronical drain. This on skipped back quiet a few notches. The build up of fluid was terrible and hence were my headaches.
I talked to a young lady who went over to Germany and she had her shunt removed but they took spinal fluid taps out of her spine. She doesnt have a shunt anymore.
However you will need to consult a specialist on this.

God be with you.
Threewheelmobile

[Threewheelmobile]

Shunt pain can have two causes, 1. The drain is not working properly and is not allowing enough fluid to pass threw.
2. You will probably notice that with the change of weather that your headaches get worse.
When it is sunny the headaches seem to increase or you feel as if you have tightness around the head.
When it snows it may pick as if someone is sticking a needle in the place when the shunt has been put in.
When it rains it will calm down.
The atmospheric pressure has a lot of influence on how you feel.

[rudy_parr29]

I've had a VP shunt since 33 days old. My neurosurgeon says the pains I've had are only tension headache. Shunt failure is an extremely worrisome event for me. My neurosurgeon sais on 04/02/.09, that the shunt cord's migration back to my right side under scar tissue is not a worry, but he knows better. THe man had to do surgery on me 6 years ago for a tethered shunt cord. This neurosurgeon, in my opinion is not very concerned abuot my health. He has said that when I asked him about a third ventriculostomy for shunt indeoendence, tthat I was obsessing about the procedure. I have collapsed ventricles. They are"slt-like" in appearance according to his partner. I have had significant headaches around the shunt itself. They just say it's nothing. I have to go to St.Louis soon for a second opinion. The present neurosurgeon refused to check the shunt to see if it is working. The hospital said the day before that it is disconnected.Since the shunt is on the right side of my head in the back and supposed to be going down to the bladder, according to my x-rays, I have not had very pleasant conversations with the neurosurgeon about this. They say it is going to the right lateral ventricle, but the xrays show the shunt going past the right lateral. What do you think? This shunt has been in since age 9 and I am now 29 years old.
Could a third ventriculostomy help? or it is time to remove the shunt?

[K272010]

I also have a VP shunt...my shunt is 1 1/2 old i was 19 when they found i have psudotumor cerebri. I also had 4 lp shunts in one year that just didn't work. i was reading all of ya'll post and i really don't think they can take out a shunt..the reason you have the shunt so to take the fluid off of your brain that is th purpose of it. if they take it out then you will really get headakes and maybe even vision loss due to too much pressure on your brain. if you have a shunt then ur body doesn't drain he fluid like it is spose to. trus me i have a headake everyday of my life. just found out i am pregnant now my headakes seem to be slacked off. i think the best thing to do is go to a different neurosurgern that will look at your case and figure out what is best for you and to help with the pain. i have never heard of shunt headakes but that does make so much since i do believe in them now that i have read about them..i wish everyone with this horrible conidition that we all have the best of luck and hope that one day we all will have a cure from everything and beable to live a normal life like everyone else....god bless everyone and hope you all get good news in your future!!

[MzMary59]

Rudy, I know what you mean when you say the neurosurgeon doesn't seem to be concerned.  I've worked with the government for 28 years.  I developed cerebral spinal fluid in my spine and a spinal cord tumor and had surgery June 2008.  As a result, I'm disabled.  I suffer excruciating, chronic pain, numbness, tingling, electric, aching, shooting pain 24/7.  I'm on so many pain medications that it's frightening.  The fluid has reappeared and the neurosurgeon went as far as lying to me.  He obviously did not know that I had copies of my MRI reports, because during my last visit with him (May 09) he commented that I no longer have a Syrinx.  The Syrinx has been continuously diagnosed in every MRI I've taken since Oct 07 til just last month, May.  I'm very angry that a doctor performs surgery on you, and you come out totally disabled, and the response from the doctor seems to be, I've made my money, now, later for you.  I really feel like I've been raped.  My good health has been destroyed, and the responsible doctor says, "I'll see you in a year.  This is what you say to well patients, not to patients who have recurring diagnosis, who's still suffering excruciating chronic pain.  He keeps giving me these hopeful lies.  Initially my recovery period was 6 wks, then 4 mths, then 12-18 mths.  It's indefinite and he knows that, but doesn't give a hoot about my welfare.  He gets paid whether I'm dead or alive, crippled or healty.  But, I believe God has a very special place for those type people.  I pray that everything works out for our good, as the Lord has so promised in His Word.  He said by His stripes we were healed, and that's what we must believe.  The healing may not come in the manner that we are looking for it, but it shall come.  As surely as day follows night, we shall be brought out of this pain that we suffer.
GOD BLESS AND KEEP YOU,
MzMary59

[m3iron]

I had a VP shunt placed when I was 19 years old for hydrocephalus. It worked great for 4 year until the catheter portion became clogged a year ago and they had to do an emergency revision and replace that part. I have had chronic headaches on the right side of my head, with the most pain coming from the shunt and incision locations in the form of burning, searing pain, with shooting pain occuring when the area is touched. I went to a neurosurgeon for 4 months to try to remedy the headaches, but all he did was try different settings on the shunt, which he later revealed to me that he assumed from the beginning that these wouldn't work. He recommended that I go to a neurologist, who seemed to understand the pain much better. He first prescribed a low dose of amitryptaline and then later gabapentin (not sure on the spellings) along with physical therapy. The drugs are taken at night before I go to bed and the amitriptyline seemed to lessen the headaches in the morning, but the pain always returns in the afternoon and is returning earlier and earlier each day. The physical therapy seemed to reduce the pain for short amounts of time but it ends causing more increased pain later on. Hopefully this information gives you some help and if anyone out there knows any solutions to my existing pain I would appreciate your input.

- Mike

[Hmdiz]

I don't know if you might be interested, but before and since my vp shunt placement I have noticed that sleeping elevated in a recliner greatly helps my icp headache pain. I had a break from the headaches for a few weeks, but a month after the surgery I am having similar headaches. Going to get it checked soon. Also, I have abdominal pain ever since the surgery. Oh well, we'll figure it out eventually. My icp is caused by an inoperable benign tumor inside a large vein. Also starting gamma knife treatment soon to stop the growth of the tumor. I am 35 and the mom of 2 young boys. I used to wake up every day with a headache until I found out about the recliner trick - by accident. Too tired to get up and go to bed. Good luck!  

[crazy4layne]

Hello all. I am a 31 year old female that has just been diagnosed with obstructive hydrocephalus. It has taken me 5 doctors to get to this point. My neurologist first said I had it in June and then changed his mind, telling me I had a Chiari Malformation, which I found out is NOT the case. I have been to a neurosurgeon, and have a CINE MRI scheduled for Monday. I feel terrible. My NS said I have probably had this for close to four years. I am so freaked out right now. I don't know what is going to happen to me. I keep reading all these awful things about VP shunts, and revisions, and shunt troubles, does anyone have any POSITIVE things to say? I am to the point that I do not want to do anything about this and just ignore it but the doc says if I do that, I will probably die. Someone please tell me some good news because I'm having a VERY hard time accepting this. Thank you.

[tiek72707]

It has now been 2 weeks & 3 days since my 6th surgery & I am experiencing an all too familiar pain on my shunt, down along the tubing to my collar bone. The only way I can describe this pain is that it is like a very bad muscle cramp, but it's directly on my shunt. It. consists of a tight, throbbing sensation starting at the shunt and running down into my neck, plus my eyes have been throbbing in sync with the throbbing on my neck.I've had this pain for over a year now and the only help the dr's can offer is more shunt revisions! Each morning when I wake up I can feel the scar tissue tear along the shunt tubing at the base of my head below my left ear, and I know each surgery I have makes my scar tissue even worse.Is anyone familiar with this kind of pain associated with their shunt? Does anyone have any suggestions about how to deal with this pain? My ns sent me to pain management at the beginning of the year and they said the pain was due to my occipital nerve being severed during a revision in dec 2008. They did 3 different nerve blocks (2 of which were under x-ray directly into my spine!!!) which only made the pain worse. I quit going after they suggested implanting an electrical device into my spine that would shock me throughout the day and said that it could possibly reduce the pain, but they couldn't offer any guarantees. The only relief I have found on my own is to recline and rest my head on a pillow (which is not very feasible for a 28 year old that needs to go to work every day!). The pain will almost go all the way away when I do this but as soon as I stand up it hits me like a kick to the head!I've tried rubbing the area which tends to make the throbbing worse. I've tried physical therapy and have gotten great exercise on my shoulders & back but no pain relief. Someone had suggested acupuncture, but I'm unsure of trying it. Has anyone had success with acupuncture?Any help will be greatly appreciated!

[snugglebug0105]

I’m not sure if you can answer any questions that I might have about Hydrocephalus. My cousin, now 26 was born with Hydrocephalus. My aunt fell during the pregnancy, leading to him being born at 6 1/2 months as a premature baby. He had his first shunt put in when he was a year old. He suffers from epilepsy and also has cerebral palsy. At the age of 20 he was hit by a car while walking across a cross walk. At this time he had his spleen removed and doctors now only realized that he had one kidney. After 2 and a half weeks in recovery at the hospital and years of physical and mental recovery, he is back to normal only to learn of on coming complications with the shunt.

He has had 4 shunt replacements since then, only replaced from the first valve in the head down, thus not replacing the part in the brain. He gets headaches which lead to throwing up the cerebral spinal fluid, and shunt replacement. His cerebral spinal fluid had now lead to a bacterial infection in the shunt, where he might need to have the entire thing replaced. Doctor’s have informed us that there is a lot of scar tissue in the abdomen region and they are expecting, that 25 years later there is a lot in the ventricle of the brain.

He is currently under going inter-venous treatment and a series of injections of vancomycin directly into the start of the shunt in his head. They hope this kills the infection.

Following this he had the old 25 year old shunt removed from his right side of the brain. surgery a sucess. They put in a temp shunt until the infection clears....

TOMORROW, they remove the temp shunt from the right side of his head and due to the amount of scar tissue and the infection, they will put a new shunt w/ an updated value on the left side of his head.  
QUESTION:   DOES anyone have a shunt on the LEFT side of their head. The neurosurgeron said that they typically put shunts in the right side because the left side of the brain is smaller and controls speech.  

PLEASE GIVE ANY FEEDBACK----

To others who asked about shunt headaches.... He says that he can feel the pressure right at the start of the shunt above his eye. He then gets pressure on his neck, and within 10 mins of it start, he basically goes into a comatized state, becomes weak with hands shaking and can't move at all. After this he throws up to release the pressure and then things are back to normal.... Being in the hosptial they took his shunt out and drained it externally. Before the surgery the turned the value off so that the ventircals could fill up.... which caused several headaches....  hope this helps.... demand an answer from the neurosurgeons... WE HAVE SIX that have been assoicated with my cousin and in 2008 one said that this surgery needs to be done ( removed from the brain and reput in) and other surgerons "OVERROAD" this surgery.... well now the infection as intensified throughout his body and shunt and that same docter that origanally was going to do the surgery is now on STEP 3 of this surgery... GO FIGURE>  best of luck to everyone.
The reason I am writing, is to find out if you would be able to provide me with any information regarding the surgery or the complications that can occur with removal and replacement of the portion of the shunt that has now grown into the brain after 25 years. We are concerned about the amount of brain tissue that has grown over the shunt.

PLease help: does anyone have any knowledge about this type of procedure?

[catmad1973]

When I was born in 1973 I was diagnosed at 16 days with Meningitis and Septicaemia plus septic hip.  At 3 months it was found I had hydrocephalus as a complication to meningitis and a shunt was installed.  
I have had replacement shunts 1976, 1980, 1985, 1993 and now 2010.  This time I have had a new VP Valve Strata 1.5 Magnetic type put in.  Since this has been in, I have had continual problem with ongoing nausea and now extreme headaches.  This is the first this problem has occurred after a replacement.

[enny915]

iam 36 years of age and i have had a vp shunt in place since i was a baby but my mum should have took me back to the hospital when i was about 10 years old to have the shunt altered but she didnt bother i have now been told the sahunt is now redundant as my own system as taken over iam now to old to old to have the shunt removed as it would be a massive operation as anyone else got the same problem or got any suggestions would appreciate it

[NLightened1]

I am sooo sorry to hear about your experience. I hope you sued the crap outta that neurosurgeon. My wife is having similar problems with hers. I pray that we find someone to listen to her. I pray for your recovery and well being also.

God Bless

[trev34]

i had a shunt fitted when i was 3 months old because my mam was told i have hydrocephalus everything went fine and now im 18 and i still have the same shunt in now that i had put in when i was 3 months old. I get the odd headache but thats about it but i really want to join the army and they told me i cant join with my shunt in and if i have it removed i have to wait 3 years to join and i have an appointment with ur doctor to see about having it taken out im a little nervous.

[rockincrew27]

I have a 1 year son who has had a shunt placed since he was 3 months old. I have a question though. I took him to our daughters cheerleading competion and he seemed very uncfortable and started trwing his head back and screaming. Do patients with shunts have HIGH SENSITIVITY to florescent lighting? Once i took him out of the area he calmed back down. Please help if anyone has a answer to this.

[Cath278]

Hi.I am not sure I can help or relate as your son is so young but I have a VP shunt, ( for IIH, raised intracranial pressure) and would find , that situation an ordeal, myself.

I would because of the raised pressure, it would cause vibrations in my head, the flashing lights would hurt my eyes.. It would cause a rebound effect in my head, like a loop of noise.But it would hurt as it would feel twice as loud.
It could, also, be hurting his eyes.The flashing lights would make me feel very nauseous.
Im not sure your son would share the same symptoms, but it sounds like he may. Poor child!

May I suggest ear plugs and sunglasses for such events? I can imagine this will be a bit difficult to get a year old to do, but it may help so you can continue to support  your daughters cheer leading! Best of luck, Cath278.

[emmascott]

Reading your post brought back memories of my sons' first year of life. Scottie had his first VP shunt placed when he was 6 days old,and we found during his first year he was extremely sensitive to noise,lights,and pretty much anything that seemed to overstimulate him. Being out in the community doing normal everyday stuff was anything but normal as the sound of traffic,kids playing loudly in the park,and bright lights in the grocery store would send Scottie into a screaming frenzy.It was a very difficult time for everyone in the family,and I ended up asking for help so that I could get out to do what needed to be done,and Scottie could be cared for at home. We were given 14 hrs a week of homecare,and this helped greatly. Scottie is now 15,and although he still does not fare well with too much stimuli it is nothing compared to those first few years of his life. Do you have any support from outside agencies,or parent groups that can relate with having a child who is hydrocephalic??

[MaxiHK]

Firstly, I read most of the posts by various people who for whatever reason have to cope with hydrocephalus. Some of the things people have to endure makes for very upsetting reading. However, I was 41 when I was diagnosed with hydrocephalus. I only had the MRI because I noticed some cognitive changes and was advised to have the MRI. When I got the results the Neurologist told me I would need a VP Shunt operation and offered me a discount because I was unemployed! He said that I had days, not weeks, to consider the decision. Thankfully I decided to get a 2nd and 3rd opinion. I found a really helpful and positive Neurologist who told me my NPH was "idiopathic" but I suspect it was actually caused by exposure to something called Toluene Di-isocyanates, or 'TDI's'. I have not had the ventriculoperitoneal shunt operation and have been persevering with pain management. In the past 2 - 3 weeks the headaches have become more frequent and the medication (Tramadol 100mg) makes feel very nauseous and I feel that it's only a matter of time before I have to have the op. Does anyone have any advice for me? It doesn't matter how small or relevant the advice is; I need advice from people who have to live with hydrocephalus. This is something I cannot trust anyone else (doctors) to give me advice with.

Thanks and hopefully there is something just around the corner that will help all of those who suffer daily with this condition.

Peace

[MimiTizzano]

I was diagnosed with BIH and Arnold Chiari malformation in 2007 and had many operations toput in a working shunt.for a long time the shunt was ok, it only hurt around the operation site but last year I began getting really bad headaches again and severe pain directly on top of the shunt. They say this is due to migrains and I'm worried that I'm not being investigated properly. When ever I'm seen by my neurologist and I tell him about the pain he just says its migrane but never checks me out and the pain is getting worse.dose anyone have any light on this? Thanks .

[becki_c]

I was diagnosed with BIH after I had meningitis in 2003, I had lumbar punctures every 3-4 weeks until September 2009 when I was told I needed my first LP shunt as the lumbar punctures weren't managing the situation. I was in hospital for 8 weeks and had to have 2 further shunt revisions in the time I was in there as they couldn't get LP shunt draining properly or sited correctly. It has caused nerve route damage in right leg and I now have to walk on crutches too. I switched neurosurgeons as the one who had carried out the previous surgeries had denied there was any nerve damage, even though it was stated in the MRI reports. When the last LP shunt failed, my new surgeon told me I needed a VP shunt, that was sited in Jan 2010. My headaches are continuous too. I have never had a day since the meningitis without a headache. I have been told that they are due to migraines (something I never had before the BIH), they are due to too many painkillers (which has been disproven as I stopped all pain meds and the headaches were still there just worse!), they are due to stress, lack of sleep and tension or depression.

I have seen so many pain management consultants, neurosurgeons, neurologists and alternative therapists (acupunture, homeopathy, chiropractors ect) and the overwhelming impression I get is that if the medical/surgical doctors can't "fix" you or don't have an immediate or obvious answer as to what is wrong with you, then you are just dismissed and almost swept under the carpet as a problem for someone else until something obvious comes up for them to deal with.

My headaches with my VP shunt have not got any better since it was sited. I just now am unable to tell how much of it is due to a high CSF level, and how much of it is the shunt or external factors.

I found out today that my shunt is now not draining properly again, after less than a year. I feel like telling them to take it out and I'll go back to the lumbar punctures, or try another LP shunt, but deep down, I know that's not an option. It's just so frustrating that every time something goes wrong, nobody seems to be able to have a quick fix or an easy answer. As if living with a condition that causes constant headaches isn't bad enough, we all have to live with doctors who don't seem able to be honest and open about what the future may hold.

Good luck to you all.

[TexasRudy]

My mother had a shunt place a little over a year ago to help with brain swelling due to a fall (note: she is also a brain cancer survivor).  While she had some issues with short term memory after completing her cancer treatment (radiation & chemo), shortly after having the shunt placed (~1-2 weeks) she became VERY non-verbal & just seems to want to sleep or nap alot.  From time to time she will respond with a few words or nod yes/no & on one occassion (after being admitted to the ER for a blood infection) became very responsive for several hours (back to the way she was before the shunt placement).
We have visited her neurosurgeon several times & he has found no shunt malfunctions & we have adjusted her shunt up & down and now have it at the lowest resistance setting.  I keep reading about side effects others seem to have encountered (even though they are not typical) and would appreciate if anyone knows of any side effects that are similar to the issue with my mother.

Thanks & any help is GREATLY appreciated.
- Rudy

[dave197337]

i have a headache that came on suddenly out of no where and i have 2 1/2 shuts in my head one from when i was a baby and half a one from the same time cause at 13 i had a revision and they tried to remove it and it disinegrated in there hands so they left the rest and did the revision is where the 2 and a half come in but like i said i just got a head ache oot of no where and it is on the side of my head that has the good shunt and so far its only a head ache but light bothers me and sound too i am not dizzy or throwing up yet so could this be a shunt issue or not i am 37 by the way or is this just a bad headache in a weird place or a migrane

[steph_ty_trent]

I'm not sure what has transpired since your post, hope you are doing well. I did want to tell you if vp shunt was mentioned, I would ask if a thrid ventriculostomy would be an option for your condition.