Hydrocephalus/VP shunt problems

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 (migraine). 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 (migraine) 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 (migraine)

[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.

[Rene1975]

I had a VP Shunt Placement at the age of 21 years old for Accute Hydrocephalus.  It is now 15 years late and I am having burning sensation in my head again and also burning in my stomach. I wonder if my shunt is malfuctioning?

[jj_1978]

I am 32 years old and was born premature with a cp shunt days after birth and cerebral palsy. Due to being on too much oxygen I have a lazy eye. I have had 6 shunt revisions with the last one being in 2006. I have chronic headaches and the only thing that works for me is icing the side of my head where the shunt is located with an ice pack and cranial sacral therapy. I have a tough time concentrating and am in the process waiting for the doctors to respond back to me regarding an appointment with Mayo Clinic in Rochester MN for a 7th brain surgery to replace the vp shunt with an "updated version". I am dealing with stabbing headaches and dizziness everyday. I have found that cranial sacral therapy has helped in the past and I have an appointment scheduled this coming Tuesday. The therapy works for 2 to 4 days.  I have tried every drug possible and all they do is make me lethargic and make me sleepy. I hope this really helps and any questions feel free to email me at ***@****

[midwestbelly4]

my husband is 68, has had normal pressure hydrocephalus since 2004.  He has balance problems and poor short term memory.  We couldn't get a diagnosis until I began research in earnest and then , after I suggested NPH, doctors fell all over themselves agreeing with me.  It is one of the most non-diagnosed disorders, often confused with alzheimer's, dementia, and parkinson's.He had a VP shunt placed 7/2010.  Since then it seems to reset itself every month, and the fluid outflow is adjusted by a magnet that is placed on his scalp. I don't know whether it is a malfunctioning shunt or just the way it is.  The neurosurgeon doesn't, either.  Anyone with experiences like this?

[polly79]

I was diagnosed with pseudo tumor on Jan 6 2008..I had a VP Shunt placed March 8 2008 In an emergency surgery at UCSF medical center. Since my surgery I have had my share of ER visits to many to count..I suffer horrible headaches, I don't feel like myself anymore..sometimes I regret having the surgery only because I feel all alone in my pain in this disease. I  find comfort in reading all of your stories and I don't feel like I'm going crazy because I see im not the only one who experiences the pain that is hard to describe to those who are not going thru it..pain in my head,neck stiffness, trouble sleeping on shunted side, stomach pain at incision site, tenderness on my head..stabbing at my shunt, sensitivity,throbbing along tube at my neck, weather pains...etc..:'( is there anyone else that feels the same???? Good luck to all...I hope there will be a cure for this one day...

[masonsmama2010]

I understand wanting to take the shunt out, BUT is it really worth opening up your brain and central nervous system to infection just to take it out? If it is not bothering you or causing any problems then it is simply safer all the way around to leave the shunt in place. I have an 8 month old son who has a VP shunt due to a grade 3 intrauterine hemmorhage that caused a blockage in the csf absorption. He has a programmable valve and his NS said that he would be tested to see if his shunt was needed in 8 or 9 years (when he is old enough to tell me if he has a headache,nausea, blurred vision etc.) The NS said even if he does not need the shunt later in life that the risk of infection is too great to take the shunt out simply for cosmetic reasons. It will just be left where it is non-operational.

[Yankeegurl62]

My daughter is 13, and has a "good" form of cancer of the brain, known as Junior Pilocytic Astrocytoma grade I.  She developed a dura leak after her first surgery-a posterior fossa craniotomy, and she also had c1 and c2 cut due to her brain herniating. She has also had a third ventriulostomy--didn't work and she now has a right vp shunt. She has had two revisions in the past year, and she is having chronic headaches--but on her left side, and they are now going down her left side of her neck.  Her neurosurgeon isn't concerned, so tomorrow I'm taking her to see a new neurosurgeon.  She is in so much pain, and only on otc meds.  Has anyone else gone thru this after surgery for a tumor (I'm told she is in remission) Thanks

[bobswife5150]

My husband has a brain shunt, and was set to leave the hospital on a Tuesday. The Thursday before, his rehab Dr. made him get an exit MRI before he left.  We didn't want it but she insisted.  Right when he got back from the MRI he had severe neck pain if he sat upright in his wheelchair, but felt better reclining in the chair or laying down.  We are certain the MRI did something to the shunt, but the shunt was adjusted back to where it was.  8 days later (He did not go home that Tuesday, and he has been in the hospital 4 months) the drs order another MRI of his neck and head. Right after the MRI he could sit upright without neck pain and we were thrilled, but the next morning the neck pain came back. It was too much of a coincidence that the neck pain happened right after the first MRI, but the DRs can't find the cause. Has this happened to anyone else?

[reddingo]

My daughters were born with a Dandy Walker malformation with shunt placement after birth. I'm sorry to say my middle daughter passed in 2000. She was 4 and passed in her sleep. Her younger sister is 13 now, but experiencing headaches. She had shunt revisions as a baby, and one when she was in first grade. But she really has been doing so well. I have an appointment with a neurologist. I have taken her to er a few weeks ago with a headache, but what they prescribed is not helping. I just battled breast cancer and gave her one of my hydrocordone which also did not help. I don't know what to do, because I do not want her taking a lot of pills. I pray to God for all of you, and I will also have my church praying for you guys.

[trasun]

Maxi,
I am a 44 yr old female and similar to you I was 42 yrs old and found myself awaking in an ER room after having a grand mal seizure!!!! I was like what the?? and from there my life has changed in so many ways, ECG showed up negative, then off for a MRI which showed TSC and HCP and I can't quite put my memory on the name of it but my grey matter an white matter are back the front in my brain... so my neuro wants to shunt me sends me off to a surgeon , surgeon wants to leave me and here I am today nearly 2 yrs down the track with uncontrolled seizures and so many changes in drugs I've lost count....so I go to my optomotrist just yesterday to have a macular scan,after noticing my left eye being some what odd lately.
The scan showed up intercranial pressure behind the left eye,due to the fluid, hence it being odd.....severe in the left and moderate in the right eye so all they're hesitations and it's come down to this point now so I could have had the shunt and all this behind me. Instead of them dilly dallying around.....so I know little about this procedure nor the condition.....so if you can shed some light on this for me on what you know or understand that would be great...

[crystalriley777]

my husband has two vp shunts from having hydrocephulus when he was eight.. now he is complaining about alot of head aches and a tingling sensation down the back of his neck... he also had a little blurred vision at one point. somtimes the headaches will go away.. but then they come back.. please someone tell me should i be worried?

[crystalriley777]

my husband has two vp shunts from having hydrocephulus when he was eight.. now he is complaining about alot of head aches and a tingling sensation down the back of his neck... he also had a little blurred vision at one point. somtimes the headaches will go away.. but then they come back.. please someone tell me should i be worried?

[gus6982]

I hope your husband has now been properly diagnosed and treated. These symptom's must be regarded as potentially very dangerous. I have had Hydrocephalus since birth 50 years ago and have had many operations. One when I was born to put in a old type VA SHUNT and since then VP SHUNTS have been used, last one 3 years ago. Shunt problems include BLOCKAGE.INFECTION,OVERDRAINING AND UNDERDRAINING. When I have had problems I have always had blinding headaches,dizziness,extreme neck pain and stiffness and nausea and sickness. Three of the major symptoms of shunt blockage or infection are headaches. neck problems/symptoms and dizziness. So anyone reading this who has these symptoms with a Neurological shunt in situ should deem this to be potentially life threatening and should seek very urgent medical help preferably with a Neurologist or Neurosurgeon. I would not trust a family doctor as very few of them are knowledgable enough in this specialised field. In 1992 I had a blocked shunt and was the first time since I was a child. I went to a family doctor who told me it was migraine, Next day headache got worse I was dizzy, double vision, physically sick, called doctor again, still said I had  migraine and gave me stronger painkillers and stemetil for sickness, this went on until the 5th day when still with these symptoms I was going in and out of coma until I collapsed altogether and a flatmate called an ambulance. Altogether I saw my family doctor three times with these symptoms and he had my medical records and it still never dawned on him that I had a shunt problem. Mind you I should have guessed myself,but I thought that it was only a childhood illness and I was cured. How wrong can you be? Should have sued him but notoriously difficult in the UK.For info: cannot be cured only treated. So my advice to you and everyone here is if you have these symptoms insist on seeing a specialist and treated it with the utmost urgency Incidently I have had further operations since then and many other complications have arisen, but I may write about that some other time.
I wish all here all the best and hope you all get the support when you need it. I am lucky to have fine specialists and a good GP treating me regularly know and I wish the same for everyone else without having to push heaven and earth to be treated properly

[wayne294]

Hi. my name is Wayne. I'm an older guy, and was diagnosed in 2006 with hydrocephalus. In 2007 I had a shunt put in. It is a Codman Hakim from Johnson and Johnson. It has , in the four plus years I've had it in, only changed settings twice. It's programable, so can be set with their magnet machine. One time it changed with an MRI, and the doctors didn't know it needed to be looked at later.Over all, the shunt has been a positive. I had the symptoms of slowed gate, headaches, vision was impaired, memory, and contenance. Much of these are better, but there is continuing trouble with balance, headaches at times, and memory is still poor. I hope things improve for your husband. I said I was older, I'm 58, so got the shunt at 54. Good Luck to you both. Wayne

[LuLuG]

I was born with a dandy walker cyst/hydrocephalus.  I had a VP shunt put in when I was 12, it broke when I was 27 but the doctor couldn't take it out so it sits broken inside my body. But he did perform an operation in which he put two holes in my head to relieve the pressure. I still get headaches but they go away after a half hour from advil. Not like the "shuntaches" I had growing up. I also have twitches in my neck where there is an incision and on my side where the other incision is beside the one in my head. I reside in New York City. The doctors I had are well reknowned.

[Lilmis40]

Has anyone had problems with depression/mood cchanges due to their VP shunt??  Also,has anyone experienced learning difficulties??

[iantheb]

you are never to old i have had shunt all my life im now 40 and i have had so many i have lost count but after all the operation there is more risks of thing going wrong as am now left after my last operation 3yrs ago with cronic (chronic) pain in the back of my head and the right side where the shut was last put if your still in pain get the doc to check out the tube i have found out many time the bottom of the tube get glogged after so many years good luck

[Threewheelmobile]

Hi , If I had known today what I should have known in 1992 when I was diagnosed with a hydrophaelus , I would have gotten advice from my homepathic doctor . He does wonders managing my pain. Right now he is trying to get my kidneys and liver to function better. I am holding all the water in my whole body now as well as my head.
I have no headaches like I had before. He managed to get those under controle with corels.  Fantastic. By the way I have three large body of water in my brain and do not take any kind of pain killer. Only if I cannot stand the pain any more. This usually occurs when I get a flu virus or have bronchitis. This occurs because of this damp climate we live in.

I wish  you all the best.....I have a homepathic that works with electro accupuncter.

[Threewheelmobile]

Hello love Threewheelmobile here,
I know you are scared out of your wits but dont be , try and relax. Now first thing I would do is to go to a homeopathic doctor who works with electrode accupuncture. These people work with correls and get the spinal fluids moving or blockages to unblock.
Should you need a shunt then for all means get one. My shunt problems are not as bad now that I have gone to the homeopathic doctor! I could kiss him. He works wonders. So if you can I would do that now.
xxoo Threewheelmobile

[Threewheelmobile]

It s the build up of fluids in your abdomin (abdomen). I have a huge belly from this . I wish you all the best of luck in world.

God Bless and yes you will figure it out.
Threewheelmobile

[Pattycake333]

My 15 year old son had back to back VP revisions in 2009. Ever siince these procedures, he has intermittent shooting pains in the shunt as well as the tubing area behind his ear.  His neurosurgeon prescribed medrol packs (steroids) but they don't seem to do much in relief.  He has had numerous trips to the ER in which they do the standard CAT scans and MRI shunt series xrays.  Each time they tell us that the shunt is in tact and that the ventricles are unchanged.  Does anyone have any information on what to do at this point?  My son is becoming more and more depressed and frustrated and I am also, not knowing what to do to help him!  Please give me any insight that you might know!!! Thanks so much!!

[Threewheelmobile]

Hi >  Don't , mess with things that are working for you.  Joining the army is the last thing that you should be concerned about when you have a shunt. If the shunt is working the way is should be then dont mess it up. Most of us are not so lucky. We have excruciating headaches. I can not run or even walk quickly without toppling over frontwards. So please my dear trev dont mess it up.
If I could have just one day without feeling the pits I would give anything.

Stay well
Threewheelmobile.

[KO1500]

Pattycake,

Sorry for trouble your son is having! I am 33 with bi-lateral VP shunts ( one on each side). I had my left shunt replaced in April 2011, everything was fine until November, it started with severe pain in each shunt, much like you describe. Then came the projectile vomiting, the fatigue etc...CT scan looked fine, but my N/S relies ONLY on how I feel, and he believed my situation warranted further investigation. Last week I had nuclear shunt study done at the hospital, low an behold, the shunt is obstructed distally ( abdomen). It should take 7 seconds for a shunt to drain, mine takes nearly 15, due to the obstruction.  I believe the " shunt" pain we feel is from a bulild up of pressure, inside the ventricles. If your son has " stiff" ventricles, they will not look sick on a CT scan.  My advice is to ask your son's N/S for this test, it is non invasive, and highly predictive.  I feel very lucky to have my N/S, and wish everyone on here could have the same. Don't give up! Your son is in this for the long haul, this is a chronic, sometimes frustrating situation, but with a team of doctors who care, it can be managed. Also, the hydrocephalus association is a GREAT resource. They will answer questions, and give you referrals. I wish you and your son the best of luck.

[Threewheelmobile]

Hi Rudy ,
If a doctor had said to me that they are only tension headaches I'd run out of the room as quick as my short legs would carry me.
I would strongly advise to get help from another source and that is in alternative medicine. It has helped me tremendously. I havent visited my neurologist since he told me that they did beleive me and insinuated that it was more emotionally caused than it was.
Run . I can only tell you that my pain behind the ear where my shunt is placed has completely dissappeared.

Good luck , God Bless

[jrzmom]

My son who is now 11y/o had his first shunt out in when he was about 6months old...@ the age of 3 he started having headaches, this prolonged until the age of 4 where he went into cardiac rest from there he was in the hospital for 1mth before they realize his shunt malfunction..the did a lumber puncture and had an emergency revision of the shunt..due to the prolonged of that e lost his vision...i went thru the same thing its migrane (migraine), its just a headache. He is 11 now with the same vp shunt since 2006..but i swear if it wasn't for the lumber puncture test he probably wouldnt be here..it so frustrating when the doctors themselves dont know whats going on...it shocks me to see all these stories..am praying for everyone.

[jacquelineschi]

You are very lucky! I had the opposite, A VERY good family practice dr and a horrible neurosurgeon. If was my family practice that DEMANDED that something be done due to my elevated white count. My shunt line came out of my peritoneal cavity and embedded in my muscle. I became severrely infected and yes i had the same symptoms. Stiff neck, headaches, all the above with slurred speech, tremors, etc... Neuro Surgeon said i was WHINING!!!! Went to the ER multiple times and the neuro actually REFUSED transfer to his hospital via ambulance. My family practice saved my life. He fought for me to get treatment.. I had given up and was ready to die at home... Family practice called me at home and told me that he had convinced them and to get my butt up there immediately. Drs temporarily externally placed and drained shunt, while infection was controlled. I was on Vacomiacin for a month via PICC line. Infected and scarred tissue was cut out of my abdomen, Abdomen was completely opened up while my organs where cleaned out. And yes...Couldn't sue due to it took me 2 yrs to speak, walk and talk.. Was told by a lawyer, statute of limitations had exceeded. I changed neurosurgeons and will never go back. Turned out if was a ruptured disc at T7 and T8 that caused spasms so severre that is spit my shunt line out of my abdomen. Who'd a thunk it....

[au24kt]

My name is Pamela, I have had my shunt since April, 2008.  I understand all of the above.  Please write back.  

[Threewheelmobile]

hI SNUGGLEBUG105
mY ADVICE TO ANYONE WITH SHUNT PROBLEMS IS : Go to a homeopathic doctor who works with electodes accupunture. They can measure everything wrong in the body.
Drink Nettle tea . Fresh about a liter to 2 liters to empty the toxins in the body. The kidneys and Liver will have certainly not been able to function properly ! How are the boule movements? If one can not go to the lu properly because the brain just doesn't get the message to empty . This will cause enormous pressure to the brain. There is a middle called Colin clean , I recommend this to all my friends with problems. It is in one word amazing and gives enormous relief.
Two you need some medication from the homeopath to thin out the liquid in the brain so that it is able to pass threw the drain.

My pressure build up enormously behind my right ear. I experienced pinching to the area because the valve could not cope with the amout of fluid . I noticed that when I was sleeping at night that is when my liver and my kidneys went into over drive . I had to get out of bed so much that I could hardly get any sleep.  However , my head and body felt a lot better after it got rid of all the water it was containing. So Nettle tea is a god given middle for me.
Good Luck and God Bless
From Threewheelmobile

[CaysMom]

My daughter had a shunt revision on tuesday.  She is home and is okay when she is laying in bed but as soon as she sits in a chair or upright in anyway-she is in severe pain.  I took her to the ER and they said she is just getting used to the flow but this seems like a load of bull.  Why would it not happen when she stands?  She does not want to move from being propped in the bed so she is not standing much but the pain only occurs when she is sitting.  She is 13 and it is killing me seeing her like this.  They did another cat scan at the ER and said everything looked fine-but then again-they are the ones that did the surgery.  I feel like I am going crazy seeing my child in so much pain.  Did the neck pain ever go away?  

[arimalay]

my daughter has the same pain. i try warm compress on her it seems to work a little which is better than nothing. her tubing gets really tight as well, scary, it looks like its going to come out. try some stretching too, motrin as well. God Bless, dont give up!!!

[JoyLynnsmom]

My daughter was born with hydrocephalous and spina bifida.  She is 27 years old.  A VP shunt was placed at birth.  She had a couple revisions and meningitis before the age of 5 but had no problems for 18 years.  She had the entire shunt replaced when she was 23 with a programmable valve.  She did great for 3 years, delivered a healthy boy vaginally 2 years ago.  We were thrilled.  Last year she had a revision to her shunt around May 1.  In June she started with belly pain.  It took 3 months but was finally diagnosed with a pseudocyst in her abdomen.  She has had 6 revisions since that time, all being due to the distal end of the shunt (scar tissue/lack of absorption).  Last Wed was her last revision.  This time they put in a new valve and replaced the tubing all the way down to the abdomen.  She usually bounces back and feels pretty good for a couple of months until it fails again, but this time she isn't.  I know how you feel about watching your child go through so much pain and discomfort.  She cannot function.  I am searching for a second opinion to see if there is something else that can be done differently to get her life back on track.  I wish you all the best with your child.  I know how frustrating it is.

[gertie571]

I have Hydrocephalus due to prematurity.  I have been shunted since age 4 months when they found it.  I've had a number of revisions (one had come apart). I've been generally unwell since a head injury at 13 and have often have shooting pains,fuzziness and bruised feelings on/ around my shunt.  I know several others who have this intermittently.  Over the years (I'm 40) I have found out a lot.  Having a shunt creates an abnormal state, some are lucky and are problem free some are not.   Until injury at 13 I was well inbetween revisions.  Still I appreciate it keeps me alive.  At the moment I've just had ICP monitoring for a possible blockage. I'm having intermittent blockage symptoms and am not coping with daily living .  This VP is 20 yrs old and I've been told to contact them when I need to , to catch it in the act of playing up.  I have always had support from my consultant, GP and a medical adviser from  SHINE (UK charity - spina bifida, Hydrocephalus).  There is a support group in USA, try them.  Scans aren't always useful, and it sounds like your son has had lots of radiation already.  My consultant uses intracranial pressure monitoring.  I don't know how your country's system works, but please get some support from your US based charity.  I'm fortunate I was born in England and have the NHS and I have no idea how much my hydrocephalus treatment costs but it is always treated as a possible emergency and fully investigated.  If your son's shunt caused problems whilst visiting the UK it would be investigated under the NHS.  Good Luck!

[ninygayle]

You need to sue for medical malpractice. Thats what Im doing

[redhead1964]

I had my first shunt put in October 2010. I am 47 now. I developed IH and was leaking csf from my head into my ustation tubes. Since my shunt I also had to undergo 3 craniotomies and a mastoidectomy to stop the leaking. Right after the 3rd craniotomy my shunt started working funny so my NS shut it off by disconnecting it in my adomin. That lasted about 5 months (during which time the headaches increased). During the time it was shut off I had no pain from the tubing which I did have until it was disconnected. Well in March of this year I went into hydro and had to have a new shunt put in. Now that it is hooked back up the pain in my upper right belly is back to being in pain. Its intermittent but it seems to be around my liver. At times I cant walk. Like today.

The other issue I am having is in my head where the valve is. Unlike the other one I had this one is much more sensitive to the shunt area. I can not bend over or laugh, cough or sneeze without a great deal of pain at the shunt site. I would not call it a headache but more like presure pain which brings on a headache if I do it for any amount of time. I dread getting a cold. Have not had that yet but if it hurt like this, I know it will not be pleasent. I'm not sure what to do about either issue. I thought it would just go away over time but it seems to be getting worse. I wanted to see if others were experiencing the same type of symptoms.

[Threewheelmobile]

Hi , you sound like me.  The only good thing about me is that I didn't have to  go through all the shunt replacements because I was all grown up. I was 32 yrs old by the time they found mine. No fault of the doctors. I just got used to  all those  headaches.  No one at home listened to me at the time or for that matter even now . I have only had two shunts thus far.
I have an electronic shunt don't know the name of it. Didn't care to know at the time and still don't  I just want to know if it was working and that I felt better. It worked for a short period of time and then it slipped when the doctors were adjusting it. It slipped backwards. We started all over again from scratch and still ended up getting terrible head aches and walking like a drunken sailor threw the streets.
How do I manage to servive? I went to a homeopathic physical therapist whom had studied first for a physical therapist.  He studied up on homeopathic medicines and uses tiny correl like tablets.
The first thing he had asked me is what kind of illnesses I had had when I was a child? Not the ordinary illnesses, but something out of the ordinary?
I was surprised that he would know enough already to ask that question?
I had dipttheria when I was around 12 . He gave me medicine to get the left over bacteria from the diptheria .  Then eventually different medicines to help the nerve system recover from all the poisons and left over bacteria still lingering in my blood.
It has been a long long haul but I actually feel normal some days.
I can not walk too fast otherwise I fall frontwards on my face. Just like someone had vcut down  a tree. My hubby yelled out timber once.
I have terrible balancing problems when I stand on ice I slide and fall.
We had very icy streets last winter and of course on the day out we went out for a meal with some friends.

I didn't  get hurt at all. I still think I have a guardian angel looking out for me.

I am sure we all have them.
So I hope your guardian angel will help you find the way.

All my bets are on the homepathic remedies, over here and world wide they are trying to get them banned.
I hope that more an more people will eventually leave the modern doctors and go to a homeopathic doctor to get help.
It has helped me tremendously deal with the pain.
I don"t beleive in pain management the doctors gave me. 4 x  a day 1000 mg parecetamol.  All that did was give me stomach pain. It made me into a zombie the whole day.
More pain leads to more paracetamol.
Homeopathic remedies get to the root of the problem.
Good luck
xx Threewheelmobile

[Threewheelmobile]

Hi ,
I use sunglasses in the house on a sunny day because the light really hurts my eyes. In agreement with wearing sunglasses in or out of the house as it gives your brain the rest it needs. Protect your eyes at all times.
Loud noises as if everything is amplified I have that too. Now I am going deafer. Can't hear some words sometimes. Even when focusing on the conversation. I got my ears tested , they said I need hearing aids but do not know for sure if this will clear up things for me. After all it is the brain not my ears that have been damage. I do not want to spend 1000 -2000 euros for a hearing aid only to discovered it doesn't help.

Anyway I wish you luck.  Wear your sunglasses when you get these horrific headaches and eat a banana when the light flashes are flickering too much. The brain needs potassium at that moment.

[Threewheelmobile]

If I  had known what I know now I wouldn't have put in the VP shunt either. Akthough it was touch and go and no other information was available. I strongly suggest to got see a Ortheomanuela therapist. and to check if your spine is inlinement. I did this and he helped me considerably. He became a Gp first and then took courses in the alternative cures.
Then I found my way to an accupuncturist that works with electrodes not needles that he sticks into the skin.
It looks like a bunch of mumbo jumbo but it gets results that have helped  me so much. Today is a sunny day and I do not have the servers throbbing in my head like I used to. My back pain was corrected by the Ortheomanuella therapist . It is so important that you find someone you can trust.

God Bless

[tondra22]

My husband @ 45 has been diagonsed with mild hydrocephalus.  The first doctor immediatly gives one option which is to put in a shunt.  After reading all of your posts I am sure that I need to get 2nd and 3rd opinion.  His symptoms are memory loss, concentration and vision problems.  No headachs.  His valves are 40% larger than average....so any advise from someone with this condition is welcome.  #unadvised

[Zrybrq]

My sister was born with with spina bifida & hydrosephalaus. She is sensitive to florescent lighting and sometimes a lot of noise, esp if she has a headache.

[Threewheelmobile]

Hi I was reading about you being pregnant, let me first congratulate you on your having a baby, I wish you all the luck and happiness in the world.

Secondly your headaches have subscided because your hormones are working for the baby now. I am so gladd the headaches have subscided.
Bully for you!
Third there are other methods rather than putting  drain in. However, we would never have found out that we had this condition without the Neuroloogs help. They don't beleave in any other methods than placing a shunt.
I am not going to tell you how else we can get cured because no one beleives  me anyway. Everything I tell the physicans is not taking seriously.We all have to find our own way in life to get the best possible cure for ourselves.
I have a shunt with a lot of complications with the fluids not draining with just the drain.
I went to a homeopath whom helped me a great deal.
I still have the shunt in my head but refuse to take another step into the neurologists office.  They have greatly disappointed me in so many ways and for so many times.

My headaches are just when the sun shines now. I take a tablet to help me pee on these days.
I had a problem of falling face first to the ground. I now walk slower, much slower. I don't do too much in a day but regulate my tasks.
Otherwise the pressure builts up in my head.
I try to avoid salt as my body is holding fluids a lot of fluids.
When seeing the doctors they say your holding water but didn't give me any help . Other than telling me to exercise more and to get a healthy food plan.
Worthless advice ever. They still don't beleive me when I said , I fall face first. What was I going to do about that problem?  I said ; gee maybe I'll get a rolater to help keep my balance. He replied with, Yes then everyone can see that there is somethng wrong with you.! What a stupid comment coming from a proffessor.
Anyway I have not been back and hope I never will. When they start listening to the patient maybe then I will go back to a doctor.
You were right that a shunt can not be taken out but that is because it has grown solid in the bone of the skull.

Good luck luv .
May God be with you always.

[Threewheelmobile]

Yes high florenscent light makes the pain in the head worse. Put sunglasses on him. Bright light increases the head aches.

Good Luck and God Bless

[don_m]

I had a hemorrhagic stroke due to hypertension in early 2012. I was taken to a major neurological teaching hospital, so that may have improved the outcome.  The neurosurgeon placed a programmable (Codman Hakim) VP shunt when my CSF refused to regulate its pressure properly.  It's only been in place for eight months now, and I have had no negative experiences with it.  I am blessed to have only minor short-term memory loss.  No problems with numbness, vision, hearing, headaches, or balance.  I have even gotten back on my motorcycle a couple of times (yeah, I know).  I was able to drive and to return to work (as an engineer) three months after the shunt was placed.  there certainy are risks, but I just wanted to let you know that the outcome can be good (so far, anyway).

[Threewheelmobile]

Thank God I;m not alone! I keep telling the neuroligists to send me to the neurosurgeon to get my back treated. They kept on telling me I have no herniated discs...slipped discs.  Went to another hospital to get rediagonist. Yes , they found one of my herniated discs, but they still have not looked into the one remaining, because they refuse to use contrast fluid, which is needed to bring this problem to light.
So , I have turned to the paranormal world. I have found a great deal of relief by these doctors. They have given me homeopathic medicines which clears up so much of the problems. I refuse to go back to the hospital for the annual check ups as it is a waist of time and breath.
I'm  so happy that your family hospital stuck to their guns.
Bully for you.
God Bless and protect you throughout all your struggles.
Thanks for your imput . I appreciate all whom writes to me.

[Threewheelmobile]

Thank you for writing what you had gone threw . I am hopeing that some day  the neurologists will team up with the homeopathic doctors and together come to a solution for this illness.

I am sure that mine started when I was around 12 . I heard a pop in my brain when I layed my head down on the pillow. I also pretty sure that It had something to do with the last injections we had for polio, diptheria, tetanus shots, Something went wrong.
I also hate the games these doctors are playing with me. NOt listening.  End up going to a psyscolists or a shrink to be able to air my problems. Cost wise way too expensive and not worth the bother.
take care luv.

God bless
3

[Threewheelmobile]

Thanks luv ,
I can not sleep unless my head is elevated . Went camping with hubby and we had blow up cussions. Too flat. Almost took my life that time. PUt my motorcycle suit underneath to get the proper elevations needed to survive.
I am sure the doctors have heard this but are too stupid to admit it to their patients.
Be well God Bless
Sorry it took me so long to send you word.
3

[Threewheelmobile]

I have read what you had written in 2011 . You so hit the nail on the head.
Doctors are not being honest with us because they don't know enough about our medical condition to do anything about it.  I said to the doctors when I was last operated on , I feel as if I am a guinea pig. They acted as if they didn't know what the meaning of the words was.

Anyway , I hope all is well with you. I do hope for all of us that some day soon there will be a better way to get cured. Or at best make life more pleasant to live.

Threewheelmobile

[Threewheelmobile]

Hi Pamela,
I read your note and I am sorry that I am so late in replying to it, however I have had such a tremendous response . It is hard to keep up.
How are you doing and do you have any questions laying heavily on your shoulders . Do ask ? I'll see if I can help in any way!

I have had a rough couple of days behind me but it was because of the sun shinning. I just function very slow when the sun comes out.

How are you doing?

Luv Threewheelmobile

[Threewheelmobile]

HI luv,
How did things go?
ON the positive side , the Vp shunt is the only thing that will keep us alive until some genious figures something else out.
Do go to a homeopath to get your symtoms (symptoms) checked by them. They are a better bet than the specialists whom only offer pain killers to take care of the headaches.

Keep your faith in God and let him guide you.
He did this for me and I am certain he will be there for you.
Don't give into your fears. That is the worst thing one can do.

Just go with the flow, and remember we are all different. No one person goes threw all the same things regarding a hydrophaelus. MIne had way too much damage and yet I seem to be able to function more than the doctors can understand.

The reason why they don't understand why I can do so much and manage to keep on smiling is too difficult to comprehend.
Today my brain was not functioning at all fell down on my hands  and knees. I was over joyed with this, because before I would fall head first and hurt my neck.
Al though I don't feel the bruises today , I am sure I will tomorrow

Have a great day luv.
Threewheelmobile

[Threewheelmobile]

Hi.
Have you tried cold or hot gel element on your neck to see if that would help. Try one and then if that doesn't help try the other kind. Or you could even try switching from hot to cold to get the circulation going in your neck.

I had those oh so familiar throbbing headaches when I had my revision of my shunt and I used cold facecloths to easy my headaches. I noticed that when I was in hospital it was far too warm.  So my husband would give me a cold  facecloth. It helped. I even managed the doctors to get them to turn down the heat on that floor.
At home we always sleep in a cool room.
Try it luv you have nothing to lose.  
We alwatys have gel packages in the freezer .

Good Luck and God Bless

[Threewheelmobile]

Each one of us are different regarding the built up of brainfluid. Where it is situated en so forth.
I hear you about diddle daddling around. They held me on a line for over a year before they finally decided to put a shunt in.  The problem was we are adults and our problems are the shunts have to placed trategically to help our problems. The neurosurgeon have a lot to think about before they mess with our brains. Having said that , It would have helpe much more to us if they had told me that they had to develope a shunt that would work for my defect. If they had told me up front , I would have been less concerned and have layed back. The first thing that we should all remember.: Is try to keep calm, i don't know how you ever manage to go to work. I am a housewife.
I find that taking care of my house work is more than I can handle.
It is strange if I tell you this but I always put my faith in God. He is the only one with his angels that I feel are always present , guideing me along.

I also visited a homeopath doctor whom was a great help to easying my pain.
All the doctors suggested was to take a tablet or 2 , 3. I was allowed 4000 mg a day. I  was a zombie all day I could get out of the chair. Or it was from the chair to the bed.

Pain killers are not the answer. The more painkillers I took the more I needed.
I am pain free this morning , I don't know how long it will last. I haven't taken a painkiller in months.
Had to last week ...got the flue.

All my love.  Hugs  Threewheelmobile

[Threewheelmobile]

Hi Enny,

I have had a shunt in my skull since 1991. Of course they can not remove it . It has become embedded in my skull. If push comes to shove they will have to put on right next to it.

It is sad but true but I know that the brain surgeons are not that familiar with this problem. 'They only understand a tiny portion of the brain mattery.
You wouldn't want them to go messing with your pc would you?  Our brain , I call our computer. It is so much more delicate than a pc.

We will have to search for new methods of releiving us from the pain.
I have found relief in homepathic medicines. Which ny the way the doctors in every country are trying to ban.  This is because most of us whom can not find the answer with  our Gps or Neurosurgeons  turn to alternative medicine.
The chinese mush know what they are doing as they have practiced this form of pain relief for over thousands of years.
I put my bets on the alternative medicines and have found it helps tremendously.

Good Luck  God Bless
Threewheelmobile

[Threewheelmobile]

It is malfunctioning and get to a neursurgeon as soon as you can.
You most likely have a blocked drain. Need to have that looked at.

Good luck luv
Threewheelmobile

[Threewheelmobile]

Hi Luv ,
I loved reading your comments.  The difference between most of us when we talk about shunt pain is we were discovered late in life with this problem.
We have huge puddles of water in our brains. It was no treated and therefore has caused so much damage. Any foreign matter introduced to the brain is therefore going to cause the brain to retaliate.

I am so glad that you don't have this problem and keep up the good  work.

Thanks for your blessings. Keep the prayers going!

Luv from Threewheelmobile

[ell1234]

Hello, I have a VP shunt for hydrocephalus, which was diagnosed at age 38 after being treated for several years for what my doctor thought was vertigo and after finally sending me for an MRI realized that I had hydrocephalus.  I had a shunt revision at the age of 44 and they realized I had two lesions, which was most likely the reason I developed hydrocephalus.  During my second surgery I had a stroke because my brain bled and I again had enormous fluid build up. Listen to your doctors and if you don't care for your doctor find a new one you feel comfortable with.  Although shunt surgery may be common and an easier procedure than most surgeries on the brain, it is still very important and must be treated when you develop symptoms.  Although I have some issues due to my last surgery, it saved my life and I have a very productive life raising my children.  There are risks to all surgeries, but I must say I feel so much better after having shunt surgery.  I don't experience floaters which were caused by the pressure in my brain.  I focus better, I am much less irritable, no more vomiting or dizziness.  Please find a neurosurgeon that you are comfortable with and have the surgery if this is indeed your diagnosis, make sure he is reputable and has experience with shunt surgery and do it and improve your life, it is by far the best thing I have done to improve my quality of life.  Not every day is perfect but it is far better than it was prior to having the surgery.  Good luck Ellen

[ell1234]

Hello, I have a VP shunt for hydrocephalus, which was diagnosed at age 38 after being treated for several years for what my doctor thought was vertigo and after finally sending me for an MRI realized that I had hydrocephalus.  I had a shunt revision at the age of 44 and they realized I had two lesions, which was most likely the reason I developed hydrocephalus.  During my second surgery I had a stroke because my brain bled and I again had enormous fluid build up. Listen to your doctors and if you don't care for your doctor find a new one you feel comfortable with.  Although shunt surgery may be common and an easier procedure than most surgeries on the brain, it is still very important and must be treated when you develop symptoms.  Although I have some issues due to my last surgery, it saved my life and I have a very productive life raising my children.  There are risks to all surgeries, but I must say I feel so much better after having shunt surgery.  I don't experience floaters which were caused by the pressure in my brain.  I focus better, I am much less irritable, no more vomiting or dizziness.  Please find a neurosurgeon that you are comfortable with and have the surgery if this is indeed your diagnosis, make sure he is reputable and has experience with shunt surgery and do it and improve your life, it is by far the best thing I have done to improve my quality of life.  Not every day is perfect but it is far better than it was prior to having the surgery.  Good luck Ellen

[bboberg]

Have congenital hydrocephalus; have been having pains on my shunt side for 5-6 days now, but my NS appt is in another 6 days.  Many days are more cloudy than sunny, but sunny days hurt my eyes without wearing sunglasses.  Lying down at first hurts, but also sitting up, for most of the time, also hurts, especially if stressed too much.  I have tried pain management in 2011, but it was not effective enough.  I had a revision in February 2012, but my head feels the same as it did 18 months ago. (as my surgeon warned me).  I was given a different programmable VP shunt type, from a ProGav to a Codman programmable VP shunt, but the pain, I also believe is related to many factors out of my control.  I wish I knew what to do about this, or how to feel better right now!

[hopeful31394]

My daughter has had a adjustable vp shunt for 6 years. 2 revisions in the last 9 months. Does anyone know of neurological group  with more than  one doctor/surgeon that actively works on quality of life issues?

Her doctor now, is supposedly the best in Nor cal but does surgery so much that he has no time to address quality of life. We see him after the emergency room.  Not ideal.

I would move anywhere in the country to be near cutting edge doctors who also address quality of life?
Anyone with suggestions please post!

[BGIRL61]

My daughter died just recently from a lack of duty of care in her shunt management with what we believe is a catalog of systemic failures by her neurosurgeon and the hospital... Our advice to shunt sufferers is to be vigilant about their healthcare and as 3wheelmobile is suggesting - get help from a HOMEOPATH... for pain management is key to a good quality of life and drugs only exacerbates the vicious cycle... For people with BRAIN TUMORS* get help from the BANERJI PROTOCOL (google them)...

IN GOD WE TRUST - IN MAN WE RUST!!!!

[Inpainandtired725]

Hi my name Cristina and I too have a vp shunt for hydrocephalus but I was diagnosed with it when I was 3 weeks old. I went on vacation with my daughter at fl when I was there I had aneixty attack and pain on my shunt area in my head and my adomen is there a possible I might need my shunt revised? I hadn't had a revision since 2009 before I had my daughter which that was in 2011

Please help

[Threewheelmobile]

Thank you very much for your support and helping me battle the health care system. Especially with the Neurologists whom have put themselves on a pedestal. They refuse to send me to a Neurosurgeon to be able to get a proper assessment.  It is almost laughable if it were not that I am in so much pain.
As if the shunt didn't make matters bad enough. The specialists keep playing these mind games with me. I am so sick to death of battling with stupidity.

Then comes along the judges to ban homeopathic remedies from our health care system.  I am so ashamed of this kind of embarassing situation for all the future patients who can not get the proper care.  The  doctors are completely mad when they just perscribe pain medication without suggesting a way better method . It is much less expensive and the medicines that I have been taking actually help directly.
I had suffered from Asthma brochitis, I have been taking two kinds of homeopthic pippetjes of chemicals that the body is lacking at the moment the
brochitis comes to the surface. These two medicine work directly loosening the hard core slime  and clearing the lungs in a matter of minutes. No puffers needed. The doctors over here try one kind of chemical on one side of Holland and on this side a different one entirely. The bronchitis flairs up when it is chilly and very damp weather. I can not tell you what a great relief it is to have homeopathic remedies to turn to.
If the specialists really had our interests at heart, they should suggest other remedies to try. Not hold on to their narrow minded remedies of chemicals.
Charging us for these worthless or useless cures which aren't a cure at all.
For back problems there are alternative  ways to get our  bodies releived from these horrible pain.  Not to mention the deplorable visits to the specialist lying threw their teeth with each visit. It makes the patients angry not to mention pennyless.

[Threewheelmobile]

Hi Luv,
I am sorry to hear about this problem you are having, it sounds all to familiar to me.  My suggestion is to go see a homeopathic doctor or physical therapist.  They have a machine that is called accupunture with electrodes. It is almost painless and you can get more answers that way. I found out that eating potatoes were not good for hydropahelus patient nor is aubergines. They hold fluids in our body. I don't know about you but my body has been holding all its fluids. My head is the worst place with the highest concentration of fluids. However I could not urinate at all or very little , so my right kidney was not working properly nor was my liver. It worked twice as much at night making me need to go to the toilet at night. Hence not getting enough sleep and feeling grumpy.
Good luck and God be with you.

Luv from 3wheelmobile

[nefsite]

I originally had a VP shunt put on the right side of my head at birth due to hydrocephalus. Then at age 6 (1983) I had a shunt revision and it was put on the left side of my head. I have had no problems with it since then. After reading comments I feel I am very fortunate.

[raggadyann337]

I'm a 45 year old female I have had my vp shunt since 1995. My shunt is turned off now. I keep having shunt headaches. My neurosurgeon Dr John D Day is my doctor. He called me today and told me he is taking the shunt out on January 23, 2013. He thinks I have a leak somewhere in the shunt. The only thing I have had revision on this shunt is tubing on top and a programmable valve put in. Its on the left side of my brain. I sure hope this works Dr Day taking it out. Cause I'm tired laying flat for the low pressure.I will let everyone know how I do. Its very rare they take a shunt out. But I'm rare. they still might have put another one in.

[misty_1515]

I also have a vp shunt i get bad head aches and pain on the right side where ther shunt is placed and every time i laugh cough sneeze lift anything yell get stressed it hurts bad feels like my head is going to explode but only on the right side does anyone else have these problems ? i have the vp shunt and a spinal shunt....

[AlabamaGirl1980]

I have hydrocephalus and had my shunt put in 4 years ago. I have had no problems with the shunt itself but I do get headaches still. But if I drink a little alcohol it goes away. The docs will not remove a shunt because you will die if you don't have it. I almost died before I had my shunt put in. I quit breathing twice so I'm glad I have my shunt. :-)... It's keeping me alive