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.