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.

[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.