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.

[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]

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

[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.

[ninygayle]

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

[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!

[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.