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.

[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

[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

[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 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]

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.
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