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]

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.

[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

[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!!!!

[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!

[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!

[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