My name is Mark. I am 50 years of age. I was diagnosed roughly ten years ago with IH. Initially we tried a plethora of drugs but ultimately I started taking high dosages of Diamox. I take eleven 250mg tabs per day; 4 in the morning, 3 in the afternoon, and 3 in the evening. In the beginning an LP would get me by for six months. Over time I needed them more regularly; every 4 months, every 3 months, etc. Now they only manage my pressure in weeks.

I very rarely show signs of papilledema. My pressure is usually at the lower end of high. However I suffer pain on a daily basis. It always starts behind my (R) eye (even though the neuroopthamologist says that my left eye is the worst) and usually becomes painful behind both eyes. The pain at times is moderate but quite often severe. I probably have about two days pain free per month. I take a litany of pain meds and rarely get relief.

My neurologist has been urging me to have shunt surgery and firmly believes that I would benefit. I trust him immensely and sought him out ten years ago because of his reputation with managing headaches. He referred me to a nice neurosurgeon with whom I was quite comfortable with and I have been told by others that know him that he is an excellent surgeon. He proposes using a programmable VP shunt.

Right now I'm in a quandary as the LPs are not sustaining and I am scared of this procedure and its effects. When you Google "Intracranial Hypertension" or "VP shunt" the results often are horror stories posted on You Tube. My neurologist did provide me one case study done in Ireland that looked at IH patients that had shunt surgery. They studied other procedures as well as the VP shunt such as LP shunt, and a ventricular shunt that drained into the pericardium.

I cannot believe that it took me nearly ten years to find this site. I am in dire need of hearing from people that have had the VP shunt and to hear about the result.

Kindest regards

Mark Haimowitz

Hi Mark,
I have a lp shunt. My case is a bit different than the "usual" IIH, but, I too found that I was getting relief each time I had a LP. It is "logical" that if you do, the longer lasting thing to do is to get a shunt installed. It is up to you and your Docs to decided if it should be lumbar or ventricle. I was too chicken to go for the brain surgery as first try and my Neurosurgeon felt comfortable trying the lumbar first. So we did. So far so good. My body is still getting used to it, so I am experiencing fluctuations. Overall, I feel MUCH better!

In addition to this wonderful website, have you looked at: http://www.iihsupport.org/index.php
They are from across the pond, so much of their references are different, but you can read the experiences of many others who have had surgeries there.

Hi Mark, welcome to the group!!!

Meidcation and LP's are so hard on your body I'm not sure how you've survived this long w/o a shunt..good for you! I don't tolerated meds very well, so I've had a lumbar shunt for about 10 years now. We're looking into options for an upgrade at this point, but I don't have any personal experience w/ the VP. I would suggest going to ihrfoundation.org. It's a research foundation for IH and they have a lot of info re: IH and treatments.

I'm sure other members will be able to provide you w/ personal experiences regarding the VP shunt..good luck!