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.
For the last 1.5 years I've been experiencing pain directly on my shunt and along the tubing in my neck down to my collar bone. I tried pain management and they tried 3 nerve blocks, 2 of them were injected directly into my spine like an epidural. None of them brought any relief to my pain. Their thinking behind the nerve blocks was that my occipital nerve had been severed during my 1st revision. I tried taking Lyrica and Neurontin for about 6 months to try and help with the pain along the shunt and the only result I got was gaining 25 pounds.
I even had my neuro surgeon completely remove my shunt from the front right of my head and place a new one on the back left side and run all new tubing. After about 3-4 weeks the pain along the shunt returned but even worse this time.
I saw an allergist to see if I was allergic to the shunt because I had the shunt from my right side to test. He couldn't prove that I was allergic to it but he told me that after my first revision my ns should have done a pathology test on the protein that had clogged my shunt because if I was allergic to the material the type of cells around the catheter would of been very specific. Of course my ns hadn't sent the old catheter off for a pathology report because according to him "why would I do that? I never do!"
I had another revision about a month and a half ago. They changed my shunt to a programmable shunt because with my old one I had developed double vision, which hasn't gone away yet with the new shunt, but the pain along the shunt has gotten worse than ever.
I have been trying to convince my ns to remove the residual tissue from my brain tumor so I could have my shunt removed, but he says no neuro surgeon will do this because after 3 years I am shunt dependent by now and since my cancer is gone there is no need to remove the tumor. I've had 3 revisions in 1 year so I am scared to death that I will have multiple revisions throughout my lifetime. I found an article online about a man in his twenties that has had 27 revisions and the dr's discovered that he was allergic to the silicone in his shunt. They solved his problem by changing his shunt to a polyurethane one.
Does anyone have any experience with a silicone allergy or a polyurethane shunt,
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