shunt/valve pain
 

My hubby had his 2nd revision end of october and is now complaining of pain in his head specifically where the valve is. His neurosurgeon is a joke and completely arrogant in his part of this. I need to know if anyone has anything on this for directio ...they keep dismissing this and not helping him...thanks

Ok my husband has an appt set up with a neurologist in a few weeks to discuss the above problem. The neorosurgeon's pa is suggesting suboccipital nostalgia...does anyone have a site i can go to or any info on this i am hitting walls with figuring out why he has pain. A reply would be greatly appreciated...thanks

Shunt pain
 

Just be glad you don't live in Hawaii. First the Doctors here told me I had Parkinson's disease and gave me medication that made me insane, suicidal, homicidal and delusional. I lost my job of 12 years, my home, many relationships I had and I got arrested and spent 12 days in jail. I begged to be given a brain scan for 18 months and finally when they did it the doc called me and said "stop those meds! you dont have Parkinson's you have hydrocephalus." You would think that would be the end of the nightmare but it was just starting. The doctors here told me things lke "You don't get headaches from Hydrocephalus" (this was a nuerosurgeon??!!) and "the (migrating) catheter can't cause pain or preforations...it never happens". I have had my V-P shunt 7 months since 7-22-11. I have had 4 surgeries for the migrating catheter, the doctors continue to smirk at me and mumble about pain medications and addiction. The doctors have been so terrorized by the DEA into refusing medication I have to just get by on one or two hours of sleep a night and stabbing pains every time I take a deep breath or worse, sneeze or cough. The latest plan is a V-A shunt next week. I can hear the doctor now telling me "Your not feeling what you're feeling" or "This doesn't hurt...uh.. that's not what you're feeling...are you sure your not addicted to the pain meds???"

you can look at my post on this site. I agree with you ,I too experience pain where the surgeon went into my skull and brain to excise the tumor. This seems to be exasperated by sudden changes in barometric pressure and temperature,ie changes in weather. I wonder if this seems familiar?

Pain
 

I am so sorry....I too have had 3 revisions on my LP within a month and had my complaints dismissed. Finally, they took it out and they did a VA and it seems to be working. So I hope there's hope for you. But I get so angry at doctor's bedside manner....one of my recent ones told me "I was a baby, and that babies have this surgery all the time and don't need pain meds!" I told her I'd like to see her sliced open 4 times in a month and tell me that afterward---it's different when the shoe is on the other foot. I was so upset with my last neurosurgeon that I decided to speak to what's called a "Patient Advocate". Didn't know they existed. But boy I was glad I did-- Boy did his attitude changed fast! Started getting personalized attention, and much better treatment! Got the pain meds I needed....just for the first few days, and I felt much better (was allergic to most other pain meds). I hope things go well for you. If I've learned anything from my experience, it is that I am so thankful for websites like this and IIH, do your own research because doctors DON'T know it all, and YOU are your own ADVOCATE! The squeaky wheel get's heard so to speak! Good luck!