Hello my name is Rhonda and Im 34 years old. I was diagnosed with Pseudotumor cerebri 4 years ago. I've done the spinal tap every year and topamax twice a day every day for the last 4 years plus tried every prescribed migraine medication to help with the migraines and its just not working. Ive have between 10 to 15 ER visits each year to get shots to help with my migraines as well cause nothing seems to help. I just had my second set of MRI's and I back to discuss a few options including a shunt. I'm not really wanting the shunt because almost every story on here is not very positive. Theres alot of shunts being revised and broken and being replaced and I dont know the difference between an LP shunt and a VP shunt. Do you have any advise as to anything else that might help or even ease my mind about the shunts? I have children at home and can't nor dont want lose time with them due to headaches or spending to much time in the hospital cause of shunt malfunction.
Hello! I have had 14 shunt revisions, and I have had both a LP shunt and VP shunt. A LP shunt is where the tube drains fluid from your lower back to your abdomen. and a VP shunt is goes from your head to your abdomen. If I could give one piece of advice I would say don't get a shunt unless it is a LAST RESORT!! in other words, unless your head is in unimaginable pain ( pain you have never felt before) and uncontrollable vomiting and you begin loosing your vision then don't get a shunt. I am only 27, and have spent most of my life in hospitals.
I'm in a similar situation as you. I've had so many lumbar punctures that I don't even have a count anymore. Mine is from a CSF leak which was coming from my skull base into my sinuses. I've had the leak since 2006. I've had the first surgery to patch it about 1 1/2 years ago. But I blew the patch because my pressure shot up after the surgery.
The way I understand it is that because I've had a low pressure situation for so many years that I've sort of adapted to this. So my pressure goes up when they patch the leak. I just had a second surgery on 7/1/10 to patch this up. But my intracranial pressure was elevated. I was put onto Diamox (A med to lower the pressure). Unfortunately I am allergic to the Diamox, because it is a sulfa med. I had to take each dose with two benadryls to keep the itching at bay. Now it's been over a month since my last surgery so my neurosurgeon let me stop taking the Diamox.
So, if this patch does not hold the next step is a VP shunt. I personally would be open to having a shunt, if it were to help my 4 year old headache. My neurosurgeon has said that although the procedure is not without risk, but that it is pretty routine. Shunts now-a-days are pretty high tech and would allow them to fine tune my intracranial pressure. So, like you I am thinking about it.
So that's kind of what I know right now. My head pain is pretty well controlled on narcotics.
Have you tried pain management?
What about Diamox?
Sorry that you find yourself in this situation....believe me I understand.
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