I was diagnosed with pseudotumor cerebri a couple of months ago. After countless visits to the emergency room and doctor's office, apparently my pressure is now too low. The the lumbar shunt is working too well. I am having daily chronic headaches, lightheadedness, and dizziness as well as nausea. The headaches get better sometimes when I lie down but at times, I get no relief. They are debilitating and life altering. My neurologist has no idea what to do and is currently checking with my neurosurgeon to see what if anything can be done. If they remove the shunt, I will go blind because I cannot tolerate daimox and the lasik was not working. Any suggestions or ideas?
It does seem temporally related to the shunt placement .Low pressure can also cause headache, which are usually worse on standing and better on lying, and with hydration and caffeine. Some shunts have a programmable valve (for example the MEDOS shunt) so the amount of shunting can be adjusted without another procedure . . Please discuss this possibility with the neurologist and neurosurgeon . Hope this helps you . Take care and regards !
Hi lundy 101 and welcome! Im sorry to hear you are having so much trouble.I am having the opposite problem to you. My Vp shunt is not draing enought. Last lumber pucture in May showed op was 30.Way too high for someone with a functioning shunt.My neuros next plan is to put in a second VP shunt. Have you considered a VP shunt? They usually are more sucessful than a LP shunt. I also have papillodema, so I cant wait around either or I will lose my eye sight. So far, all my syptoms have returned and there has been no improvement in the paps but I am a bad case study! If it can go wrong...it will! You must always have a sense of humour with this illness. Im sure someone will come along and give you better advice but you can always drop me a line for a chat.Best wishes, Cath278
Thanks every one for all your suggestions. I am waiting to hear from neurologist once she confers with my neurosurgeon. The caffeine is not working. Also, I don't always get relief from lying down. So I guess I will take it one day at a time.
Update - I had another surgery to modify my shunt and place a resevor on it, well I am still having headaches. Went and had an MRA done now I have a bulging C4 and C5 discs and am waiting to see my neurosurgeon. Just don't don't know what to do bout these crazy and debilitating headaches. Feels like I'm going insane.
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