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.
Glad to hear something is being done.Keep in touch and let us know how you get on,ok? Cath.
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.
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
Hi,
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 u may want to check out the Dysautonomia (Autonomic Dysfunction) forum here on MedHelp.....there r other members that can share info and support on this issue.
Good luck
"selma"