_{I have had headaches before and worse after surgery
low pressure headaches and lost hearing in my right ear}


So since 12/24/11 after my lumbar shunt placement on 12/21/11 I have had horrible low pressure headaches and lost hearing in my right ear. I have been in and out of hospitals with no resolution in sight. I have been told by all doctors who have seen me that my shunt valve needs to be changed and no one does anything about it. On 01/09/12 I had a episode where I had slurred speech, tingling hands and feet and vomiting. Went to ER and they couldn't figure out why. Yesterday at 2:30 am I had the same episode and again was told that they didn't know why but they suspected that my shunt needed to be changed. So here I am at yet another drs office to try and see if this doctor will be the one who steps up to help me. :(

Hi Karen,

I am so glad you have checked in again. I was wondering how you are doing. I had an lp shunt installed Nov. 1st and am not so sure about mine either. I was wondering if I was having low or high pressure bouts, but, like you, I think it is the low pressure. I had been getting daily headaches, dizziness, more than "usual" difficulty talking and feel the best first thing in the morning. My shunt has a programmable valve. My Neurosurgeon said that I need to adjust the amount of Diuretics I take. Has anyone mentioned that to you?
Does your shunt have a programmable valve? If you don't, I wonder if that is what you may need. I hope your docs figure out soon!

Hi Wylee,

Hope you are well. Unfortunately my shunt is not programmable.:( I learned that this weekend it's the kind you have to go in and manually adjust. So since the second opinion doctors don't want to help unless they can start from diagnosing to medication I have to go back to the original surgeon and make him help me.

Wow Karen, that really sucks. I wish I knew what to tell you, but I am at a loss. I feel for you, gal.

Are you taking any measures to help change your fluid pressure? Maybe having less caffeine, drink more water, increase exercise, that kind of stuff to try to boost your pressure (all the stuff they say to NOT do when you have IIH)? I have cut back on my Diamox (under Doctor supervision) and it seems to be helping me with my low pressure symptoms.

I try to drink more fluids not so much caffeine because I don't like to but nothing helps. After my first neuro episode the doc took me off diamox for good and so I have not been on it for three weeks now. I just thinks its funny that even the docs in the Er know that the shunt is the problem but no one wants to do anything about it.

I wonder if it might be an idea to ask your Neuro's about maybe checking the pressure in the shunt, especially as this has been going on for sometime now, and as you say the ER Doctors are saying it is the shunt that is causing the problem.

I would go back to your Neurosurgeon with all the information you have, and also tell him what you have done to try and help yourself. Whether it's manually programmeable or not, you can not be left in pain and discomfort like this, because the shunt is supposed to alleviate that, and not make things worse. It isn't a satisfactory duty of care to you, and it defeats the purpose of why you had the shunt in the first place.

Be firm yet polite to your Doctor and tell him you are not prepared to suffer any longer, and would like him to investigate what is going on with the shunt and put right whatever problem there is. I have found this article which I think you will find very helpful. The Wise Patient's Guide to Being an Empowered Patient

Please let me know if it helps and keep us posted.

Heidi

Thank you very much Heidi I will definitely keep you posted thx for your help. Both of you.