Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is nor can I recommend the next step for you. However I will try to provide you with some useful information.
In general, some swelling and pain around a surgical site is expected, but with significant pain, swelling and redness, and particularly if there is fever, an infection would need to be ruled out. If there is significant swelling, redness, pain, fever, contact your physician immediately. Shunt revisions sometimes have an increased risk of infection, and it is better to err on the side of caution than worry about having too many evaluations.
If you are having head pains that are different from your initial headaches, possibel causes include shunt under-draining: that there is still too much fluid/pressure. This would best be assessed with a shunt tap or a lumbar puncture that measures the fluid pressure, or adjustment of the shunt to allow it to drain more, to see if the headaches improve. Another possible cause is that the shunt is over-draining, leading to too low of a pressure that can also lead to headaches. The headaches related to over-draining classically improve when the person lies down and gets worse when the person sits or stands. The third possible cause is that in addition to IIH, you have an additional headache disorder such as a migraine disorder. With migraines being so common, it would not be surprising that you happened to have 2 problems that lead to headache. However, this diagnosis is only made when the other two causes are excluded.
An MRV, which is like an MRI but for the veins of the head, is sometimes indicated in patients with IIH to ensure the cause is not narrowing of the veins in the head, particularly when the response to shunting is not optimal.
Tinnitus, or ringing in the ears, occurs with IIH and can be of various qualities, including a swishing sound. In this case, this is related to the CSF flow most often. Sometimes this improves with shunt adjustments.
Continued follow-up with your physicians is recommended.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck
Hi melique. I have IIH and a VP shunt since Dec 08.Altho I have had a lot of problems since, I have had none like yours. It sounds like you have an infection in your shunt some where. You need to get back to the hospital ASAP. Dont ever feel you are complaining too much.You cant. If something is wrong, it needs to be fixed and they cant do that if you dont tell them. I understand how you feel, its all ways something isnt it? But you need to get tough and look after yourself properly.
The sounds you are hearing is the pressure (csf) moving around.I would say it sounds like a swossing noise to me. It drives me crazy some days! It feels like I am under water. It the same with your nose.Its the pressure.
Do you have papillodeama? You mentioned that you might have lost your eye sight. I have it in both eyes. Drop me a line if you want to have a chat.Cath278