Hello.I was diagnosised with IIH in July this yr. My opening pressure was 460 and I have papilloedema in both eyes. After trying Diomoax and steriod treatment with no success it was decieded that I should have a VP shunt fitted. This was done on Nov 25th and seemed to be a success.Headaches and nausea gone. After the 10th day post-op, I started to feel unwell and all the symptoms returned. The headache, which is worse now than before surgery, starts 1 hour after getting up in the morning and gradually gets worse as the day progresses. I also have terrible pain in my eyes again as well as nausea, dizziness, loss of balence,poor vision. I have had my eyes checked by a Ophthalmologist, ( last week) and there is no improvment in the paps. I have also had an xray and a CAT scan without contrast and have been told that the shunt is in the correct postion and is working. I have been told to give it time to settle and take painkillers.
Im am not happy with this result and am very nervous that somet thing is wrong. Should I be more patient and give it more time? I have nt got a fever but feel like I did pre-op, only worse. I would very much appreciate some help with this . Thanking you, Cath278
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. However I will try to provide you with some useful information.
In patients with IIH who are treated with VP shunts, there are 3 possible causes for the headaches. The first is that the shunt is 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.
It is very important to follow-up with your eye doctor to ensure your visual fields are not being impaired due to the papilledema, because chronic pressure on the optic nerves can lead to permanent vision loss.
Weight loss is strongly recommended in patients with IIH.
An MRV, which is like an MRI but for the veins of the head, is sometimes indiciated in patients with IIH to ensure the cause is not narrowing of the veins in the head.
Again, I can not comment on whether or not there is a problem with your shunt without being able to examine you. However, I strongly recommend continued follow-up with your neurosurgeon and eye doctor. If you have not been evaluated by a headache specialist, this may be beneficial to you as well.
Thank you for using the forum I hope you find this information useful, good luck.
Dear Dr. Chahine, thank you very much for your reply. I started to take the painkillers which were prescibed for me and feel alot better. The pain was getting the better of me and making me afraid. I think the shunt is under-draining.My neuro said that the operation was more complicated than first thought it would be as my ventricles had closed. I think the shunt that they used might not be able for the high pressure that I seem to have (46+).Im making this judgement based on the fact that the paps have not improved but the shunt is working. Maybe it is all about my body coming to terms with the shunt and then the fine balence will restored.
Prior to having IIH, I did suffer from migraine, in fact still do as I have had one attack already. I am able to distinguish between the two which is a help.
I agree with you about the importance of having my eyes seen to by a specialist and to that end will be seing my Ophthalmologist again in two weeks. He is a bit concerened about the paps and my ocular pressure which is raised. I was very interesed to read about the MRV test ,which so far have not had done. It is some thing I will discuss with my neuro when we met again.
Once again , thank you for your excellent reply. Some times you need to see it all put together for it to make sense. IIH is a very difficult illness with so many variables and any help to understand it better is wonderful. Thanking you, Cath278
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