Fine tuning in Pseudotumor Cerebri is very sensitive. At this stage the neurodoctor is blind as symptoms are vague headaches and psychiatric. I donot know any accepted objective test to help. Radiology has no role in this stage except confirming the adjustment.
Suppose you adjusted a patient, and next day he returned back to you very angry saying: "Yesterday adjustment is horrible". Surely you will calm him down explaining to him that we cannot judge an adjustment after 1 day. " You are now adapting to the new adjustment. We have to wait for weeks to 1 or 2 months to judge" you will say.
In case he returned back after your recommended time telling you I am uncomfortable; How will then you decide to go little more up or little more down?
Thanks Dear Seifollah. My own recommendation which we talked about before, which was to monitor facial muscle tensions to prove or disprove a consistent relation in other similar patients.
Another suggestion which I thought of: is fMRI can help? but it would be expensive.
A third idea is to monitor sleep in sleep labs to find out if waves during sleep are sensitive enough to changes in CSF or not.
Regular clinical testing and regular MRI neurodoctors are currently doing are clearly not sensitive at this stage.
I do not have any experience about fMRI. Now, I am thinking about all aspects of that project for starting or not starting
Dear Omer, generally other researchers focus to researches and they less pay attention to the application of the results of these researches for the patients same you.
Dear Seifollah,
I think they shouldnot. At same time I am sympathetic with them as they cannot see the symptoms. Passed through the experience, the only way to convince them is to achieve an objective measure. fMRI is an idea and I have no idea about it like you. I knew about its importance when a researcher told me in a discussion that it shows different patterns in different patients of IH inspite of same pathology.
Our point now is to concentrate on facial muscles behavior in IH patients.
Dear Seifollah,
I am thankful for your consideration of this project: to accept or to refuse it will depend on few important points from my opinion:
1) Is there a real need of such a project? and I am claiming now if there is no need why then no body came in and answered my simple and direct question! To help you to recognize that it is a real research point, I am referring you to a video in which a courageous girl is telling her hydrocephalus story and who passed through 17 operations!
https://youtu.be/ychPdyf6Ajk
I am recognizing very well that her problem is clearly different from my point. Nonethless the story reflects that a good shunt is vital in hydrocephalus. Here I have to express my admiration of this courageous girl and her family. As well I have to express my admiration of her doctors who sincerely and very intelligently and skillfully managed her.
2) My point related to shunt is: a search for an objective sensitive measure to get the final outcome. If there are convincing of such postoperative measures, then why nobody mentioned it.
3) I am not denying the amount and the importance of the going on very active hydrocephalus research. My point is explained in my question. We can not control BP without a sphygmomanomter and similarly diabetes. Hydrocephalus can not be controlled by a CSF range between 5 and 25. It needs to be controlled by the specific patient number. So we have to have a reliable and sensitive indicator. Electromechanical shunt is not only difficult and very expensive, but also it does not define the patient specific needs for his or her cure.
4) You will not be able to start without recruiting patients through neurodoctors and neurophysiologists. Sponsors and support is a vital need for all our current researches.
My best regards,
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