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Hi I thank you for taking the time respond, The neurologist that was over her case since the beginning told me that the mengitius that caused the hydro caused a number of pockets of fluid, the shunt would only reach the 1 or 2 main ones and that there are a number of pockets that will never be reached by the shunt and time will tell what will happen to the others, he also told me that her brain is continuing to grow and develop which is encouraging, unfortunately due to cuts etc he has retired and no one else has fully replaced him and im concerned that no one is keeping an eye on it, I requested her records and have been going through them as best I can, my daughter was never seen by a neurosurgeon and im trying to get one, I suppose my main question is these pockets of fluid or cysts, can her brain continuing to grow put pressure on these? can they be removed or do they just stay there? if they could be removed is there a chance they could improve elements of her development and am I right to keep trying to get a neurosurgeon to review her or just wait for a new neurologist? not to sure on difference. Its just hard when you loose a great support network that new and understood the case, he always said it was a very unusual case one in his 23 yrs he had never really seen, I think he was referring to the level of protein (14.4g) and infection, but also the scans and all the divisions of fluid. He did request a 2nd opinion from the top peads neurosurgeon however before he could see her she needed an emergency op and it never happened, im just trying to see what he might have done next? sorry for all the questions im just not sure how much or little info you need, I know they cant all be answered its mainly guidence on what or where to go or do next and for you to maybe say what is or is not important for me to focus on.
It was 2 years ago, I have asked for another but was told she would be in pain if anything wrong but im not so sure as it never happened like that the last time? p.s i dont mind waiting for answer if you are busy and also understand and appreciate the time you take to answer i will pay extra for that time (might not be a fortune but what ever i can afford!!)