Re:Has anyone experienced hydrocephalus and had to consider shunt place

[Guest guest]

Hi , I certainly have experienced Hydrocephelus and have also been treated with both a shunt and Cellcept with Prednisone. I first had hydrocephelus about 2 yrs ago and nobody knew why. I had a hole quaterised in my 3rd ventricle to relieve the pressure and they put a reservoir in my head to measure any future pressure problems. Unfortunately the surgery wasnt successful and the hydrocephelus reoccurred. So... they put in a VP shunt which was fantastic! At that stage they didn't know I had Neuroscarcoidosis. Several months later some calcifications appeared on my brain in an MRI which was of concern to my Neurosurgeon, so he was keeping a check on them. They disappeared a few months later and everything seemed to be OK and I only needed to visit my Neurosurgeon every six months for a routine checkup. Not long after, I started to lose my hearing and stupidly I didn't think it was

related to my brain!!! After visiting ear, nose, throat and hearing specialists and being diagnosed with hereditory hearing loss, I bought $2000 worth of hearing aids that did nothing but amplify the sounds I could already hear. Not very helpful as a Primary school teacher! Despite this, my husband and I were supposed to be moving to live and work overseas in the UAE. (What was I thinking????) So, I thought I'd have a checkup with my neurosurgeon before leaving. As soon as I walked through his door and he saw that my hearing was gone he freaked out and told me there was no way I was going overseas. He sent me for an MRI and sure enough my hearing nerves, brain and spine were covered in granulomas. I also developed Bells Palsey after I had the MRI. I was admitted to hospital to be tested for NS (and Melanoma because in the middle of all this I had Melanoma removed from my neck). During this time my shunt blocked and I had a new one put in

again. I was dosed up on a megadose of Prednisone (the bain of my life!!) and all seemed to be well. The Bells Palsey dissappeared and I could hear again. Then......a couple of months later I started getting symptoms of hydrocephelus. The tubing in my stomach from the shunt had popped out. (I'm sure it was because the prednisone made me so fat that my jeans were too tight causing the tubing to pop out!) Anyway, they fixed that up and admitted me to hospital again. I completely lose my mind and my memory when my shunt blocks. Apparently I was ripping out my lumbar drain and trying to go home and I have no recollection of it - Thank God! (literally) However, I wasn't able to escape that hospital visit without my shunt blocking again. So......they revised it yet again. That was about a year ago now and I haven't had any problems since. Although I have had a couple of scares wondering if I could have a

blocked shunt - but it turned out to just be tiredness from the medication. As for the Prednisone/Cellcept..... (the saga continues...). My neurosurgeon referred me to an endocrynologist and an immunologist to deal with my medication. My immunologist put me on Cellcept to bring down my Prednisone dose to a lower level. However, the Cellcept didn't work for me at all. My hearing loss returned and an MRI a couple of months ago showed that the granulomas were bigger than ever. I have since been put on massive doses of Prednisone and have monthly IV infusions of Cyclophosamide (nasty stuff). I look like a stuffed pig and my bones ache badly but the granulomas have gone again and I can hear. Hopefully the Cyclophosamide will work and replace the Prednisone. I'm sorry for the long winded reply, however, its hard to narrow it down in a few sentences. I have got to say that despite my shunt blockages, I'm glad that I

have had it put in. Hydrocephelus is so painful and despite the risk of my shunt blocking, it is less likely than my chances of having hydrocephelus again. Once the shunt is in there, it does it's work and you don't know about it. If I was given the choice again to have the shunt put in, I would. As for the Cellcept, I hope that it works for you. It wasn't successful for me, but it was worth the try. Best wishes with your decision. Simone

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[Guest guest]

Hi , I certainly have experienced Hydrocephelus and have also been treated with both a shunt and Cellcept with Prednisone. I first had hydrocephelus about 2 yrs ago and nobody knew why. I had a hole quaterised in my 3rd ventricle to relieve the pressure and they put a reservoir in my head to measure any future pressure problems. Unfortunately the surgery wasnt successful and the hydrocephelus reoccurred. So... they put in a VP shunt which was fantastic! At that stage they didn't know I had Neuroscarcoidosis. Several months later some calcifications appeared on my brain in an MRI which was of concern to my Neurosurgeon, so he was keeping a check on them. They disappeared a few months later and everything seemed to be OK and I only needed to visit my Neurosurgeon every six months for a routine checkup. Not long after, I started to lose my hearing and stupidly I didn't think it was

related to my brain!!! After visiting ear, nose, throat and hearing specialists and being diagnosed with hereditory hearing loss, I bought $2000 worth of hearing aids that did nothing but amplify the sounds I could already hear. Not very helpful as a Primary school teacher! Despite this, my husband and I were supposed to be moving to live and work overseas in the UAE. (What was I thinking????) So, I thought I'd have a checkup with my neurosurgeon before leaving. As soon as I walked through his door and he saw that my hearing was gone he freaked out and told me there was no way I was going overseas. He sent me for an MRI and sure enough my hearing nerves, brain and spine were covered in granulomas. I also developed Bells Palsey after I had the MRI. I was admitted to hospital to be tested for NS (and Melanoma because in the middle of all this I had Melanoma removed from my neck). During this time my shunt blocked and I had a new one put in

again. I was dosed up on a megadose of Prednisone (the bain of my life!!) and all seemed to be well. The Bells Palsey dissappeared and I could hear again. Then......a couple of months later I started getting symptoms of hydrocephelus. The tubing in my stomach from the shunt had popped out. (I'm sure it was because the prednisone made me so fat that my jeans were too tight causing the tubing to pop out!) Anyway, they fixed that up and admitted me to hospital again. I completely lose my mind and my memory when my shunt blocks. Apparently I was ripping out my lumbar drain and trying to go home and I have no recollection of it - Thank God! (literally) However, I wasn't able to escape that hospital visit without my shunt blocking again. So......they revised it yet again. That was about a year ago now and I haven't had any problems since. Although I have had a couple of scares wondering if I could have a

blocked shunt - but it turned out to just be tiredness from the medication. As for the Prednisone/Cellcept..... (the saga continues...). My neurosurgeon referred me to an endocrynologist and an immunologist to deal with my medication. My immunologist put me on Cellcept to bring down my Prednisone dose to a lower level. However, the Cellcept didn't work for me at all. My hearing loss returned and an MRI a couple of months ago showed that the granulomas were bigger than ever. I have since been put on massive doses of Prednisone and have monthly IV infusions of Cyclophosamide (nasty stuff). I look like a stuffed pig and my bones ache badly but the granulomas have gone again and I can hear. Hopefully the Cyclophosamide will work and replace the Prednisone. I'm sorry for the long winded reply, however, its hard to narrow it down in a few sentences. I have got to say that despite my shunt blockages, I'm glad that I

have had it put in. Hydrocephelus is so painful and despite the risk of my shunt blocking, it is less likely than my chances of having hydrocephelus again. Once the shunt is in there, it does it's work and you don't know about it. If I was given the choice again to have the shunt put in, I would. As for the Cellcept, I hope that it works for you. It wasn't successful for me, but it was worth the try. Best wishes with your decision. Simone

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