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My daughter has been diagnosed with benign intracranial hypertension. I was shocked when I heard. It is rare condition. She complained on sight problem, so I took her to optician, after he examined her he referred her to neurologist. She has been complaining on headaches, nausea, dizziness, but I thought that is something less serious. They claim that she has to have lumbar peritoneal (LP) shunt. I am desperate, what does it mean?

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Well in case of intracranial hypertension, benign too, abnormality in absorption or excess production is present of cerebrospinal fluid (CSF); leading to a build-up of the fluid in the brain. Some people need the CSF diverted by means of surgical inserted shunt and lumbar peritoneal (LP) shunt is shunt of choice. It has catheter placed into a spine. This catheter is connected to another catheter which drains into the abdomen. It is more often in practice for child to undergo frequent shunt revision and may need peritoneal shunt in addition to, instead of the LP shunt.
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Hi

I was diagnosed with Benign Intracranial Hypertension over a year ago now, I under went many many lumbar punctures to reduce the pressure within the cranium (the volume inside the skull), and to establish what pressure the spinal fluid was.

I was also given a number of diuretic drugs to try and prevent as much fluid building up. However, only when this failed and i could no longer prevent the pressure building up using medical intervention did they consider surgical intervention (LP Shunt).

I had my shunt put in, in september 2005, the operation does not last very long an hour or a little more. I was in hospital a little more than 1 1/2 weeks but that was due to the fact that I do not react well to anaesthetics. However, i had my stitches removed before leaving hospital, and approximatly 2 weeks post op. i was able to walk around and do light daily tasks. Within a month of the shunt being put in i was almost back to my old pre- BIH self. If your daughter does have to have a shunt, it will certainly help her to go back to her normal self, i do more now than i have been able to for a long time!!!!!!

Shunts can last up to 5/6 years and whilst they are working, life is very good! However, make sure if a shunt is inserted that a horizontal / vertical valve is put in as well as the catheter tube, this prevents too much fluid draining when you stand up, which has problems in that there is too little fluid around the brain.

I hope that your daughter gets better soon. I find swimming helps me to relax and sooth my pains.

:-D
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Hi im 48 yrs old, 11 years ago had a very large Accoustic Neuromma secessfully removed, although life changing I addapted, Oct 2006 I took ill yet again, after having lumber puncher and serveral of them to detarmine what the level of fluid, it was high and not reducing in level, at that stage i was advised to have the LP shunt inserted, obviously I had no option as I was just about bed ridden and sleeping almot 24 hrs a day, but now I am battling to have what the doctors said I would have many more of, good DAYS, at my last MRI it was noted that the possibly of over shunting could be the cause of still feeling so ill, when the op was performed it was decided by the neurosurgeon to set the level at 9, is this low, I have been advised that increasing it, could not be the answer so no gaurantees whatsoever have been given to me, so at this stage I feel extremely depressed and really do not know who to turn to for some confident/ganarantte from my specialists

thanking you and pray you could give me some advise
regards
Susan :'(
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I was diagnosed with pseudo tumor in my late twenties and had a lumbar peritineal shunt placed in 1989, after having a pressure of 575 an over 52 lumbar punctures in less than a year, cushings syndrome from the 80 mg of prednisone and the other horrible side effects that go along with steroid treatment. I would have to disagree that shunts last only 5-6 years as up until recently I have had no problems with the shunt being functional. Unfortunately at 46 my symptoms are returning with a vengeance. I would strongley suggests in lp's fail an medications fail that a shunt is your best option, beats losing your eyesight and the constant excruitiating and debilitating headaches this condition causes. I lost 5 years of my life prior to being diagnosed, was told I was emotionally unstable, the headaches were due to depression and emotional stress an I just needed counseling to cope. I was ready to commit suicide at that point until a wonderful man named Dr. Thomas Gulick finally to me seriously and took the time to explore the real problem.
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hi i have had the condition for 2 years now but i am the unlucky one i waited to long to see a doctor and it has reduced my sight. a lp is when they take spinnle fluid from the spine it is uncomfortable this measures the pressure in the brain and it does bring relefe from the symptoms

if u need to ask anything else then u can email me on _[removed]_ my name is sarah
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I have had B.I.H since i was 15. Mine was diagnosed after a trip to the opticians. I suffered for months with really bad headaches. I was convinced i had a brain tumor it was that bad. I had a series of lumbar punctures which didnt work. Then i had an LP shunt fitted. this was fantastic it give me my life back. I had this shunt for 5 years then all of sudden my headaches returned worse than ever. I was taken to casualty where they did a scan and found my shunt had come out of its position and worked its way up into my head nd is now just floating around. I was told i would need to have another one, and they would just leave the old one until it starts causing problems. I was told that this was extremely rare, and I am 1 of only 7 people in the world who shunt has ended up in head!! they even used me as part of a study for a medical journal.
I have now had the 2nd shunt in for a little over 5 years and my headaches are back again. they think this one may be blocked and Im waiting to see the consultant again so they can do tests.
As someone else said the shunts are great when they work but i unfortunatley know all too well the problems they cause when they dont work.
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The reason why I am writing is because I wanted to speak to others who suffer with the same condition as myself. I have Benign Intracranial Hypotension aka B.I.H. I was diagnosed with it in Sept 07, my symtons only started in the August, my vision going really bad, me having more headaches and sickness which I just thought were my migraines giving me havoc.

So I went to the optitions to be told that my eyes were so severe that I need A&E Eye Clinic. I thought that I was the only one to ever have this type of condition, I had never heard of it before and still probably would not of heard of it if I did not have it. It is nice to see that I am not alone and others know exactly what I am going through.

I thought my head was going to pop and that my eye balls were going to shoot out of my head with the amount of pressure I had in my cranium. I know my 1st LP pressure was 49, the 2nd 50 then the other 3 I just did not want to know. I ended up being in hospital for a month and had an LP Shunt fitted.

I have just come out of hospital (again) last night, unfortunately my shunt has got blocked and that's only within a few months. I did get told that due to my weight it does not help towards the condition, which really annoyed me.

My vision is very damaged, my optic nerve was so swollen the Doctors could just about see where it was and I had a lot of haemorrhages. I also had a black floater in both eyes more so the right.

I would love to be able to speak to others who have gone or is going through having B.I.H. My email address is _[removed]_, be lovely to hear from you.

Don't be scared you are not alone, like I have learnt :D .
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I was diagnosed with psuedo tumor in Jan of 2007, Feb. 1, 2008 I had a LP shunt put in. I was home for a week and had to be put back in on Feb.13th due to a knot in my right side and on the 20th they had to replace my shunt. I am now having to go on april 25th and have that removed due to a large knot on my back and they are going to put the shunt in my brain. I am 49 yrs old and if I have any trouble with the one in my brain I will have it removed and no more put in. The drain tube will go to an artery in my neck and the fluid will pump back through my heart. I hope your daughter has great success with the shunt and I will say a pray for her.
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ive just returned home from hosptal after have a shunt fitted. im 23 years old. Its really not that bad. Im quite sore and have to take it easy for a while but im getting there. I havent had any problems and my eyesight has started to improve. It's not perfect but it's a lot better than before my operation. The operation takes about 1.5hours but is worth it. I was in hospital 5 days after my shunt but i'm making good progress. Go for it, it'll really help your daughter and it's honestly not that bad.
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I was diognosed with B.I.H when I was 12 and had a shunt fitted when I was around 16 - one of the first to have a lumber shunt fitted I think. I have had no problems to date and I was formally discharged from hospital around 4 years ago and have not heard from them since. My shunt is now 7 years old and reading these posts has worried me! Should I go back and attempt to get the shunt examined to check for blockages etc? No one ever mentioned that it may have a 'shelf life' and need to be replaced when it was first fitted. What do you recommend? I am also worried about any potential impact on my sight if I do not do this. I was lucky in that, eventhough my condition went undetected for a while, my sight was in no way damaged. Should I seek advice from an optician?

Emily
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Hello - My 25 year old daughter just had her LP shunt inserted a few days ago. Her recovery is not going that well. Today she has severe pain in her head when she stands up...that's one of the signs that too much fluid is being drained through her shunt. She was first diagnoised with psuedotumor cerebri four years ago. Her pressure would build up so rapidly that she would often have seizures. The past two months have been extremely rough - four lp's and 3 hospitilizations. We finally decided on the shunt. Now, it appears like something else is going wrong. The thing with my daughter though is that if something can go wrong, it usually does with her. I'm sure that after her pressures are leveled off, then she will lead a much better more comfortable life.
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I have been suffering migraines now for several years (at least the last 4 that I can remember!)... and I have finally been seeing a Neurologist now for the last several months. We think that we have nailed down that it is Idiopathic Intracranial Hypertension. The doctor sent me for a lumber puncture and my CSF levels wer 34cmH20, and normal levels are suppose to be 10cmH20 (I think). After the lumber puncture I spent 4 days in hospital with intense migraines and unable to walk due to the pain in my back. I have since been on topamax, and the doctor has now put me on fluid tablets. I have lost 13kg to try and help with the migraines but unfortunately none of this is working. The doctor is now talking about wanting to do surgery and Im really scared! Does any one know of any other options? The medication that I am on is also giving me side effects such as feet tingles, eye twitches, face tingles and all sorts of other fun stuff! Any advice would be great!
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After having PTC for 12 years, trying all the medicinal remedies, more Lumbar punctures than I can count, I had a LP shunt placed on 3 days ago. I feel horrible when I sit/stand up. The symptoms go away when I lie back down. I could really use some advice as to if this is normal. Has this happened to anyone else? How long does has it taken everyone else to feel normal?
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Where does Dr. Gulick practice medicine? I assume he is a Neurosurgeon.
I've heard good things about this Dr. I understand he has a website. Does anyone have that info?

Thanks for any help you can give me on this.
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