hi i had an lp shunt fiteed in 2003 3 years after being diagnosed with this condition im due in addenbrookes hospital in cambridge to have it removed as its draining off too much fluid an leaving me with extreamly painfull headaches esp wen i shout , cough , sneeze or even laugh load an wen i stand up. an some times get them for no reason i have 3 sons aged 6,3 and 2 and im 23 yrs old. if theres any1 thats had the lp shunt and its gone wrong or any 1 with any reply would be greatfull. i dont know any 1 who has this condition and my family dont understan how painfull it is or how it affects daily life. thank
shelly x
shelly x
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hello! My best friend had lp shunt placed when anything else didn’t help her and her symptoms became so much worse. I think that her biggest problem were headaches she couldn’t get rid of especially when she was approaching her period.
We did dieting together and she did manage to lose some weight, however, it didn’t seem to help much.
When she had her lp shunt, she developed a weird swelling around her wound in the back, it was frightening. It has been present for like a month. She was given some kinds of drugs, can’t remember which and I guess they helped because the swelling went down.
My friend tells me she still has some headaches especially when she is approaching periods but otherwise she’s been doing fine.
What will happen in your case now when having that one out? Will you have anotherone put?
We did dieting together and she did manage to lose some weight, however, it didn’t seem to help much.
When she had her lp shunt, she developed a weird swelling around her wound in the back, it was frightening. It has been present for like a month. She was given some kinds of drugs, can’t remember which and I guess they helped because the swelling went down.
My friend tells me she still has some headaches especially when she is approaching periods but otherwise she’s been doing fine.
What will happen in your case now when having that one out? Will you have anotherone put?
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Shelly,
I understand that your family has no idea what your going through. I had my first lp shunt put in in 2000, it broke in two places in 2004 they put a new one in although they could not get all of the broken one out. I later had to have the shunt removed from liver and I have had severe head aches that are undescribale.
Good luck with everything I honestly feel your pain. I hope one day your family can maybe read up on what you have ans have a better understanding. Hang in there.
T-
I understand that your family has no idea what your going through. I had my first lp shunt put in in 2000, it broke in two places in 2004 they put a new one in although they could not get all of the broken one out. I later had to have the shunt removed from liver and I have had severe head aches that are undescribale.
Good luck with everything I honestly feel your pain. I hope one day your family can maybe read up on what you have ans have a better understanding. Hang in there.
T-
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Hello Shelly
Hi i understand fully what u are going throw. my husband really dont understand how much this really does change your life either, and stop you from doing what i call normal things. i had this Lp shunt fitted in october 2005 after my Vp shunt in my brain when wrong it burst my bowel giving me menigitis. im also 23 and i have a 2 year old daughter. ive had BIH since 2004 my daughter was 3 mths at the time. since having this Lp shunt fitted in october 2005 i have been getting a lot of low presure headache. Every moning i woke up with a thumping head its horrible i have to lay down to ease it a bit. Thats the only think that works but as soon as i move its thumping as bad as every again. i know this isnt a high presure headache as the pain isnt the same. i also have to take to extra stong paracetamoles every moning then im not to bad for a while. Thats how i get through my days. I also like u get them when i shout when i stand up when i move even when i play with my daughter. it is so hard not having anyone to talk to that really no the pain u are going though and how it really affects us it really is it trully is the worst pain in the world. hope u get on ok Kerry %-)
Hi i understand fully what u are going throw. my husband really dont understand how much this really does change your life either, and stop you from doing what i call normal things. i had this Lp shunt fitted in october 2005 after my Vp shunt in my brain when wrong it burst my bowel giving me menigitis. im also 23 and i have a 2 year old daughter. ive had BIH since 2004 my daughter was 3 mths at the time. since having this Lp shunt fitted in october 2005 i have been getting a lot of low presure headache. Every moning i woke up with a thumping head its horrible i have to lay down to ease it a bit. Thats the only think that works but as soon as i move its thumping as bad as every again. i know this isnt a high presure headache as the pain isnt the same. i also have to take to extra stong paracetamoles every moning then im not to bad for a while. Thats how i get through my days. I also like u get them when i shout when i stand up when i move even when i play with my daughter. it is so hard not having anyone to talk to that really no the pain u are going though and how it really affects us it really is it trully is the worst pain in the world. hope u get on ok Kerry %-)
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i have already given birth to one child before i was diagnosed with BIH and i have now a LP shunt insitu. i had a few complications with my first pregnancy and was wondering if there is any one out there or some web page that i can get some more information from?????
sbryce
sbryce
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hi i to have had a shunt for the past 5 years with no problems at all but then last year i had an emergency gal bladder removal since then the pain has been so bad the tube that runs down from my head to my stomach is always swollen and a large lump were the other part of the shunt is has formedmy eyes always feel like they are buldging and to top it all of i cant seem to get an appointment with my neurosurgeon i was wondering has anyone else went through similar experiences
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Hello ...It is Friday the 5th of January and my daughter has just been diagnosed with BICH ..as he mother it was scary.. and im a nurse but felt helpless as I watched her waite for a diagnosis...the good news was it is not a brain tumor....I know for myself I will do every thing I can to help her with her children and her quality of life ...she is so young (25) to have to handle this...she has many people who love her and we will all support and learn what we can to help her have the best life she can.....i wish you all the best ...I know this is not easy to live with .....vonnie
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hii was diagnosed with bih 4 yrs ago. i was 19 and had recently given birth to my son. when he was about 4 mnth i started to get these incredibly painful headaches! after persistant trips to the hosdpital i was finally diagnosed with bih! they tried a series of lumbar punctures and then some medication which did not help the pressure to come down. 3 months after i was diagnosed on my 20th birthday i was fitted with an lp shunt! it took me about a yr for my pressure to settle itself down.however now when i exert any sort of pressure within my body, ie cough, laugh ,shout etc i feel like i have been shot in the head, this passes after a min or so. i have since been back to see my nurologist who says its something i just have to put up with! nice!!! i am starting to get a bit worried now cos im approaching the 5th yr of havin a shunt and i have read numerous sites where people begin to have problems after 5 yrs with a shunt! i would be interested to here from anyone who has passed the 5 yrs and without any problems!! take care all youy sufferers out there! x
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Hi everyone, just came across this site as my consultant wants me to have a shunt fitted and i needed advice and knowledge. Im only 22 with a 9month old son. I understand what everyone says about how much this can disrupt your life, iv been in hospital 4 times since october, and have my sister stay with me regularly. If anyone else needs to chat or anything email me n hopefully support each other. Donna x
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Hi
Im 17 yrs old and i am being fitted for a shunt on the 6th of march i have seen everyking of doc out there dealy with this. i have psuedotumor cebrir. but all i can say is get it done anything can be better then going in to get alot of lp's done right and it takes up time with this hopefully its only a 1 time thing so i would say go for it that is what im having to do and then hopefully i will go back to the old me!! :o
Im 17 yrs old and i am being fitted for a shunt on the 6th of march i have seen everyking of doc out there dealy with this. i have psuedotumor cebrir. but all i can say is get it done anything can be better then going in to get alot of lp's done right and it takes up time with this hopefully its only a 1 time thing so i would say go for it that is what im having to do and then hopefully i will go back to the old me!! :o
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I'M NOT SURE IF THIS IS THE SAME THING THAT ALL OF YOU ARE EXPERIENCING BUT I DEFINITELY WANT EVERYONE WHO HAS A SHUNT TO HEAR THIS. MY DAUGHTER WAS DIAGNOSED WITH A BRAIN TUMOR WHEN SHE WAS 7 IN 2000. THE DOCTOR'S REMOVED IT AND PUT IN A SHUNT. SHE WAS DOING GREAT UNTIL JUST LAST YEAR. SHE WAS 13. SHE HAD TO HAVE THE SHUNT VALVE REPLACED. FROM THAT TIME ON SHE SUFFERED WITH HORRIBLE HEADACHES. THE DOCTORS DID CT SCANS AND ASSURED US IT WAS NOT HER SHUNT. FINALLY IN MARCH, SHE HAD A SEVERE HEADACHE WITH VOMITING. I TOOK HER TO THE EMERGENCY AND THOUGHT FOR SURE THEY WOULD FIGURE OUT WHAT WAS WRONG. I HAD BEEN READING ONLINE ABOUT SHUNTS OVERDRAINING. AFTER THE DOCTOR COULD NOT FIND ANYTHING WRONG I BROUGHT THIS UP. OF COURSE HE'S A GENIUS AND I'M AN id**t. HE TOLD ME MY DAUGHTER'S ILLNESS WAS ALL IN HER MIND. SHE JUST WANTS ATTENTION BECAUSE SHE'S 13. THEY WANTED TO DO A PSYCHE CONSULT. THEY THOUGHT I MADE HER BELIEVE SHE WAS SICK. WE TOOK HER OUT OF THAT HOSPITAL AND WENT TO DALLAS CHILDREN'S HOSPITAL. THE NEUROSURGEON THERE NEW EXACTLY WHAT WAS WRONG. THE SHUNT WAS OVERDRAINING. AND GUESS WHAT, NO SURGERY WAS NEEDED. THE DOCTOR PUT AN ABDOMINAL BAND AROUND HER STOMACH. SHE HAD TO LAY DOWN WITH THAT ON FOR 2 DAYS THEN HE WANTED US BACK IN HIS OFFICE TO SEE WHAT HAPPENED. IT WORKED. HER HEADACHES GOT BETTER SLOWLY. FIRST SHE WORE IT ALL THE TIME, THEN JUST DURING THE DAY, THEN BY JULY 2006, SHE DIDN'T NEED IT AT ALL. SHE HASN'T NEEDED IT SINCE. SHE'S 14 AND DOING GREAT.
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hi i had LP shunt fitted on 2nd july for BIH i have severe back pain my head hurts when i sneeze or raise my voice also not able to wear any of my clothes my stomach swells as soon as i need the toilet i have pain around the area of my cut in my stomach and it feels numb hoping this is all part of healing and i will return to normal at some point not feeling to good at the moment look forward to hearing from u if u have same problems supposed to be going on holidsy to cyprus in just over a week not really looking forward to it at the moment
sue :-( :-(
sue :-( :-(
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I just received an vp shunt last week and so far so good. Previous to the vp shunt I was given an lp (lumbar perentineal) shunt.. basically at the base of my spine and draining extra csf into my abdominal cavity. It malfuntioned more than once and it became a tug of war trying to find a phyisician that would fix another physicians mistakes... but our prayers were finally answered!! Of caourse with any shunt there are multiple concerns and possible malfuntions etc... but I'm trying to stay positive. Atleast its better than the constant headaches, memory loss, and potential to go blind. I would share more of the horror story of the multiple malfunctions.. but still considering a malpractice suit... so need to not say much until that is done.
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hi my name is Debbie i have a lp shunt. i havehad this lp shunt in for 7 years i have had no problems besides the headaches which are minor compared to what they were. this all started back in 2000 when i started to get headaches and my eye sight was going. i went to opthamologist and then sent me to a neurologist who took numeroius tests and diagnosed me with psueotumor cerebri. they did 3 spinal taps then finally decided to do the lp shunt. exactly one week later i had a seizur then ever since then i had small seizures and 1 stroke. it has been 7 years with out complications.
july 2007 my 24 year old daughter was diagnosed with the same thing. this is not herediatary from what the doctors tell us. The sympotoms started with the eye sight going. she just had optic nerve sheath penitration surgery which is suppost to double the chances of getting her eye sight back. she is also getting the lp shunt put in a week from tomorrow. she also has 3 daughters ages 1 through 3. this has been a troubleing time for us due to both of us going through this.
july 2007 my 24 year old daughter was diagnosed with the same thing. this is not herediatary from what the doctors tell us. The sympotoms started with the eye sight going. she just had optic nerve sheath penitration surgery which is suppost to double the chances of getting her eye sight back. she is also getting the lp shunt put in a week from tomorrow. she also has 3 daughters ages 1 through 3. this has been a troubleing time for us due to both of us going through this.
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