I HAD A LP SHUNT PUT IN ONE MONTH AGO AND I STILL AM NOT BACK TO WORK YET IM ABLE TO STAND FOR ABOUT 3 HRS NOW BUT I FIND IT HARDER TO SIT I GET SEVERE HEADACHES IM WONDERING WHEN THIS WILL START TO WORK? I ALSO HAD THE VALVE PUT IN SO I WOULDNT HAVE OVER DRAINAGE PROBLEMS. AFTER TALKING TO OTHER PEOPLE WITH THIS SAME PROBLEM I WONDER WHY I WASNT GIVEN DIAMOXX I HEARD THAT HAS HELPED ALOT OF PEOPLE, BUT THEN AGAIN THEY WERE TREATING MY HEADACHES LIKE MIGRAINES FOR OVER 2 YRS BUT AFTER THE LUMBAR PUNCTURE IT SHOWED MY PRESSURES HIGH 32 OR 35 I HAVE SEEN HIGHER NEEDLESS TO SAY IM NOT VERY HAPPY WITH MY PROGRESS. AND I WANT IT OUT. I WOULD TAKE THE HEADACHES I HAD BEFORE ANYDAY COMPARED TO THE ONES I HAVE NOW AT LEAST THOSE WERE FUNCTIONABLE.IF ANYONES HAS SOME ENCOURAGING WORDS TO HELP ME PLEASE LET ME KNOW THANK YOU.
I was diagnosed with b.i.h. in 2004. I had many many lumbar punctures through the yrs but my vision became severely impaired so i was referred to a surgeon a few months ago. I had a lp peritoneum shunt put in 3 wks ago with a valve in my lower back. i spent 6 days in hospital as they had to tweak my drainage and alter the setting on the valve. It is now set at 2. My eyes are improving already and so long as i drink plenty of fluids during the day the headaches stay away. The only drawback is every day when i get out of bed i am in alot of pain in my right leg and i cannot lean my back against anything as the valve sticks out a bit and it is uncomfortable. I get twinges in my side but am getting used to it too.
Guest wrote:
April 16 2011 I woke up with a headache and my neck was stiff and sore that I couldnt even turn it. Day 4 into my headache I experienced vision changes so I called my family dr who ordered a ct-scan which came back normal, before leaving the hospital he gave me 2 shots of toridol and sent me home to relax, this took the edge off the headache but did nothing for my neck. Day 6 I still had vision changes so I dropped my kids off at school and went to my eye dr, who dialated my eyes and sent me directly to an eye specialist. The eye specialist diagnosed me with Pseudo-Tumor Cerebri and sent me directly to a neurologist who confirmed what the eye specialist said. From the neurologist I went and had a spinal tap done and found my opening pressure to be 48, once they drained my excess spinal fluid my neck felt much better. The neurologist put me on 2000 mgs of diamox each day to get release the pressure in my eyes and advised if this didnt work I could lose my vision. On May 23 2011 my boyfriend and I drove to Omaha, NE which is an 8 hour drive to see a neuro-optomologist to see if there was anything he could assist me. He ordered me to stay in Omaha and he would perform surgery that week, so on May 27 I had a Bi-Lateral Optic Nerve Sheath Fenestration surgery done to drain my optic nerves. I woke up from surgery with both eyes matted shut and 10 stitches in each eyeball, all I cared about is if I could still see since the surgery was risky. Much to my delight when I was able to get my eyes open I could still see! Over the next several weeks my vision started to improve and went from 20/275 to 20/25 and the eye dr is saying it should get better, but I still have some vision trouble, I still have images in my vision but there is still some pressure around my optic nerves. The neurologist is advising that I may need to have a Lumbar Shunt to help drain the remaining fluid and keep the pressure down to a normal level. I see the neurologist again on Aug 15 so we will see what they have to say about the shunt, but I am thinking it is going to have to be a GO because I am starting to here the swooshing noise from the fluid building up. I was advised that if I could lost my weight that this would go away completely, which annoys me when people say that, they make it sound like they know what its like to be overweight and think it should just come off overnight. Well I got news for those people, I didnt put the weight on overnight and its not coming off overnight!! I have lost 30 lbs since my diagnoses though and continue to struggle with losing the remaining weight.
April 16 2011 I woke up with a headache and my neck was stiff and sore that I couldnt even turn it. Day 4 into my headache I experienced vision changes so I called my family dr who ordered a ct-scan which came back normal, before leaving the hospital he gave me 2 shots of toridol and sent me home to relax, this took the edge off the headache but did nothing for my neck. Day 6 I still had vision changes so I dropped my kids off at school and went to my eye dr, who dialated my eyes and sent me directly to an eye specialist. The eye specialist diagnosed me with Pseudo-Tumor Cerebri and sent me directly to a neurologist who confirmed what the eye specialist said. From the neurologist I went and had a spinal tap done and found my opening pressure to be 48, once they drained my excess spinal fluid my neck felt much better. The neurologist put me on 2000 mgs of diamox each day to get release the pressure in my eyes and advised if this didnt work I could lose my vision. On May 23 2011 my boyfriend and I drove to Omaha, NE which is an 8 hour drive to see a neuro-optomologist to see if there was anything he could assist me. He ordered me to stay in Omaha and he would perform surgery that week, so on May 27 I had a Bi-Lateral Optic Nerve Sheath Fenestration surgery done to drain my optic nerves. I woke up from surgery with both eyes matted shut and 10 stitches in each eyeball, all I cared about is if I could still see since the surgery was risky. Much to my delight when I was able to get my eyes open I could still see! Over the next several weeks my vision started to improve and went from 20/275 to 20/25 and the eye dr is saying it should get better, but I still have some vision trouble, I still have images in my vision but there is still some pressure around my optic nerves. The neurologist is advising that I may need to have a Lumbar Shunt to help drain the remaining fluid and keep the pressure down to a normal level. I see the neurologist again on Aug 15 so we will see what they have to say about the shunt, but I am thinking it is going to have to be a GO because I am starting to here the swooshing noise from the fluid building up. I was advised that if I could lost my weight that this would go away completely, which annoys me when people say that, they make it sound like they know what its like to be overweight and think it should just come off overnight. Well I got news for those people, I didnt put the weight on overnight and its not coming off overnight!! I have lost 30 lbs since my diagnoses though and continue to struggle with losing the remaining weight.
Can't believe it's been 4 & half years since I wrote this. Things have got better since having my 2nd shunt. I still suffer with having z headache all the time and every month/2 months my head feels as if it's going to pop off my shoulders which lasts for a week then goes back to how it is.
Just wanted to say thanks to those who contacted me. Here is a link to my group about BIH on Facebook if you want to talk to others https://www.facebook.com/groups/8200839129/
Just wanted to say thanks to those who contacted me. Here is a link to my group about BIH on Facebook if you want to talk to others https://www.facebook.com/groups/8200839129/
I was on Topamax and it has bad side affects and my feet would tingLe so bad I would fall in shower and what not, I'm having a lp shunt done Tuesday cause nothing worked for me!!! Wish me luck
I am trying to learn as much as I can about IH. I have contacted the foundation in Portland Or. to find out as much as I can. I need input from others who have delt with this problem.
I had a VP shunt fitted in March 2013. It seemed to do the trick although I can't say I was anywhere near back to normality. I couldn't exercise and I still felt the odd bit of pressure. As at today the shunt is still working ok but it would appear I am still producing excess fluid causing my brain to atrophy. While I am fine and appear normal what are the next steps?
I was diagnosed several years ago with pseudotumor cerebri. After tying the medical approach-Diamox I opted for the vp shunt with the codman programmable. I have undergone 2 distal revisions since then and pretty much have not had any problems with the exception of it becoming unprogrammed and thats a easy fix. In the last 2 weeks I have started having severe headaches, nauses, unsteady gait. The headaches have been continuous only the severity changes. I had put on 40 lbs on seroquel which I am now off of and trying to loose that weight. Over the course of 5 days I had 2 ER visits, NS visit and Family practice visit. My family Dr. treated my BP 186-212/95-102 and put me on Diamox. I hate that drug for its side effects but it's better than a 10+ headache daily. I was referred to a New neurosurgeon whom I saw on Wed. and this is what he had to say. You need to lose weight, wee've done our part with the surgery and its time for you to do your part! So he is sending me to weight managment which I have no problem with. He refused to change the shunt setting to help me out and told me to stay on the Diamox and he would see me in 6 months. So in answer to the question of weight gain it does matter and he told me from now on anytime I was put on a medication to ask if it had weight gaining properties. Hopes this helps and I hope you have a better neurosurgeon that what I had. I found myself walking to my car thinking he could have changed the shunt but would not and he would see me in 6 months. I will not be going back there.
I am left with the choice of getting a LB Shunt, 33 182 lbs. wife, mommy, who has been sick with bih for about four years I am on Diamox, Topamax, and Laxis. I have had LP's to lower the fluid pressure and it just keeps going up. I would like to hear from people that have had this done and if you have any advice or regrets.
Hi my name is Keshia I want to know how long is the recovery time for lp shunt
What are the treatments available for 30mm ostium secundum asd left to right shunt? What is this condition anyway? Is it life-threatening?
I have had a VP shunt for several years. All I do is throwing up, having a bloated upper belly, and right side pain when breathing or moving. They say nothing is wrong?! What could it be?