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Shunt problems causing headaches etc

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Unread 10-05-2010, 12:39 AM   #1
ian richard
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Default Shunt problems causing headaches etc

I WONDER HOW MANY PEOPLE OUT THERE SUFFER ON GOING PROBLEMS WITH FAULTY SHUNTS I HAD A MEDTRONIC STRATA VALVE ADJUSTMENT BY MAGNET THAT KEPT LOSING ITS SETTING AFTER 13 TIMES. HAVE HAD IT REMOVED NOW NO PROBLEMS WITH HEADACHES NAUSEA ETC SINCE REMOVAL 3 MONTHS AGO, CAN ANYONE SUGGEST HOW I CAN START UP A GROUP TO GET AN IDEA OF HOW MUCH OF A PROBLEM THIS IS. WOULD LOVE TOO HEAR FROM OTHERS OUT THERE. THE MAKERS SAY IT CAN'T HAPPEN I HAVE KEPT CLEAR OF ANY MAGNETIC SOURCES. I HAVE HAD NO HELP FROM MY N.S OR MEDTRONIC REGARDING THIS PROBLEM. CAN ANYONE HELP
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Unread 05-18-2011, 04:23 PM   #2
Betty Kelly
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Help Medtronic Strata Valve issues for NPH

Quote:
Originally Posted by ian richard View Post
I WONDER HOW MANY PEOPLE OUT THERE SUFFER ON GOING PROBLEMS WITH FAULTY SHUNTS I HAD A MEDTRONIC STRATA VALVE ADJUSTMENT BY MAGNET THAT KEPT LOSING ITS SETTING AFTER 13 TIMES. HAVE HAD IT REMOVED NOW NO PROBLEMS WITH HEADACHES NAUSEA ETC SINCE REMOVAL 3 MONTHS AGO, CAN ANYONE SUGGEST HOW I CAN START UP A GROUP TO GET AN IDEA OF HOW MUCH OF A PROBLEM THIS IS. WOULD LOVE TOO HEAR FROM OTHERS OUT THERE. THE MAKERS SAY IT CAN'T HAPPEN I HAVE KEPT CLEAR OF ANY MAGNETIC SOURCES. I HAVE HAD NO HELP FROM MY N.S OR MEDTRONIC REGARDING THIS PROBLEM. CAN ANYONE HELP
5-18-2011 I agree. There must be more people who have had issues with this medically popular valve...me for two! I also note there is a MAUDE who reported their experience and adverse event report, etc. Their problems resolved after their n.S. replace the Medtronic with an Integra, etc. I have also been given the run-around about issues with this valve. It is not what it's cracked up to be from an adult functional standpoint IMO. Positional headaches are likely due to "overdrainage". Been there done that.
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Unread 05-26-2011, 09:35 PM   #3
DigiM4x
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I have a Strata valve currently and it has caused more issues than i can count. I have bad pressure when i change positions like lying down to standing up or vise versa. Sneezing, coughing, even pooping. I am in terrible pain and can't find a neuro surgeon in Kansas City with my insurance coverage that will touch me.
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Unread 05-30-2011, 05:21 PM   #4
jessie1977
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Hi all ...first lemme say I'm new here
I too have a adjustable shunt I have had it since 09 and it seems like o have more headaches then not
I dunno what the problem is but every time .I get a ct scan they say my ventricals are enlarged but they never adjust the pressure or even check it
My head is pounding right now as I type this
My balance is off and blurred vision ...sometime I feel like someone should decapitate me
Just so I don't have to deal with this anymore ..I have had just about 20 or so surgeries on my head ...in 09 they had to revise it approximately 5 times
In 01 15 times half the time I can't even be a father to my 2yr old son
This isn't fair to him he didn't ask to be here ..I feel like a piece of crap
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Unread 06-10-2011, 11:25 AM   #5
lalahecky
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Exclamation Please help me!!!

I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
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Unread 06-20-2011, 09:23 PM   #6
hydrotexan26
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Default New to group

Hi everyone! I'm new to this group. Just looking for some advice. I've had Hydrocephalus since birth and my most recent shunt revision was in 1997. I have a VP shunt so reading about all the new programmable shunts is interesting. I've been having some symptoms over the past 2 weeks and they are leading up to a shunt malfunction I'm afraid. My dr isn't getting in any hurry about doing anything to fix it though.

I looking forward to talking with everyone about this and hope to offer any advice to those that need it or would just like to talk.

Hydrotexan26
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Unread 06-22-2011, 12:33 AM   #7
res5562965
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Quote:
Originally Posted by DigiM4x View Post
I have a Strata valve currently and it has caused more issues than i can count. I have bad pressure when i change positions like lying down to standing up or vise versa. Sneezing, coughing, even pooping. I am in terrible pain and can't find a neuro surgeon in Kansas City with my insurance coverage that will touch me.
I finally got a correct diagnosis 11/2010 after living with constant severe pressure pain in my head for over one year. I had many symptons one year prior to the pain in my head: constantly sleepy, hearing a clicking noise in my ear, numbness of face and head, confusion, mood swings, problems with walking and balance. I was diagnosed with Chiari I Malformation and Arnold's Chiari. Chiari will show up on a MRI if read correctly. After my Chiari diagnosis 11/2010, I had a MRI study of the spinal fluid in my head. That is when I was diagnosed a few days later with Arnold's Chiari. I had to immediately have a VP shunt put in my brain that allows the spinal fluid to flow to my abdomen. That gave me immediate relief from the pressure pain in my head. However, it did not get rid of the pressure pain in my head when I sneezed, coughed, gagged, or laughed. In Feb. 2011 I had Chiari Decompression surgery to make the opening at the base of my brain larger. I also had to have some verterbrae removed to relieve the "brain tonsils" from being herniated through the small opening at the base of my skull which was causing the remaining pressure pain. This is a congenital condition and the doctors have no idea why I never had any problems from it until age 48. It took several years for this to be correctly diagnosed. I hope this information helps someone that may be having the same problem. Unfortunately my short and long term memory and my eyesight have been affected due to all the pressure to my brain. I still have some pain but at least now it is not constant pain.
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Unread 06-27-2011, 10:37 AM   #8
JA1717
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Default Please help me !

I had 19 shunt revisions a few years ago, and now have a Codman-Hickman programmble. To make a long story short, had the codman-hickman not been installed, I wouldn't be here, but the quality of my life is poor. I vomit every day, and the headaches are horrendous.
************************************************** *
As far as advice to YOU, have to consulted with neursurgeons from major University Hospitals etc. ??? IF the doctor gave you Zofran, they obviously think there is something wrong. Keep asking questions ! Some one with have an answer.....



Quote:
Originally Posted by lalahecky View Post
I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
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Unread 06-28-2011, 08:46 PM   #9
res5562965
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Quote:
Originally Posted by res5562965 View Post
I finally got a correct diagnosis 11/2010 after living with constant severe pressure pain in my head for over one year. I had many symptons one year prior to the pain in my head: constantly sleepy, hearing a clicking noise in my ear, numbness of face and head, confusion, mood swings, problems with walking and balance. I was diagnosed with Chiari I Malformation and Arnold's Chiari. Chiari will show up on a MRI if read correctly. After my Chiari diagnosis 11/2010, I had a MRI study of the spinal fluid in my head. That is when I was diagnosed a few days later with Arnold's Chiari. I had to immediately have a VP shunt put in my brain that allows the spinal fluid to flow to my abdomen. That gave me immediate relief from the pressure pain in my head. However, it did not get rid of the pressure pain in my head when I sneezed, coughed, gagged, or laughed. In Feb. 2011 I had Chiari Decompression surgery to make the opening at the base of my brain larger. I also had to have some verterbrae removed to relieve the "brain tonsils" from being herniated through the small opening at the base of my skull which was causing the remaining pressure pain. This is a congenital condition and the doctors have no idea why I never had any problems from it until age 48. It took several years for this to be correctly diagnosed. I hope this information helps someone that may be having the same problem. Unfortunately my short and long term memory and my eyesight have been affected due to all the pressure to my brain. I still have some pain but at least now it is not constant pain.
carrection on date diagnosed 11/2009
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Unread 06-28-2011, 08:47 PM   #10
res5562965
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Quote:
Originally Posted by res5562965 View Post
I finally got a correct diagnosis 11/2010 after living with constant severe pressure pain in my head for over one year. I had many symptons one year prior to the pain in my head: constantly sleepy, hearing a clicking noise in my ear, numbness of face and head, confusion, mood swings, problems with walking and balance. I was diagnosed with Chiari I Malformation and Arnold's Chiari. Chiari will show up on a MRI if read correctly. After my Chiari diagnosis 11/2010, I had a MRI study of the spinal fluid in my head. That is when I was diagnosed a few days later with Arnold's Chiari. I had to immediately have a VP shunt put in my brain that allows the spinal fluid to flow to my abdomen. That gave me immediate relief from the pressure pain in my head. However, it did not get rid of the pressure pain in my head when I sneezed, coughed, gagged, or laughed. In Feb. 2011 I had Chiari Decompression surgery to make the opening at the base of my brain larger. I also had to have some verterbrae removed to relieve the "brain tonsils" from being herniated through the small opening at the base of my skull which was causing the remaining pressure pain. This is a congenital condition and the doctors have no idea why I never had any problems from it until age 48. It took several years for this to be correctly diagnosed. I hope this information helps someone that may be having the same problem. Unfortunately my short and long term memory and my eyesight have been affected due to all the pressure to my brain. I still have some pain but at least now it is not constant pain.
correction on date diagnosed 11/2009
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