Hi my name is Bernie, I am shunt dependant and have been since age 12, now 46. I received a programmable shunt in 2004 due to an accident. I am currently doing some research which will benifit those of us who have magnetic valve shunts, and would like to hear specifically from those of you who have, or are caring for someone who has a preagrammable shunt, which has been reprogrammed inadvertantly due to being subjected to a magnetic field, such as microwave, train, rides, department or security screeening, etc., whether you have identified the cause or just feel it may have been the result of something you or they were exposed to, looking forward to hearing your stories. Thank you for your time, Bernie
Gabriel's Life » General
Programmable shunts and magnetic fields
(18 posts)
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Posted 2 years ago #
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I have never had a reprogramming of my shunt by the methods you describe above, but I do have story of something that happened less than 2 years ago.
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THE KNEEBONE IS CONNECTED TO THE SHUNT BONE
A Shunt Revision Tale Too Absurd to be Made up
– Steve Nadel
Burn your anatomy charts. Throw out everything you’ve learned in biology classes. If you thought you know all there is to know about Hydrocephalus, let me tell you a little story.Nobody is perfect, professionals can and do make mistakes. However, everyday people also make mistakes. I have a programmable shunt. With a few tweaks here and there, it has been working wonderfully for the past six years. That is how the product is advertised and has performed. Those minor adjustments in CSF pressure, which in the past would have required surgery, were a benign portion of a routine checkup to the neurosurgeon’s office.
I’ve just finished a three day stay getting a shunt valve replacement at a local hospital in the heart of New York City. To tell you how I arrived at this point, I must take you back to the early part of 2005. My 49 year-old left knee was starting to lock up on me. Yes, people with hydrocephalus can also have other health problems. I visited an orthopedic surgeon who asked me to take an MRI to see the extent of the damage in my knee. Here is where I made the big mistake. When I first received the programmable shunt, I was told that I should never have an MRI. In follow up visits to Neurosurgeons I have had MRIs with the doctor immediately reprogramming the shunt settings. However during this MRI my head would be outside the machine for a study of my knee. The shunt would not be involved in the MRI. What possible damage could happen?
I took that MRI last May and felt no ill affects. Not one. The MRI showed damage in my knee and as a result I had the arthroscopic surgery in June. The recovery has been very slow and my knee has not responded as I had hoped. The orthopedic surgeon said that he suspected that I have tendonitis, but wanted to rule everything out by taking another MRI. So in March of 2006, I went back to the same radiology facility and the radiologist tells me that they are going to place me in the machine headfirst. I told them I have a programmable shunt and it would not be wise for me to do it in that fashion. At that, the Radiologist tells me that I should not have the procedure done at all. I call my Neurosurgeon, who confirms that to be true.
In a follow up visit to the orthopedic surgeon, he thought that a visit to my neurosurgeon to reset my shunt would be a cautious and necessary thing to do. Mind you I have not had a headache or any affects since that MRI. However, I decided it was better to err on the side of caution and made an appointment.
At my neurosurgeon’s appointment, the doctor reprogrammed the shunt to the 120 ml setting that it was previously set at. Roughly eight hours later, I am at home and I am starting to get strange feelings in the back of my head. Being a veteran of the worst headaches imaginable, I brush it off. Some three hours later, when I lay me down to sleep I knew immediately I was in some serious trouble as the all too familiar room spin takes place. I knew I was probably in shunt failure, but why? I just saw the neurosurgeon and he reprogrammed the shunt back to the 120 setting; or so I thought.The next morning I woke up and I had the feeling of a boulder sitting on the back of my neck trying to force my brain through my eyes. I go to work anyway as I have to teach a class to new employees. I make it through the 8 hour class, popping pain relievers like mint candies. Mints candies might have been just as effective in relieving my pain.
I finish up the class and go back to my office and try to relax. But just like before I had a shunt implanted 10 years ago, when I go to unwind is when the pain becomes unbearable. I am now in such agony; I know my only recourse is to get to the ER. I call the neurosurgeon’s emergency number and he tells me one of his residents would be down to meet me.
A CT scan is done immediately. When the resident arrives he tells me that my ventricles look normal (as normal as a person’s ventricles with arrested hydrocephalus can appear), but he also says that he has nothing to compare the scans to. That is when I whipped out my Shunt Card. He compares the current films to the card and declared that the ventricles are the same size and tells me to go home.
Without dislocating my shoulder to pat myself on the back here, I have learned one thing from all my hydrocephalic adventures (even before I was diagnosed). When I know there is something wrong, there is something wrong. I don’t care what health care professional tells me otherwise.
I ask him if he is sure the setting of the programmable shunt is truly set at the level the neurosurgeon reprogrammed it at (120) and I insist that an x-ray of the valve be taken. The great thing about the programmable is that a simple x-ray can show the illuminated pressure setting dial inside the brain. The x-rays revealed that the shunt was set much higher than it was reprogrammed at (170) and was now over draining and that is why I was feeling the pain. So the resident scrambles to his office to get the programmable unit and reprogram my shunt.
He resets it to 120 and takes a second x-ray. This x-ray shows the shunt is now under draining at 30 ml. He attempts to reset the shunt again, still 30. I ask him if they have a second programming unit. He retrieves the other programmable unit and attempts another resetting Another x-ray reveals that the shunt is still set to 30. He finally declares that the shunt valve is busted and I must have a revision surgery. As you could imagine, I was angry and deeply saddened by the chain of events.The old saying goes, “What doesn’t kill us makes us stronger.” What lessons have I learned from this that I can take forward?
1. Don’t go near an MRI machine. If I’m driving and see a sign that says, “MRI done here,” I will make a turn in the opposite direction. OK, I’m exaggerating, but you get the idea.
2. Make sure that I get an x-ray immediately before an adjustment to the programmable is done. This is not cost effective and I’m sure there are one or two thousand insurance companies who will disagree with this, but it is the right way to go.
3. The programmable shunt means fewer revisions, but like anything, they can break too.
4. If it’s not broke, don’t fix it.Posted 2 years ago # -
Bernie:
I have a 3 year old son who has a programmable shunt. His shunt has changed on its own two times (that we know of.) The first time, I think it changed because I had allowed him to play with magnets that open childproof locks. (He was playing with four of them and they were actually quite strong; the neurosurgeon had previously told us that magnets woudln't cause a problem.) Long story short, that time, he was in the ER twice times, his ventricles looked fine each time and the third time we went in, they finally checked his setting. It was over draining.
The second time his setting changed, he had symptoms, we checked the shunt at home (having asked the neurosurgoen for a compass to check it) and it had changed AGAIN such that it was not draining enough fluid. We went to the ER and it was changed back.
The second time, we have no idea what changed it. I don't allow him to play with magnets, to be on the phone, to be in front of speakers, etc.
I hope you get some good information because I know the shunt companies don't believe that the settings change. :)
I hope that's helpful to you!
Posted 2 years ago # -
Hi Bernie, my name is Heather and my son Cole has hydro. He had is first and only surgery so far almost a year ago. So we are pretty new at all of this!
Well my question really has nothing to do with this story but what you mentioned in it. I have been looking for a shunt card or something similar for all of Coles info. Where do you go to find this kind of stuff for all of the medical records?
Thanks Bernie and I am glad you are doing well now!
HeatherPosted 2 years ago # -
I know they use Shunt cards in the UK you might check the the british Hydrocephalus website for info http://www.hydrocephalusinfo.com on ordering one. I got my son some books geared to children from their organization (Benny Bear books about a bear with a shunt) and in the books it mentions carrying a shunt card. For my son we just have a medic alert bracelet that lists his name, Hydrocephlaus, and VP shunt. When I talked to my Neurosurgeon about getting records via disc or a card he said if anything were to happen and we were out of the area our local hospital can/will communicate with the hospital we are at and send the info electronically. He also said as our son's doctor he would be in communcation with the doctors wherever were were and would would work with them on determining what to do. That being said if we ever go out of the country I will take his shunt info and MRI pics on disc just to be safe.
Posted 2 years ago # -
Hi Bernie,
My daughter Kait, is 20 yrs. old. She had the same shunt from age 2 to age 14. Since age 14 she has had over 70 surgeries, 45 of them direct shunt revisions. She had a double shunt in the Cisterna Magna and another ventricular shunt, they are connected with a Y connector, with an anti-siphon guard and a Codman progrmmable valve. Yes, Yes, Yes, we believe her valve has changed on its own. Her doctor has verified with an xray that shunt went from 160 (a good setting for her) to 120 (way to much overdrainage for her). Neurosurgeon reads the xray at 120, My daughter and I read the x-ray as 120 (we have the "wheel" from codman to line up on the xray so we can read our own), BUT no the rep from Codman Hakim (part of Johnson & Johnson) who meets us at surgeons office because they are concerned about her changing dial, tells us is there is NO WAY this dial will change on its own. I list the metal detector at the college she goes thru each day, her cell phone, and any other possibilites, and they say NO WAY. Now mind you, our surgeon is in NYC, Manhattan, really good hosp. and reall good doc. but the rep from the shunt manufacturing company says my doc probably read the xray wrong, or the x-ray was taken at a tilt, and it really was at the proper setting all along. We all were just mistaking. Hows that. After 10 yrs of med school, and numerous years working at top hospital in manhattan, the rep says my doc. can't read the film, or it was taken wrong. Very frustrating. If the valves can break, I don't mind. It is just a man-made object. And everything can break. But why cant the manufacturers just tell us this possibility, and if we need to we can change a valve but still leave the shunts in place. They make us think we are crazy when we tell them, her pain has changed and all she can do is law down, the nausea is worse and all this. So I am very interested in anything about valves changing. My doc. gave us a prescription for another x-ray with no date on it, so that when she has a change in pain we can get another x-ray and check the setting again. If it changes again i don't know what I will do. Don't want to keep dealing with a dial that changes on its own, or changes due to environmentl factors.Posted 1 year ago # -
Hi all,
My daughter (18) had a programmable shunt installed (medtronic strata valve) 2 years ago. It was preset in the OR at 1.5 according to the doc's records. By the first appointment 6 weeks later, it was set at 2.0. There was no explanation given to us for this change. My daughter started to have symptoms again (headache, double vision, nausea, fatigue) These symptoms were pretty much ignored and we were told that the shunt could not possibly change settings on its own. Then, months later, her doc checked it again and it was at 2.5. He said he would not have believed it if he hadn't verified it himself! She has chronic health problems that require frequent MRI's, but each time, we have had a neurosurgeon reset it to the appropriate setting. We finally went back to her dr last month because her double vision was getting worse. Sure enough, they couldn't even reset it. The valve will only set on .5 or 2.0, neither of which were appropriate for her. Her dr is finally taking her back in to surgery to replace this valve with a fixed valve. They have supposedly notified the manufacturer who has opened an investigation, but we have heard nothing further about it. These valves do reset themselves. My daughter says she frequently hears the "clicking" noise in her head when the valve is resetting. Everyone seems to want to sweep this under the carpet, but now we are facing more surgery costs and she is facing the risk of another surgery. I really think the manufacturer should own up to their mistakes.
Kate
Posted 1 year ago # -
This is so great (but I suppose not in a good way?) to hear of others who feel their shunts resetting (or doing "something"). When I am on my cell phone, using my right ear (my shunt is on that side) I can hear that "clicking" sound as well. My surgeon absolutely does not believe that the shunt can reset itself and thinks I'm a little cooky for even mentioning the clicking. It's annoying as I can barely use the phone anymore. My surgeon has said that he does not think I am shunt dependent any longer, but does not want to put me through another surgery to shut it off. Therefore, I am set at 200 but am still having headaches. The issue became that I started to over-drain and developed slit ventricles. I am so frustrated with all of this!
Posted 1 year ago # -
hello, my name is mary. my daughter dorothy is shunt dependent and has been for 43 years, her disabilities prevent her from giving us good information, re; pain, we know or hope we know from experience when things arent right, to make a long story short, just last week the neurosurgeon recommended a programmable shunt, after reading some of the problems with them, my concerns are increased, since it will still be a crisis before we know just how well this works, i would like very much to hear from a caregiver/parent,if there experiences with programmable shunts have proved worth the choice, i wish you all good luck. i'm new to computors, but i can see how beneficial they can be. 01/12/2009
Posted 1 year ago # -
Hi Bernie;
My shunt was also accidentally adjusted from a microwave oven. I did not know at the time what could do this I am finding out as I go. I think anyone who has a programmable shunt installed should be informed prior to leaving the hospital the do's and don't's of being a owner of these devices. My NSG never told me what not to do and it is very scary to learn of this now. The NSG's need to hand out an owners manual with each and every shunt installed.Duncan
Posted 1 year ago # -
Hey, I've been shunt dependent since I was 10 months old back in 1991, where I had a 'normal' shunt- last year [end of 2007] I had it removed and longstoryshort 6 weeks and 3 emergency ops later when they realised they'd made a major mistake in assuming I didn't need a shunt, I had my 5th of the bunch which was fitting the programmable valve to my new shunt.
I had all the warnings about going upside down, going near magnets, going deep underwater and all that right before the operation- it was actually all very well done- but I hadn't expected that my shunt would move on its own either-- but even when we found it had the doctors admitted it 'just happens' sometimes (quick note: I'm in the UK, I'd guess most people here are from the US).
I find it scary how people didn't know this could happen- though I do occasionally find myself paranoid every time I have a particularly bad headache, so sometimes wish I didn't know. The second time my shunt had to be adjusted I'd made a big deal out of a rather normalish headache I'd had for a week (- which to me has turned into just one of those everyday norms after the 2 or 3 years before my shunt removal where I'd had been having them everyday supposedly because the shunt was 'pulling'-) just because I hadn't finished my homework and didn't want to go to college- pretty trivial, yes- my mum insisted I get checked at the hospital, and guess what, the shunt was draining too much.
With the MRI scans, in the UK when filling out the forms for them it includes whether or not you have a programmable one- so the only unpleasant turn i had was when I had to wait an hour and a half for the readjustment after- even though they /knew/ it'd turned off in the scan (they did an x-ray instantly after)- so by the time I had it fixed I was already feeling a bit sick with a lovely big headache.I think it's great to have found this (I was actually just googling so I could help explain my condition to a friend), since I've only ever had the chance to hear another experience of hydrocephalus from one other person. Personally, I think the programmable valves are brilliant, otherwise, with how my condition had worsened, I would've had to have my shunt replaced repeatedly until the amount that needed to be drained had settled (as it did six months after the programmable valve being fitted). In my opinion, every one with hydrocephalus should be fitted with one (here in the UK they only fit them if you NEED them, unlike, so I've heard in America where you get them straight away, regardless), the possible benefits far outreach the possible dangers and if you know the warning signs of when you're over or under-draining it should be safe.
Posted 1 year ago # -
Accidental reprogramming of programmable shunts is a hydrocephalus health matter that needs to be resolved, and as a user in 2007-08 and shunt expert I will share my experience and recommendations.
I received a Codman programmable shunt (Medos) with siphon guard in 2007, and once my nsg and I found my optimized setting (6 tries) I was able to sleep thru the night with a tolerable amount of overdrainage during the day. But 2 months later, I began awakening in the middle of the night with HA, that I thought was increased pressure. My DiaCeph Test shunt monitoring system confirmed increased ICP, and I suspected either shunt obstruction or possibly the shunt lost its setting and was set much higher.
So I contacted my nsg who asked me to come in and reprogram the valve. No x-rays were taken. X-ray is the only way the pressure can be "read." When this continued to happen, I requested the specific x-ray to view the valve and it showed it at a much higher setting. This continued to occur and finally my nsg recommended that the valve be revised.
I contacted Codman with this information, and proposed an instructional video for monitoring your home for magnetic fields using a standard sports compass for about $12. There are published studies reporting that many household items like telephones and speakers can affect these valves. In checking my house, I was surprised to find a substantial magnetic field coming from my refrigerator.
After several months, my nsg suggested I be revised and asked what other valve I would like to try. So I had the OSV-2 (Orbis Sigma) auto regulating shunt placed in May 2008 and I've been fine since. It is not programmable, but does adjust to each patient.
Programmable shunts have their place in the care of hydrocephalus, mostly in assisting the nsg in finding the correct pressure valve for each patient. As few patients ever undergo ICP monitoring, little information is obtained as to the pressure/ flow needs of each patient. Without this data, nsgs are in the dark as to which valve to use, and this is the primary reason why programmables are so popular. But there is a tradeoff in that/how easy/how often they can loose their setting. I believe it happens much more than is reported, and if the changed setting is merely a slight change, the patient may not feel ill enough to contact their nsg. Even factors like storm fronts make many with shunts feel a bit ill. So we become accustomed to episodes where we feel ill and less than we would like. My view is - it is already challenging enough living with this condition. We don't need any additional complicating factors. If something can be readily fixed or improved - then do so.
As a scientist, I created a relatively simple but accurate method for "selecting and matching a shunt" to a patient using my DiaCeph Test and shunt data already available. This method then allows the nsg to use fixed pressure and other valves to match well with his patients. As a patient, I would not use a programmable shunt again until this accidental programming issue is resolved. However, it is my understanding the Sophysa Polaris shunt is not affected by magnetic fields around the home - so I might make an exception here.
Stephen Dolle
Keynote Speaker & Consultant
www.Diaceph.comPosted 1 year ago # -
Stephen,
I would suspect a refrigerator to be a large magnet for the obvious reason that many people love placing small magnets on them to hold items.
I dont have a programable shunt, so I am not so worried about having my shunt having such problems. I have had my VP Shunt placed in 1993 and with only one revision so far to date.
From reading others stories on this site, I make a lot of notes to help me watch for possible symptoms if another malfunction occurs as well from my prior experience like I had in Dec 2003. I hope I do not have a repeat of that one again since I lost my vision for approximately 10 minutes.
Posted 1 year ago # -
I had a programmable vp shunt placed on Dec 10th that I was told was set at 110. I went back to the Dr for a follow up appointment on January 22. I had been having frequent dizzyness and headaches of course. I've been having those for forever. She said that maybe I needed my shunt reset. She told me that the x-ray taken before I even left the hospital after surgery said that my valve was set at 90 and sugested that it be set to 110. I told her that the surgeon told me that he had set it for 110. She just looked confused and reset it. I don't know what could have changed my settings while I was still at the hospital. There was 3 days between surgery and the time the x-ray was taken. I think that the valve did change back to 110 but I'm worried about it changing again. I'm really new to the programmable shunt and the surgery to put it in was the first surgery I've had since the initial one when I was a baby. I'm now 19.
Posted 1 year ago # -
Hi. I have a programmable VP shunted toddler. We have no entra "magnets" in the home. (Not including things like cell phones, and functional applicances that require magnets for operation). I contact any toy company if magnets are a concern. Comapanies have allowed toy exchanges and returns with no complaints. We were told by our son's neurosurgeon that Magnetix are definitely too strong to chance (I heave also heard that the Leap frog magnet sets are as well). We have no magnetic train sets or magnetic anything anymore (writing sets...) . My other two children got rid of the magnet toys with no remorse. There is plenty to play with out there---why chance it? I do think that toys should be labeled contain magnets (for swallowing and GI issues, too).
Posted 1 year ago # -
i feel like my head is going to explode, but i dont want to go to the e.r. i doubt they will give me an x-ray to check my shunt, but there is definitely increased pressure. so frustrating. im awaiting a ct and it could take another month. im so glad im not alone in this..
Posted 11 months ago # -
Does anyone know of a way I can get my shunt reset w/out a neurosurgeon? It is impossible for me to see my neurosurgeon. I had so much pressure, and numbness, and everything else. I can hardly focus. I know the setting needs to be changed, but I can't convince them to give me a simple x-ray. They say my CT is fine, but I don't feel fine!
How can I get around this and get my shunt setting changed?
Has anyone purchased their own equipemtn to change their own setting??Posted 11 months ago # -
Hello all,
I am new to this forum, my sister has a shunt for about a year but the recent scan shows that the fluid still has not gone away..I have read somewhere that they have a device that allow you to program the shunt at home. Is there anybody know about it?.
My sister lived in another country.The medical facility is terible. The doctor who installed the shunt for her was in difference country.. I wish if we have some device to check if the shunt work or adjust the valve.. I appreciate your advice.
Thank you,
Y. A ArnoldPosted 9 months ago #
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