Anyone out there programmable?
 

Hi I went programmable in the fall of 2003. I have been wondering how long programmables have been in use and how many here have them. What have your experiences been with them? Does anyone out there know the general ifespan of a programmable these days? All the bionics seem to make it possible for more to go wrong than in the older shunts.

I am one of the older ones in here with a shunt. Mine was first placed in October of 1955. I have had 8 revisions and am doing well considering.

Your input would be appreciated.

Regards
Mister

I think prgrammables were around in late 90s, early 2000. Hayley has one, not helping her slit vents though.

Programmables
 

1955 WOW! I didn't think they were around then. I have a Medos programable, which was installed in December 1998, replacing the previous set-pressure one. I have fallen on my back at work (slipped on a wet floor), smacking the shunt on the concrete:eek: , and no damage occured. MRI was A-OK, I don't recommend it though. MRI's or strong magnetic fields will mess with the settings, and re-set it to the lowest level. You will want to have the calibration checked by your neuro after a scan. They are pretty darned durable.

David

Shunts
 

The first shunts were developed in the mid 1950's by a man whose sone died from hydro. They have advanced a great deal sinc that point and as suecr says the programmables have been around since the 1990's. There are currently at lease 26 different types of shunt in se around the world for many different types of problems. Many of us are alive today as the result of them.

I wish you all the best in your adventures with hydro and any of the other problems that sometimes come along with it. It is hard sometimes but we just keep plugging along and deal with what we have to when we have to.

Sue you made me smile when you remembered that I was a patient at BWH. We haven't talked in months. It was nice to see that you remembered.

Be talking in here later no doubt

Regards for now to all

I was the first person in the UK to recieve a programmable shunt in...I think it must have been '92, it didn't last very long and the circular device carried by the hospital to change it looked a bit silly....It was also a bit silly not being able to go through metal detectors in airports.

arachnoid cysts, sp shunt 07
 

I am so glad to finally find another person who knows the real life experience of having arachnoid cysts, fenestration, burr holes and now shunt!
I am concerned about all of this because of 4 year old has already gone through this and I need to know what to expect in the years ahead. Can anyone advise?

Programmable
 

Hey,

I had a programmable shunt for only a few weeks then it failed like previous VP shunts. I had to have an MRI done; which caused the setting to be off so my neurosurgeon put me in a fluoroscopy machine to re-adjust the setting, as he dialed the device behind my right ear I could hear every click... It was very strange.

In December 2002 I have the ETV procedure done and have been shunt free for almost 7 years now. During 2006, I had four procedures as a revisions including a 4th craniotomy with fenestration because I have dandy-walker syndrome also. My last surgery was August 4th 2008 right have I flew to Utah then went to the beach the following weekend. I wonder if flying had anything to do with the complications? Before I had no problems with flying.

Haylea

I have been programmable for about two years... and I wish I weren't! Ever since I received this shunt, I have had blurred vision, and a constant low-grade migraine. I've basically been told I have to just deal with it... after a plethora of medication cocktails have been tried and failed.

first adult revision gave me my first programmable shunt...
 

no kidding in the Fall of 2003, around Halloween. In 2006, I had 4 revisions of a programmable shunt in 6 months, and in 2009, I had 7 revisions of a ProGAV gravitational VP programmable shunt in 3 months. This type of german model shunt is to prevent overdrainage, but obvious not meningitis, in which I was in the hospital for-- for 5 weeks. The only downside is that it causes headaches every 4 months, which could be temperature/weather related, as we have gotten smacked with feet of snow out here and my head really hurts! I was born with a Dandy-Walker cyst that caused my hydro btw!

I got a programmable shunt March 2008. No problems so far... other than getting MRI's & bluetooth worries. Both can change the settings... one guy I know it sets off alarms in stores! Best wishes!

My first VP shunt was placed in 1968. I had five revisions up to 1976. I haven't had any since then. I did have two sudden headaches last weekend(Super Bowl XLV). But they were due to exposure from a gas leak from the furnace.

programables
 

Hi been there done that, i'm Heather Hru? i got my first Programable in 2003 as well i don't know anything about store alarms but i will duble check. it's never happened to me anyway, i do know that you can't go through any medle detectors not even being swiped that's what my drs told me i have had mine for awhile and it is tricky please check with your neurosergeon or Neurologist

Programmable
 

I just had a revision a month ago and my neurosurgeon replaced my fixed VP shunt with a Codman Haskim (sp?) programmable shunt. I had the setting changed 2 weeks ago and now it's draining too much supposedly and causing my headaches and constant tiredness. So, I go back tomorrow to get the setting changed. I was off work 2 weeks after my surgery then talked the dr into going back to work last week. Big mistake!! I have an office job but my mind just wasn't all there yet. I was super forgetful and my thinking was slower. I honestly think this Texas heat is not helping either. It's just been miserable. Normally, i'm constantly on the go and busy but I've been draggy. I want to take more time off to actually take it slow and heal up right but not sure if my dr will approve it. I did so well the last 25 years with the fixed shunt. I hope this programmable one was a good idea.

went programable in oct 2010
 

I had my first shunt put in October 2010 and it was a strata programable shunt. So far it had served its purpose but now I am overdraining. My doc said there is a new one coming out in the fall he wants to put in because you can shut it off and it has more settings. My condition seems to keep changing from high to low pressure so the programable is probably best for my situation. Looking forward to the day I no longer depend on it.

Programmable Shunts
 

Hi have had a magnetic shunt since Feb 2010 when I had a shunt blockage. I have had issues since. The setting has been altered up and down on several occasions and I am still suffering headaches. I only have approx. 30-45 mins maximum of concentration at any time. I was told the shunt blockage affected the brain more than they realised but I have been given no real answers to any solution. I also suffer light headedness and not sure whether it due to the shunt or not? Access to my Neuro Surgeon is hard for me as we do not have one in my town and he only comes up monthly.

Any out there programmable
 

Not anymore, I get totLLY CRIPPLED IF THEY PUT ONE OF THOSE IN MY HEAD, nOW I''M BACK TO A FIXED PRESSURE SHUNT AND THE DAMN DOCTOR PUT THE WRONG ONE IN SO i'M SO WEAK ON MY LEFT SIDE i HAVE TO USE A WALKER AND i'M FALLING ALL OVER THE PLACE. PROGRAMMABLE SHUNTS ONLY LAST ABOUT 8 TO 10 YEARS IF YOUR LUCKY. STICK WITH THE FIXED PRESSURE ONES AND YOU'LL HAVE FAR LESS COMPLICATIONS........

I had a programmable shunt placed five weeks ago. I have three settings and have had to be adjusted to all three! The setting the doctors have settled on is too low and I still have a headache! The doctor has mentioned putting in a different shunt with 21 settings so he can dial in a more accurate setting for me. I have tried to just live with the headache I have to avoid yet another surgery... but I don't think I will be able to take it much longer. The adjustments I have had so far have been interesting... like the other person mentioned earlier, you can hear the shunt changing. It's a strange clicking noise. I felt an odd sensation (not painful) when it clicked. Hope this helps.

Programmable Shunts
 

Hi! I have had a shunt since I was four and recently had a revision in 2010 because the LP shunt was disconnected and they put in a programmable VP shunt. I had a few more surgeries due to infection, and have been having headaches and stomach ache, which haven't been figured out yet. But the nice part about programmable shunts is that if you are experiencing headaches, you can have the pressure adjusted to make the shunt drain more or less.

Programmable Shunts
 

Hi! I have had a shunt since I was four and recently had a revision in 2010 because the LP shunt was disconnected and they put in a programmable VP shunt. I had a few more surgeries due to infection, and have been having headaches and stomach ache, which haven't been figured out yet. But the nice part about programmable shunts is that if you are experiencing headaches, you can have the pressure adjusted to make the shunt drain more or less.

dentist
 

What about dental xrays ? Safe ??

New to programable
 

Hey y'all! This thread is really informative, keep the replies coming!! I am 36 yrs old, I was shunted at 6mos old. My first shunt was a fixed pressure, it lasted 13 years, my second was also a fixed pressure and it lasted 23 years. I received a programmable shunt YESTERDAY and I am concerned about it mainly because its something new to me and I had such good luck with fixed valves. Out of 36 years, I've only had 12 revisions and only 2 of those were because of valve problems. Any input on programmable valves is greatly appreciated!:)

Shunting has created problems since Day one
 

My daughter had an AVM bleed at the age of 15. She had hydrocephalus then, but because of issues of having acquired a pseudomonas infection in the brain at the time and she had to have the avm removed, we were leary of an additional shunt insertion. She was able to tolerate not being shunted until 2009 where she did not have any headaches, no nausea or issues prior. When she was 21, she developed a fine tremor and vague symptoms which prompted me to bring her to emergency. They found enlarged ventricles and shunted her with a medium flow shunt. That's when the nightmare of all kinds of issues began. Her eyes rotated non stop, her left cranial nerves were affected, her headaches were so severe that she was screaming in pain if she was elevated, and were only slightly decreased when lowered to a laying position. Then a programmable shunt was put in, with more relief of her symptoms. Another shunt was also put in to rescue the left cranial nerves ( she had a non communicating cyst where the AVM had been which got larger as the other shunt drained)
Well, things got better, but she still has many issues. She actually was better before she was shunted. When we want the shunt adjusted , we need to check with the neurosurgeon, who is reluctant to adjust. So my daughter has headaches, worse when standing, tremors , also worse when standing , and balance issues. I wish she could be as she was before she was shunted. But, I know that she needs to have a shunt. I believe it is flow issues that need fine tuning, but the neurosurgeon is reluctant and not willing to spend the time. Is there a neurosurgeon out there for adults who will? We are from Canada, but will travel to find some answers.

Ohh wow, I'm not the only one. PHEW.
In January this year after 17yrs of a fixed pressure shunt I was fitted (makes me sound like a car) with an adjustable valve. The first one died within 8 months and I had another fitted in August. I had learnt how to manage the ongoing headaches over the previous 17yrs and sure it wasn't easy but I could cope and function. But since the August procedure the pain has been Bad, very bad and oh my god. I have a constant cloud of pain with periods of intense pulsating bolts of pain. The previous headache, off and on, affected my right eye but now the constant pain is in the right eye passing thru the bridge of my nose and affecting my left eye. I relate the pulsing to somebody shooting a steel bolt from the back of my skull out through the bridge of my nose and exploding.
The dr's have been less than helpful as they have 'fixed the problem'. I have queried the pressures. The response I received was "there should be little to no problem. Lets do a scan and see. Come back in a month" so I wait. I have only met 1 other adult with a shunt, whilst in hospital recently. She had developed an infection and was basically bedbound. The dr's had removed a portion of her skull to allow room for the swelling due to the infection. As they say "...but for the grace of god, go I". She was in a much worse position than me. And there is no way I could make any comparison.
But in reading some of the comments within this post, I can see many images of myself, which is comforting to know.

Thanks
Merl1n

Hi
My son has two shunts both are programable. Medtronic valves. Using two shunts in same person is still not clarified but is working fine. It is quite durable and need programming only after MRI. No issues when passing through metal detectors or using electronic devices. He has many issues and surgeries related to hydrocephalus but shunts are working well.
Thnx
Gijo

Worse when standing indicates over shunting. She definitely needs someone who's willing to do the fine tuning. I'm in Edmonton, there are several excellent caring surgeons here who can help her. How to gain access to one of them might be another issue but maybe your GP could send a referral?