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 non programable lp shunt possibly failing

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puna
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PostSubject: non programable lp shunt possibly failing   Wed Sep 03, 2014 10:30 pm

I was fitted for a non programmable lp shunt in nov. 2013. everything except for horrid back pain seemed to be going okay, up until about two weeks ago. i've really been going downhill. Waking up everyday with headaches, that do not get better with laying flat or sitting. bouts of horrible vertigo and dizzy spells throughout the day. I called my dr and have to wait until next week to get in. I no longer have a NS, the one who fitted me will not see me, which is a good thing cause he was a jerk!!!!! I had to file a complaint against him. I have been to two other NS both of which said the same thing your eyes are fine and that's what the shunt is for and one went off on me about weight and how he will not treat me until I lose the extra 40 lbs.
SO........ that's a little of my back story my question is this, how do you know if your shunt is failing and can they still test your pressure? and if so how? I was told since the shunt I cant have lps anymore.
oh ya btw im also on 200mg Topamax a day as well for pain in my back.
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medmisfit
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PostSubject: Re: non programable lp shunt possibly failing   Thu Sep 04, 2014 7:42 pm

Wow..I don't even know where to start! First, you can still have LP's with a shunt and just because your vision hasn't been affected yet doesn't mean it's working. LP's are not used or accurate for overdraining, but should be able to identify high pressure. They just need to do it by fluoroscopy, which is by x-ray so they can take pictures and see where the needle is going. If you're not getting relief from laying flat, then it's not low pressure. If symptoms seem similar to before shunt, it would seem to be high pressure and, therefore, your shunt is not working. Second, weight can affect IIH but doesn't necessarily cause it or help it in every case. If you're having symptoms again, they need to test and address that issue. Third, if the Topamax is new or recently increased, it can also cause headaches and other neurological side effects. Hopefully your GP will at least be able to help you sort it out. If it gets worse or unbearable, I suggest going to the ER. Let them know you have a shunt and have been having symptoms again..usually moves you up in triage.

I hope that helps!

Take care, and keep us posted..
Julie
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Wylee
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PostSubject: Re: non programable lp shunt possibly failing   Fri Sep 05, 2014 2:07 am

Hi Puna, and welcome to the forum.
I too have a lp shunt.  They are known for having a short life span.  I had mine put in Nov 2011 and it amazes the docs it's doing so well, but I have had it checked twice already to see if it's working correctly. nThe test they can do is called a myelogram.  They do a lumbar puncture, to check pressure, and then they add a dye into your spinal fluid.  They have you roll around on the gourney and then wait a couple of hours and then recheck the fluid's path under a fluoroscope.  My shunt takes hours to work, but as long as the pressure is within the right zone (mine has a programmable valve) it does dump the fluid when the pressure rises, which is what it's supposed to do.  
Why did your NS install the shunt without a programmable valve?
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puna
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PostSubject: Re: non programable lp shunt possibly failing   Fri Sep 05, 2014 11:15 pm

he put the shunt in without the valve because he said the valve is the reason lp shunts fail. which I have no learned is bs. I have never had mine checked. Im excited to see the gp on Monday, and have hopes that he will do something, im not sure what but something! living in a small town none of the drs here know about IIH other than what they have learned from my case. LOL last time I was in the er we argued with the staff that I had an lp shunt not a vp shunt and I didn't have high blood pressure. they even went as far as doing a ct on my brain to check my "vp" shunt. they then contacted the ns that fitted my shunt and he informed them I was no longer his problem. I honestly feel like ive been left out for trash. and im really crossing my fingers that the dr will listen to me on Monday, and if not then ill march to the er and demand help, cause this is just getting worse!
I will mention having an lp, they don't do lps under xray here they have to send me to a diff city ( 4hrs away) its the closest place that will do it. I thought they could but wasn't sure.
thank you guys!!!!!!
I'll let you know
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medmisfit
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PostSubject: Re: non programable lp shunt possibly failing   Mon Sep 08, 2014 8:37 pm

I'm sorry you've been dismissed and treated so poorly..I definitely understand your frustration! I drive 3 hours for treatment and live in a capital city. I moved here after diagnosis and treatment started because it was 3 hours from where I lived, but even the "specialists" here were stumped after awhile. I'm now off to another city any time I have issues with my LP Shunt, but it's totally worth it! The surgeon there listens and was able to properly diagnose me after one conversation. It was the same thing I had been telling surgeons here for 3 years, but none of them would listen. They're apparently doing tests here that were found obsolete several years ago and using the results to turn people away. It was a real eye opener for me and I encourage you to go to the facility 4 hours away. Of course finding someone to drive isn't always easy, but I wouldn't go anywhere else now.

I hope you were able to find support today..please let us know how it all worked out!
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puna
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PostSubject: Re: non programable lp shunt possibly failing   Mon Sep 08, 2014 10:53 pm

went to the dr today, he wants me off of the Topamax because he thinks im now malnourished, but... after I left he sent me over to the eye dr and had my eye pressure checked and tomorrow is going to check for paps. the pressure wasn't to bad my left eye was only 13 my right eye was 21 I think. problem is without Topamax I get headaches even worse. and hes trying again to find another ns. im just frustrated and feel alone in the fact of not having a dr that knows what to do with me. his words today.
"you are a mystery to us here, and trying to find you good help with such a rare disease is not easy, this may take me a while" well problem is when im waking up in pain and stuck in bed all day in pain and having black outs and flashers alld ay I don't have a while!! I have so uch support with my family and support groups but not with doctors. he doesn't want to do an lp to check my pressure unless they find paps again in my eyes. I tried to explain that paps don't have to be there for high pressure. I also asked about low pressure and over drainage and chiari and his response, oh that doesn't happen. see this is why I need a good NS and one soon! he said I could have symptoms of chiari but lps chunts and iih are not related at all to chiari. ugh! I just want to know if this damn shunt is failing on me cause my symptoms are horrible, almost worse than before the shunt!
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Wylee
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PostSubject: Re: non programable lp shunt possibly failing   Mon Sep 08, 2014 11:36 pm

it certainly does sound like you need to check the shunt's patency (see if it's working).
Where do you live that getting help is so far away?  I moved 275 miles to be closer to my docs because the buffoons I had to deal with were making me doubt my sanity!  I would highly recommend trying to find a doctor/hospital closer to you that could reaccess you.  I was able to find docs that could then pass on info to my GP so he could do some help at home.

Julie is 100% correct:  you can have abnormal intracranial pressure and very normal paps!  The only way to determine the ICP is by doing a lumbar puncture.  The only way to check to see if a shunt is working is by doing a myelogram.  You may need to make a two day trip out of it but please, get to a better place and have this checked out.
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puna
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PostSubject: Re: non programable lp shunt possibly failing   Tue Sep 16, 2014 8:02 pm

hey guy, well I went to the ophthalmologist, good news eyes look good, he is sending in a referral to a ns and a neurologist out in chico. its only a two hour rive which isn't to bad. he is bummed about my insurance. I have state insurance so my choice of doctors are limited to only a few and not good ones. I was denied to see Stanford. which breaks my heart they have specialist there just for iih. My gp here will not order a lp or send me anywhere for one. he doesn't feel I need one and says he is leaving it up to the ns. Its irritating as hell, but im staying positive knowing a referral has been sent in somewhere. I also took ot of what you guys said about the myelogram.
  Also I wish moving was an option but its not :( I live in a tiny mountain community, closest big city is sacramento, ca and I have been there before. infact I was flown in there and was admitted for almost 2 weeks and they had no idea what to do with me.
you guys gave me more information than my dr here and thank you for that! I will be taking my notes with the info to the ns and neuro and demand help. im tired and worn out asking and begging for help with this! I now my body better than they do and know something is wrong!
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medmisfit
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PostSubject: Re: non programable lp shunt possibly failing   Wed Sep 24, 2014 4:27 pm

You definitely just have to keep going and talking to people until someone hears you. I'm glad you have a new referral..hopefully you'll get some answers there. Please keep us posted!
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