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Author Topic: 'user-experience' of living with a VP shunt  (Read 4799 times)
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NLGrace
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« on: March 03, 2009, 10:47:05 PM »

Hello,

I am new to the forum and came across it on my hunt for first hand stories from people who are living with a VP shunt to relieve intra cranial pressure.

I am a 35 year old woman who has been diagnosed with a sinus thrombosis in 2001, after a year of being told I was just suffering from stress....

Upon diagnosis, I didn't respond to Diamox and I was told I needed optical nerve fenestration to save my vision. This backfired spectacularly and I have lost 75% of my vision in my left eye (The surgeon hit the optic nerve 3 times, instead of just cutting a slit in the covering of the nerve...!). As I still had headaches, raised pressure and impaired vision after the optic nerve operation, an LP shunt was inserted.
This also didn't work for me as it overdrained, giving me low pressure headaches instead!

By then the doctors in my native Holland had all given up on me and I moved to the UK. The amazing doctors in the National hospital for neurology and neurosurgery have been amazing! They have removed the LP drain and put me back on 1500 mg/day of Diamox, which now does work.

BUT my neurologist is keen for me to have a VP shunt - apparently I am his patient on the highest dose of Diamox and he doesn't think I should be on it for that long (have been since 2005). He inquired at every appointment whether I have already changed my mind. I am actually thinking about it now, as I am starting to think the constant high pressure is starting to affect my memory and I am also getting a bit tired of being reliant on medication all the time - tired of feeling like a patient all the time.

But on the other hand - I haven't had the best experiences with procedures (even though I trust my neurologist and -surgeon 100%).
I would love to hear from other people what made them decide to have the operation ( if they had a choice) and how their VP shunt is treating them. I have only ever met 1 person who has one and she has told me all sorts of horror stories!
Also, do they shave off your hair before inserting the drain?
Thank you for your replies!!
Grace
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x Shelly x
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« Reply #1 on: March 03, 2009, 11:55:29 PM »

 wave Grace,

   First of all let me welcome you to the IIH Support Forum.  I have moved your post to the VP shunt board where more members are likely to see it.  cool

  we have lots of members with VP shunts, I'm sure they'll be along shortly with their replies...

   hug Michelle

   
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Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.
didles
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« Reply #2 on: March 04, 2009, 01:54:00 AM »

Hi there Grace,

I too have suffered from complications from the O.N.S.F as a result I lost all my vision and I can understand your anxieties. If you trust your surgeons I would say go for it, It will be hard leading up to the surgery but the end result mey be worth it.

I had my VP shunt first back in 2005 and on number 4? now My personal opinion is when they work they are great. But they do break, and yep they shave some hair but that all depends on the surgeon.

Take Care Diana
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meggymoo
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« Reply #3 on: March 04, 2009, 07:01:33 PM »

I would love to hear from other people what made them decide to have the operation ( if they had a choice) and how their VP shunt is treating them. I have only ever met 1 person who has one and she has told me all sorts of horror stories!
Also, do they shave off your hair before inserting the drain?

Hi Grace,
I had a vp shunt in October 2007, I have had an overally good experience. I went back to school after a couple of weeks but couldn't manage and have only started back all week, 2 weeks ago. But as soon as the vp shunt was out in my eyesight got better and the swelling of my optic discs settles, but not completely. I only had a little hair shaved and it was easy to cover up. I have had no problems, with blockage or infection so fingers crossed!! It took a good year for the headaches to settle, but I would say that for me it was worth it.
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Lyn
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« Reply #4 on: March 04, 2009, 08:22:24 PM »

Grace

I've had a VP shunt since Oct 07 like Megan,prior to that I had a successful (until it overdrained) LP shunt for 17 yrs. I will admit that the VP shunt has taken some getting used to after having the LP shunt for so long as they drain differently and again like Megan I have struggled to get back to a full time work and home life but overall I am happy with it. I went for 6 weeks without a shunt and quite frankly would have attempted the operation myself if they hadn't put one in as I realise I just can't function without one.
Yes I had part of my head shaved but a friend of mine is just going through chemo and has no hair so compared to her, mine was nothing. It soon grows back.
I think there are always people with horror stories and yes sometime the shunts don't work, I had an LP shunt that only lasted 3 weeks but you have to weigh up the whole situation, do you really want to continue on medication, is it worth taking the chance. I am a firm believe that our surgeons wouldn't recommend doing costly procedures unless they felt it was the right thing to do.

Lyn
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emmaokane
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« Reply #5 on: March 06, 2009, 10:31:56 PM »

hiya grace,
              my names emma and i have two v.p shunts 1 on the left and 1 on the right i had the right 1 originally inserted in dec 2008 and the left one put in jan 2009, altogether ive had 5 operations since dec 2008 and although i have been through hell and back my headaches have somewhat improved and i have at least regained some of my old life back.but its only early days. iam still having some headaches on the left side but iam trying to live with these with painkillers lol!! i tried diamox and it did not work for me at all even though i was on above the lincensed dosage,i know you are worried and apprehensive and that is only natural,and as for the hair thing they shave only minimal ammounts and some surgeons even perform shunt surgery without the need for shaving,my hair is already growing back and its been shaved and reshaved its a tiny patch you hardly see it . the best thing is to speak to your neurosurgeon and weigh up the benefits of having the op if its going to change your life and prevent your sight from further detioration then its worth discussing,your options i hope this has helped good luck emma xxx
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kate100
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« Reply #6 on: March 16, 2009, 03:16:10 PM »

grace,

Is a stent an option for you? Before undergoing more shunt/ eye surgery, ask about stenting and if it might help you.
 
Kate


« Last Edit: March 27, 2009, 02:55:53 PM by kate100 » Logged
soupdblu
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Feeling good! VA shunts work!!!


« Reply #7 on: March 21, 2009, 07:10:03 PM »

I also had a functional LP shunt for 17 yrs before over-draining and now have a VA shunt.  (feb 2009).. jut like VP but think heart instead of belly....  it saved my sight and is controlling the headaches for the mostpart... enough for me to function...  my doctor however likes to be thorough so he shaved over half my head...I knew this going in so we had our own shaving party...(his advice to me)  and i was as bald as the day I was born....  I have fuzz now and am working toward chia pet!  I'd listen to your doc.. he's not making this suggestion lightly!  good luck and our prayers are with you!
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