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 Do You Have A Shunt?

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Heidi
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PostSubject: Do You Have A Shunt?   Sun May 09, 2010 6:57 pm

Do You Have A Shunt?

Have you had a shunt fitted? I myself have one and I have to say it has made a big difference.
LP shunts are initially fitted if the ventricles in your brain aren't wide enough, which is why later it can be revised to a VP shunt.

My first shunt was an LP shunt, and although it did solve the headache and visual problems, it created another, in that it affected my mobility by damaging the nerves in my back, especially my sciatic nerve. As it was in for 5 years the damage it did is still there even though the LP shunt isn't.

What difference has having a shunt made to you? Has it made things better? How have you learnt to live with it, and was the surgery and recovery afterward not as bad as you imagined?
By posting you will be able to give members facing a shunt an idea of what it's like to live with one, which they may find reassuring and encouraging.


Last edited by Heidi on Wed Sep 28, 2011 7:50 pm; edited 5 times in total
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Mazzel114
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PostSubject: Re: Do You Have A Shunt?   Wed Aug 18, 2010 9:15 am

I have a shunt from my back to the 'belly'(?)

It worked very well! But now I'm to old for it because I got it when I was 12 and now I'm 18. So it have to be replaced.


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PostSubject: Re: Do You Have A Shunt?   Thu Aug 19, 2010 7:34 pm

I had one of those too for 5 years, and the one after that for 6 weeks, I now have a VP shunt, which I must say I prefer having, and it's working really well.
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missjean22
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PostSubject: Re: Do You Have A Shunt?   Fri Aug 27, 2010 10:04 pm

I have a LP shunt and to be honest it makes no difference 😢 They rushed into my shunt operation as they couldnt get the Lumber puncture done as i was on the verge of losing my sight and i now wish i never ever signed the forms for the operation. As every time i go to the neuro they say you have a shunt you cant have headaches, even though my pap is back as just as bad as it was before the shunt 😢 Then they wonder why i would prefer to go private
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PostSubject: Re: Do You Have A Shunt?   Sat Aug 28, 2010 5:18 pm

They really need to be checking the pressure as if you're pap is back and you're having headaches, then something's obviously not right. I don't understand why you haven't been sent for an MRI or CT scan, or even had an LP to check your pressure.

You have two options, you can either ask for a second opinion or again go through PALS. Here is the link from our Informational Links section about your rights as an NHS patient.


Don't be afraid to make a fuss Jean, it's your health that is the issue here, and if you are having headaches and problems with your eyes, then you must insist on being seen and being treated for it. Let us know how you get on.
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missy8319
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PostSubject: Re: Do You Have A Shunt?   Wed Nov 03, 2010 1:22 pm

I have had a shunt for almost 2 years and it was doing great but now I get headaches that are wrose than the IIH headaches. All the doctor wants to do is give me pain meds but I would reather not have them. I get these headaches every day and before I was only geting IIH headaches a few days a week. I am starting to think I was better off without it. 😢
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PostSubject: Re: Do You Have A Shunt?   Thu Nov 04, 2010 10:52 pm

Have they checked that your shunt is working OK, and everything? If you're having headaches everyday and there isn't any relief then your Neurosurgeon should be checking it out for you. I'd get him to do that, is it your normal doctor giving you pain meds, because he should really be sending you back to the neurosurgeon.
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missy8319
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PostSubject: Re: Do You Have A Shunt?   Thu Nov 04, 2010 11:03 pm

it's the neurosurgeon giveing the pain meds and he checked it and said it was working fine. He called the headaches shunt migraines. He said there is not much he can do but that it is good that it is still working.
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PostSubject: Re: Do You Have A Shunt?   Thu Nov 04, 2010 11:14 pm

He should have done blood tests and scans to check it properly.
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Sammie
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PostSubject: Re: Do You Have A Shunt?   Tue Feb 08, 2011 5:50 am

The doctor wants me to try a shunt.what are some of your views about getting the shunt for the first time.I must admit I'm freaked out 😢
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PostSubject: Re: Do You Have A Shunt?   Tue Feb 08, 2011 1:55 pm

I know when they told me I needed a shunt for the first time, I was a bit like you and was really worried about having the surgery and everything, but I have to admit that it wasn't quite as bad as I thought it would be and it did help a lot, I stopped having those painful high pressure headaches, and was able to carry on working full time. The main thing was it stopped me from losing the rest of my sight which was such a relief. I had an LP shunt for the first 5 years, then it was revised to a VP shunt, which I still have, and as you can see it lets me function well enough to run this group, and have a more active life.

If they discuss with you an LP shunt, this will because they consider your ventricles to small for a VP shunt. The difference with the LP Shunt is that it goes from the lumbar area of your spine, where you have the LP's, to your abdominal cavity.

We do have a link in this surgery section that shows how a VP shunt surgery is performed, and that might help you to have a clearer picture.

What you have to keep telling yourself is that it is going to help you get your life back together, stop all the pain and lumbar punctures, and give you the opportunity to do some of the things you haven't been able to do for quite a while. Focus on the positives of having the shunt, rather than the surgery itself, look to the after, it actually does help. If you want to ask anything else dont be afraid to ask.
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PostSubject: Re: Do You Have A Shunt?   Wed Feb 09, 2011 8:42 pm

I have had a shunt since 1995. It is an lp shunt. For the first 12 years after the shunt was placed, I totally forgot about the shunt and IIH. I had no symptoms, no meds, nothing. I lived life to its fullest. I worked full-time, and played hard with my kids. I rode rollers coasters, jumped on a trampoline, pretty much did anything I wanted. My shunt did not hinder my lifestyle one bit.

In 2007 my shunt broke and I had to have my first revision. 12 yeas with a lp shunt is close to miraculous. A month after that revision I had my second revision. 8 months after that, I had to have ONSF to save my vision, and 4 months after that, another shunt revision. So 4 surgeries inside of 12 month time frame. Needless to say, my shunt is not doing the job that my first shunt did. I now have a programmable valve and it is set to the lowest setting (highest amount of drain) possible, and still my pressure is high. I have also developed low back , hip and leg pain from the scar tissue that has built up on my spine from multiple surgeries and spinal taps. I wish my shunt could be taken out. I am not a candidate for a VP shunt because I have slit ventricles. My only other option is a cisternal shunt, and I am all for it. I just don't have insurance to cover the cost. I have recently applied for disability, so maybe someday....

I do have to say though that I wouldn't change my decision I am glad I got my shunt back in 1995. And I'm still glad I have it now, even though it causes me pain. I can only imagine what my pressure would be like if I didn't have the shunt... It was the best decision I made... otherwise I would be blind now
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PostSubject: Re: Do You Have A Shunt?   Sat Mar 19, 2011 6:06 am

I do not currently have a shunt, however it has been mentioned by neurologist and neuro-opthamologist that it may be my next course of action.

Does anyone have anything that simply explains the different types of shunts ans when they would be used?

I have to admit, I am terrified at the prospect of a shunt.

Thanks for any info.
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PostSubject: Re: Do You Have A Shunt?   Sat Mar 19, 2011 2:19 pm

There are two methods of shunt used to treat IIH, there is the Lumbar Peritineal shunt, which diverts CSF from the lumbar sub-arachnoid space (spine) to the peritoneum (abdominal cavity). This is widely used if the ventricles are too small for a Ventricular Peritoneal shunt.

It is is inserted between two of the vertebrae in the lumbar region of the spine, and also into the Subarachnoid cavity, which is a spongy tissue filled cavity that surrounds the brain and spinal cord, and this is where Cerebrospinal fluid (CSF) is contained.

It then drains the excess cerebrospinal fluid from the brain via the Subarachnoid cavity and transports it to the peritoneal cavity, it is eventually absorbed by the organs and passed out of the body during urination.

It's done under anaesthetic, and takes just a few hours. Two inserttions are made, one on your lumbar spine which is verical and the other on your abdomen which is horizontal..

There is also a Lumbar subcutaneous shunt (LS shunt) and is different because the cerebrospinal fluid drains into the potential space immediately under the skin. A narrow tube is inserted into the subarachnoid space in the lumbar part of the back during a lumbar puncture. It is then fed under the skin to a place where it can drain fluid, usually in between the last rib and the hip

A VP shunt is a device which drains the extra fluid in the brain into the peritoneal cavity where the fluid can be absorbed.

Itis performed under general anesthesia. A flap is cut in the scalp and a small hole is drilled in the skull. A small catheter is passed into a ventricle of the brain.

There is a pump (valve which controls flow of fluid) attached to the catheter to keep the fluid away from the brain. Another catheter is attached to the pump and tunnelled under the skin, behind the ear, down the neck and chest and into the peritoneal cavity (abdominal cavity). VP Shunt Animation

I've had all three of these and at the moment have a VP shunt. All worked quite well for me, the only thing being that the LP shunts damaged the nerves in my back which affected my mobility. However, don't be put off by that because it happens rarely, and there are lots of sufferers who have managed quite well with their LP shunts.

Don't be afraid to ask me as many questions as you need about these shunts and what it's like to go through the surgery and living with them.


Last edited by Heidi on Sat Mar 19, 2011 6:54 pm; edited 1 time in total
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brooke
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PostSubject: Re: Do You Have A Shunt?   Sat Mar 19, 2011 5:13 pm

I Have a Lp shunt ,i had 3 fitted in 6 months cos they all stopped working !! this one has now been in 6 years my headaches are worse than ever waiting to hear if i need it replaced or not!! :shock:
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PostSubject: Re: Do You Have A Shunt?   Sun Apr 24, 2011 2:49 am

How long do you have to stay in the hospital when you get the shunt put in? Going through LP's every few weeks kinda worries me, as I have lower back problems after getting an epidural 21 yrs ago.
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PostSubject: Re: Do You Have A Shunt?   Sun Apr 24, 2011 9:14 pm

When I had the LP shunt which was my first I was in for about 3 weeks, but when I had the VP shunt I was in for 3 days. I think it depends on how quickly you recover, and on your Doctors.
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pris72
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PostSubject: Re: Do You Have A Shunt?   Mon Apr 25, 2011 1:38 am

Thank you, Heidi for your prompt response. I am going to talk to the neuro Tuesday about all of this. He didn't really talk about much the other day. No mention of LP's, shunts or any of that. He just said he wants to run more tests 1st and then see where to go from there.
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PostSubject: Re: Do You Have A Shunt?   Mon Apr 25, 2011 10:08 pm

If it helps we have prepared guide sheets on the kind of questions you could ask your Neurologistand Neurosurgeon, and they also includes advice.

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PostSubject: Re: Do You Have A Shunt?   Mon Apr 25, 2011 11:30 pm

I've had an LP shunt since 2002..it's been problematic, but still saved my vision. I had seizures following the implant and was on the trauma ward for 5 days, but after a couple of caffeine drips I was fine. I was released home at that point. My catheter came undone and formed a knot in my side in 2005, so had to have a revision. Then I started having low pressure headaches and they found my shunt was working too well. They added a valve in 2007. I started having daily headaches in 2009 (yes, I'm on a 2yr cycle w/ this for some reason) and they found I developed a Chiari Malformation. They think I'm still draining too much fluid when upright, but it's managing my PTC/vision so won't move it. I've had fluid flow studies, MRI, CT Scan, Lumbar Puncture and everything is fine w/ shunt. We're now doing pain management. It can definitely be a struggle, but I am able to work and my vision is fine..I'm very glad the shunts are available, and don't want to scare anyone off (I'm told a lot of my experiences are rare). I'm doing pretty well considering I've had it for almost 10 yrs. I wasn't able to work w/o it and was losing my sight rapidly, so totally worth it!

Julie

8/24/12 update-they found my shunt was overdraining and I had low pressure headaches again. I just had surgery in April and back to normal. It's really important to find physicians that listen and truly understand IIH. It took me three years to find them, but only six months to resolve the issue once I was there. They just replaced my valve and catheter w/ something programmable, so hopefully less surgeries in my future. I was in the hospital over night and had four week recovery before returning to work. Shunts are truly amazing when they work..I wouldn't change mine for anything!!!


Last edited by medmisfit on Fri Aug 24, 2012 8:23 pm; edited 1 time in total
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PostSubject: Do you have a shunt?   Sat May 14, 2011 10:23 am

I had an LP shunt placed 8 weeks ago, and it's already not working properly.

The surgeon wants to do a revision, but I'm not eager to go through surgery again...trying a new med, though.

He told me, "Relax, I just did a 20th revision on a patient...they're a piece of cake..."

Um. Seriously? Bet the patient doesn't think so. TWENTY??????

Then again, peeps eyeballs pop out when I tell them I've had 27 LP's in the past year.

:roll:
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PostSubject: Re: Do You Have A Shunt?   Fri Feb 03, 2012 11:10 pm

Wow I have gained a lot of knowledge reading this thread! I am waiting to hear if I have been accepted as a good candidate for the Vp shunt. My sight is deteriorating rapidly! My neurologist has only ever managed to upset me once. I have had several Lps in the last 4 months and they all have to be done in theatre or under x ray guidance as they really struggle doing the lps and have damaged a nerve in my back which causes my left leg to really hurt. I am hoping I won't be hospitalized long after the shunt x
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PostSubject: Re: Do You Have A Shunt?   Sat Aug 18, 2012 10:48 pm

you all have no ideal what a life saver this site is.My dauther has just been told she needs a shunt.I was scared to death until I came on here. My dauther is 14yrs. old but still a baby to me! How do I explain all this without scaring her. She tells me she cant wait if it will help her with the pain. I am worried about which one they will do because she is already having back and leg pain. Should I tell the Nerosurgion about my concern.
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PostSubject: Re: Do You Have A Shunt?   Fri Aug 24, 2012 1:00 pm

Have you had a shunt fitted? I myself have a vp strata shunt when fitted was set to 1.5 now set at 1 which was done about a month after

What difference has having a shunt made to you?

im not on diamox so it must be helping.

surgery was no where near as bad as i was thinking. i told everyone the worst and when i came out totally fine. with my eye sight back and bright and clear i was so so happy. was kinda nice to be in a new type of pain lol
after getting out of hospital i felt that good i went out to dinner errr really dont do anything no matter how good you feel. im now just under 4 months after and everything is healed and seems fine only bad thing is it dont seem to be helped as much as it did to start with hummm

still happy i had it done just miss my car xx


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