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 Having problems with my LP shunt .. even when the neuro says it doesn't HELP

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mariska3006
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PostSubject: Having problems with my LP shunt .. even when the neuro says it doesn't HELP   Sat Apr 07, 2012 6:52 pm

Hi you all.
My name is Mariska and i live in Holland also know as the Netherlands.. Sorry for my spelling ill do my best ;)
If been diagnosed with iih in 2010, I had a viral menigitus and after that the headache never stoped. I had more then 30 Lumbal punctures (may be more,but i stopped counting at 30.) after 16 months they diagnosed iih.
they decided to place a Lp shunt. The shunt diddn't work as it needed to work so they fixed it 3 times.

now im having problems for the 4th time, I have a leak in my back. there's liqor leaking underneath the skin. ( thats what the echo says). i have a very painfull lump and everyday i have headache's. The most painfull thing is the lump.. i went back to the neurosurgeon (for like 10 months now!) but they say there's nothing wrong ( what about the echo and the lump? there's clearly a leak). The only problem (well for them not for me) is that im pregant! im having a little boy (7 months and oe week)

Im getting sick and tired by every time i visit my neurosurgeon, cause all i hear is: there's nothing wrong,dont worry!

I know and feels that there's something wrong and now i feel stuck!

do you all have this problem with the LP shunt? Cause my docter say; im not the only one but they cant fix it.. ( kinda strange answer the studied for it)

what am i to do? should i keep calling my neurosurgeon or just trust him that there's nothing wrong even when my back huths like hell?

greetz Mariska



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Heidi
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PostSubject: Re: Having problems with my LP shunt .. even when the neuro says it doesn't HELP   Sat Apr 07, 2012 7:33 pm

Mariska I am so sorry you're having problems and that your Neurologist isn't working on fixing it for you. I have had the same thing you have happen to me twice, and it was fixed straight away with surgery. If your back is leaking it is leaving you open to infection and if there is clearly a lump forming in the area of your shunt then it needs to be dealt with.

As you are pregnant that is more reason for him to be dealing with this leak so that you are not vulnerable to any infection, because if you do end up with an infection you will then have to have intravenous antibiotics and surgery.

If your doctor is adamant he cann't do anything then I suggest you ask for a second opinion and you are entitled to under your Patient Rights see National Patient Rights Legislation in the Netherlands. It is not acceptable that your doctor is leaving this untreated and has told you it cann't be fixed, and I am horrified that he has implied there are others that have been left like this.

Your doctor and surgeon has a duty of care to you, that's why they take an oath, and he should be doing all he can for you, and not dismissing you with claims of it cann't be fixed when it can.

Please see another Neurosurgeon as soon as you can. hug

Heidi xx
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medmisfit
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PostSubject: Re: Having problems with my LP shunt .. even when the neuro says it doesn't HELP   Mon Apr 09, 2012 4:04 pm

Mariska, I agree w/ everything Heidi said. I am dealing w/ a similar situation, so I know how scary and frustrating it can be. My LP shunt has been overdraining my spinal fluid when I'm upright, so I've been having low pressure headaches and spinal pain every day for three years. I had to see four different surgeons before I finally found someone that listened, and he scheduled me for surgery right away. It sounds like your current surgeon is just dismissing your concerns without any explanation, so a second opinion wouldn't hurt. No one knows your body better than you do, so trust your instincts and never give up!

Take care,
Julie
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mariska3006
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PostSubject: Re: Having problems with my LP shunt .. even when the neuro says it doesn't HELP   Mon Apr 09, 2012 8:28 pm

Hai Heidi and Julie.
Thank you for the comments. It makes me feel better that im not the only one that is having problems with an Lp shunt ( sounds strange to say that!)
I live in Rotterdam (holland) and the nearest hospital who knows and help people with IIH is in Amsterdam its an 1.5 our drive.. the neurosergeon and other docters say its not smart to go there cause .. if the shunt get infected they need to help you in 4 hours.. so the drive to the hospital is to long.. (but still im consedering to go there)..

Julie: Sad to hear your story! i can feel your pain, I think we all know how its feels ( i had a low pressure headache after a lumbal puncture) sad to hear that they let you live like that for three years! did you feel the spinal pain only at the place where the shunt was fitted?? or did your whole spine hurth? how do you feel right now? and do you still have the lp shunt?

Heidi: thank you for the website i can work with that one! tomorrow i call the neurosergeon i have lots of thing to say to him and to ask him.. even if the lump didnt hurth so much i still wanted it gone! i wassent born with that lump on my spine so i dont want it there... what i dont understand is that there's so much problems with an LP shunt .. why do they even place it? i saw that you have a vp shunt.. did it hurth? and how long did you recover?

Sorry lady's for all these questions Smile

Lots of love...X





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medmisfit
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PostSubject: Re: Having problems with my LP shunt .. even when the neuro says it doesn't HELP   Wed Apr 11, 2012 3:48 pm

Mariska,

Never feel bad about asking questions..that's why we're here. Hopefully you'll find some useful information and find some relief soon!

It seems that everyone responds differently to LP and VP shunts, so you never really know how they'll work out. You really just need to do your research and talk to your surgeon about the risks/benefits of each. I personally didn't have an option b/c they weren't really using VP shunts for IIH when I had my shunt implanted. I have had to have a couple of revisions over the past 10 years, but overall it's worked really well. I think it's important to remember that people that had success w/ shunts aren't looking for support here, so things posted are from people like you who are still looking for answers.

I also have concerns about getting treatment outside of my area. This facility is 3 hours away, so I'm very nervous about the distance. Unfortunately, they're the only "specialists" I've found that knew what was happening to me. I really don't know that I have any other options..I'll stay in a hotel there for a couple weeks if needed. My surgery isn't scheduled until April 26th, so I haven't gotten any relief yet. I basically have pain all the way down my spine at this point. They seem to think the overdraining has caused a Chiari Malformation and spinal discomfort, so hopeful most of it will resolve w/ the surgery. They'll replace or move the shunt if needed, but hoping to just replace the valve w/ something programmable. I get occasional tenderness at the site of my LP shunt and at the valve site, but usually don't notice them at all.

Thanks for your support!
Take care,
hug
Julie

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