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 New to the shunt world.

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laurataylor92
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PostSubject: New to the shunt world.   Wed Aug 31, 2011 10:00 am

Laura here, :hello:
I got diagnosed Dec, 2010. I've been somewhat ok up until now.
I live in Oregon near all these really great hospitals and they are doing all this great stuff with IIH.
I have had 5 LP's. Just got one Wednesday August 24th 2011.
I had just gotten one the month before, the middle of July, and it was 37 while I was on my meds, and this one was 44 while taking Diamox. So apparently I am a risk and I need a shunt, now I don't really understand the shunt, I know what it does and I understand somewhat of what and where it goes.. I am getting a LP shunt and they told me it fails in 3 to 6 months but that this one is less invasive.. If after that they feel I need a VP shunt then, they'll consider it. Kind of confused what are they going to learn with a LP shunt and why can't I just get a VP shunt? I know that the VP one is permanent but 3 out of the 5 LP's I've had have been high. I am really scared. Any help would be awesome. I've done research on these shunts, still confused.


P.S.
Has anyone gone through this procedure?
Is anyone on diamox and it's just not working?
Also has anyone had a LP shunt and know why they do this one if it fails?


Thank you.
Sorry for the rambling.
Really scared..


Laura.

😕 nervous
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Heidi
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PostSubject: Re: New to the shunt world.   Wed Aug 31, 2011 3:52 pm

Hi Laura, the reason that an LP shunt is used first is usually because the brains ventricles are too small to accommodate a VP shunt. I myself started with an LP shunt, and had it for 5 years, it worked very well and I was symptom free. I have also had 2 others one was a Lumbar-subcutaneous (LS).

The first LP shunt was revised to a VP shunt when my ventricles were wide enough to have one. The only problem I had with the LP shunt was that it unfortunately caused a lot of pain in my lumbar area, so for me the LP shunt though effective was too uncomfortable for me to tolerate. This is rare but can happen.

The symptoms of it failing due to blockage or loosening are the same as that of a VP shunt, Headache
Vomiting
Visual disturbance
Drowsiness

You could also experience a stiff neck and shoulders.

I was in hospital for several weeks, but the length of your stay is dependent on your recovery and your Doctors/Surgeon. You will be sore and tender for a week or two where your wounds are but they will give you pain relief for that. The surgery sounds worse than it is and after being through it a few times myself can reassure you that you have nothing to fear at all and to take one day at a time afterwards.

If you want to ask me anything else please do.

Heidi X


Last edited by Heidi on Sun Mar 11, 2012 8:17 pm; edited 1 time in total
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laurataylor92
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PostSubject: Re: New to the shunt world.   Thu Sep 01, 2011 12:47 am

Thank you so much,
I am scared outta my mind right now.
I have to wait about two weeks to schedule an appointment, cuz having this disease seems to cost a lot more than I thought so I have to apply for FA. They told me 3 to 6 months and it will fail and then decide. In the beginnging of being diagnosed with IIH they said it was a slight possibility for a shunt, but now that it is becoming a reality it is more nerve racking. The doctor explained I will have like another LP and then they will insert it, I don't know.

Thank you so much I needed to know someone else has had this done. My doctors are being slow to actually do anything and I am so tired of the lumbar punctures and the spinal headaches I had to stay in bed for 4 days this week because they wouldn't do a blood patch and the pain meds never work, is that just me or do pain meds heavy ones just not work with this?


I am sorry you had to go through that.
I hope I survive this..

Sorry for the rambling Smile


Thanks again.

Laura. thank you
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Heidi
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PostSubject: Re: New to the shunt world.   Thu Sep 01, 2011 8:41 pm

I think with the pain meds it's trial and error to find the right one as we all have different pain threshholds, and the dose you are given. I am on staggered pain meds, three different ones and they do help collectively. When you do go for your shunt and to see your Neuro, talk to him about pain medication and which ones would be more effective for you, and ask him as many questions as you need to about them and about the shunt. We do have a guide booklet on talking to your Neurosurgeon and suggest questions you can ask him. I Have IIH Guide To Talking To Your Neurosurgeon



You most definitely will survive this, and once the shunt is working effectively, you should notice a big difference and be able to claim your life back with a few tweaks here and there. Keep telling yourself this.....what could be worse, continuous LP's or a shunt that is there and permanently draining the excess away without those dreaded LP's? Think in the long run rather than concentrate on the surgery itself, that's what I do. I remind myself that the surgery is to make my life better, more productive and most of all to make me feel better. I know it seems easy to say, but it does put perspective to the reason for the surgery and makes sense of it.



I know all this is very daunting, and we're here for you every step of the way. hug
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laurataylor92
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PostSubject: Re: New to the shunt world.   Thu Sep 01, 2011 11:56 pm

Yeah I hate being on pain meds because they either knock me out, or I lose control of my body so to speak.
I have tried talking to my neuro about pain meds and he said he doesn't think I should be on them because I don't need them. I mean this coming from the man who diagnosed me with conversion disorder and said I didn't have IH, so I don't really think I can talk to him about that. But maybe the neurosurgeon will help me out. They think that because I am so young that I just want to get high or I don't really have pain or I am selling them, which I have been told this before.

But thank you so much for your help.
I keep psyching myself out by researching and reading these tragic stories about the shunt but I need to stop and think positive.


Thanks again Smile


Laura.
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Milliejet1980
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PostSubject: Re: New to the shunt world.   Mon Sep 05, 2011 9:58 am

I've got an lp shunt and mine hasn't broke down after 3-6 months, it works ok xx

Don't be scared of the lp shunt believe me it's alot nicer than keep having lp's done xx I'm always here if you want to chat xx

Take care
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sammyjo
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PostSubject: Re: New to the shunt world.   Mon Sep 24, 2012 10:34 am

laura it is do good to know i am not the only one freaking out iam going throught a very simlair situation andd i havre been stupidly googling and have read so meany scary things i even watched a video of thee surgery on you tube and i am so scared i have stopped sleeeping due to the anticipation my surgery is 2 weeks away and i coulnt be more freaked out i hate LPs and know that the surgery has to be better but i am just not convinsed due to the fact that i am a control freak and being put to sleep i lose conttroll of the stuation x
thank you laura for being as confused and scared as i am x thank you
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medmisfit
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PostSubject: Re: New to the shunt world.   Mon Sep 24, 2012 10:30 pm

Oh no..ladies, stop the madness!!! LOL..there's a fine line between research and mania! I know there are a lot of horror stories and I won't pretend it's perfect, BUT I've had the same lumbar shunt for 10 years now. I have had to have a few revisions done, but they were simple out patient or over night surgeries. I've been able to maintain full time employment for the past several years and have a semi-normal life. Of course you have to learn your triggers and limitations, but it can be so much better than side effects and spinal taps. If you're surfing the web, I suggest you look for meditation tapes that help you prepare for surgery. I did that for my surgery in April and I was up walking in 6hrs..it was AWESOME! I know anything can happen and there is always a risk, but state of mind plays a huge part in recovery. I'd be glad to chat or answer any questions, if you want to PM me. Just please, PLEASE step away from the Internet before you go mad
👅
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Wylee
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PostSubject: Re: New to the shunt world.   Tue Sep 25, 2012 6:22 am

You are so right, Julie. Unfortunately, so much of the info out there is just frightful.

My lp shunt surgery went without a hitch, as was the recovery also. It was not a big deal at all.
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sammyjo
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PostSubject: Re: New to the shunt world.   Wed Sep 26, 2012 4:32 am

HI GUYS
sorry this may be the wrong section for my question i dont have shunt yet (get it in 2 weeks)
over the past 10 yrs i have had all the symptoms headache, dizzines, double vision, wooshy ears. you guys know the same old same old but recently i cant sleep i mean not even tierd but this is inharnsing all the other symptoms is my lack of sleeping a symptom \ side affect to IIH
Help
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