VP Shunt Dilema

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Tinkerbelle:
Well good luck with your decision! I hope you make the right one for you, if you get your shunt before me you'll have to tell me how it goes!

X

Nicisan:
Hi there,

I had a VP shunt fitted in August and I feel like I have got my life back. I was out of hospital 2 days later, back to work 3 weeks later and back to exercising 1 month later.  The only things I am not allowed to do is surf, swim in the sea or drive for 6 months due to the risk of seizures.  I have also had to give up competition fighting (I am a karate instructor) as I can't get punched in the head anymore which I actually used to enjoy! :lol But believe me when I say that these small areas of my life where I have had to make changes is so very worth it!

Do I worry about it blocking? Only sometimes, as somedays I even forget I have IIH! I am making the most of feeling well and if things change I will deal with them when they arise.  My vision wasn't too bad but I had headaches everyday which was really starting to get on top of me and I was having loads of time off work. (I won't go into all the other symptons I had as you know what they all are!) It took me a long time to decide to have the shunt but I wouldn't change that decision now.

Don't rush into the decision, make sure it is right for you and talk it through properly with your neuro, friends and family.

If you want to ask me any questions or have a chat then get in touch.

big hugs,

Nici xxx

ami_smith001:
Hi Karen,

I thought i would share my experience with you, i'm still quite new to the world of IIH as I was only diagnosed in May 2011 but I've had one hell of a few months since then. I've had several lumbar punctures and every time my pressure was around 30. Like you I think my pain threshold is quite high and I just carried on with my life as normally as I could even with the terrible symptoms of the condition. I was more than happy to live with the head pains and other symptoms while my neruologist tried using medicationhe Vs etc to get my condition under control. However in August this year my opthalmologist found a slight defect in my left eye due to the pressure on my optic nerve. We increased my dosage of the diamox and I went back a month later. I saw the opthalmologist on 12th October and tests found that my eyesight had got considerably worse. I'd lost almost 50% of my peripheral vision in my left eye and some in my right eye too. As these defects had gotten so much worse in such a short space of time I was rushed into hospital for an LP. The pressure was high again and the neuro suggested that I stay in hospital and be seen by the neurosurgical team just to discuss the surgical options available. Within a few days I'd seen the surgeons and we decided to go for the VP shunt. I had my shunt fitted on 21st October, almost 2 weeks ago and I feel so much better already.

As for the risks, i'm not sure whether your neuro is thinking about an LP or VP shunt but my surgeon told me that although the risks during surgery for the LP shunt are much lower the risk of needing repeat surgery and revisions is much higher than with the VP shunt. In terms of numbers, I was told that the chances of needing repeat surgery on an LP shunt as a result of blockage, infection etc is 80% whereas the chances of needing repeat surgery on a VP shunt is only 20%. I decided to go ahead with the VP shunt. there are pros and cons to both. Obviously the VP shunt is a form of brain suurgery, which is a frightening concept for anyone and as a result of that you will not be allowed to drive for 6 months due to the risk of seizures. (although my surgeon tells me that if the operation goes without any complications then the chances of seizures is tiny). There are risks of stroke and seizures but on the whole I decided that the risks of the procedure were not high enough for me to refuse, i'm sure this is different for all patients but I was told that I could wake up one morning completely blind. that concept frightened me much more than the surgery so I went ahead.

As i said I only had the shunt fitted just over a week ago so I cant tell you the long term effects but I've already noticed that my eyesight is etter, everything si clearer and the headaches are almost nothing. Since the operation I've had one headache which was nowhere near as bad as the head pains i was getting before. In terms of recovery I was home from hospital two days after the operation and within a week was feeling ok. I'm still getting discomfort in the adbominal wound and also have experienced some pains in my lower abdomen but i'm told this will settle down within a few weeks. For me this was so far, definately the right decision, i'm just hoping and praying that I dont have any problems.

I know I'm going on a bit now but just wanted to add that you are able to get pregnant with a shunt. When i was diagnosed with the condition my husband and I were trying for a bbaby, but we were told to stop as soon as I started taking diamox. My surgeon tells me that now I have the shunt I can stop taking the diamox (eing monitored by my neuro) and as soon as I'm off the medication we can start trying for a baby again. I have heard, and this is from a friend not from a medical professional, that in some cases women with a shunt are tld to opt for a c section birth rather than natural birth as the pushing of a natural birth can put pressure on the shunt. Like i said this came from a friend so you'd be better off checking with your neuro or surgeon.

anyway I've gone on enough but I ope you found some of my ramblings helpful. your story reminded me so much of myself I wanted to share with you and maybe help with your decision. Saying that it is completely your decision and I would suggest that you discuss this with family and friends, talk through any concerns or issues with your neuro and hopefully you will be able to decide easily. For me, when I was told I could wake up one morning completely blind, that was decision made, my eyesight is too precious to me.

Please do let me know how you get on.
Amelia xxx

Karen12:
Hi,

Wow, thank you both so much for sharing your shunt stories with me  :smile and its great to hear such positive stories about the VP shunt - which is what I will be getting if I agree to surgery.

I know this may sound silly, but I have this fear that my IIH is not bad enough to warrant getting a shunt and that getting a shunt will make me worse off as I might get bad low pressure instead!  I know that probably sounds really stupid as I have lost some peripheral vision and get daily flashing lights etc in my eyes every day.  The headaches can be bad sometimes but then other days I don't get any!

But I think that maybe I just dont realise how much better my life could be if I had a shunt that worked properly and took away the headaches, the annoying flashing lights and constant worry I have about going blind!

I think I am gradually getting close to making a decision ..........

Karen x

ami_smith001:
Hi Karen,

It's not silly, I completely understand where you're coming from. When I was waiting to go for the operation the most difficult part was getting my head around the fact that I was going for brain surgery when I felt quite well in myself. It seems such a drastic step to take, particularly if your symptoms are not affecting you too much. All I will say is that I don't think i realised quite how unwell I was feeling before the shunt operation. In the last two weeks I've felt better than I've felt in the past two years but I didn't realise how unwell I was until all of the syptoms were gone and I started to feel "normal" again!!

I just got to the point where the posibility of going blind was getting more  the shunt is and more likely and when I looked at the risks of the surgery and the life I could lead if all goes well I had to go for the operation. But everyone is different and I don't want to influence your decision. My surgeon told me that on the whole shunts are not good things, they do go wrong and there can be problems but I also know people who say that the relief they get from the shunt is well worth going through the tough stuff.

One last thing, I had some good news today, not sure if it will apply to all areas but my local authority have offered me a free bus pass for the 6 month period that I'm unable to drive. Maybe something worth looking into if the not being able to drive is something you're concerned about.

I really hope things go well for you. please let me know!!

Take care Amelia xx

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