Hi everyone, hope you're all doing okay.

A while ago I posted about how I was due to get "a shunt within 4-5 weeks". It has been nothing but a struggle. I sit here, still with no shunt and on no medication, my vision deteriorating and my symptoms worse than ever. I also now use a stick to walk as the botched Lumbar Punctures have damaged my back and legs (even though the Docs wont admit fault).The NO and the NS both went on two week holidays and the Secretary lost my paperwork for a few weeks. I've been shuffled between doctors and surgeons and told about 10 different things by each. At first I was told I was getting an LP shunt, then the NS asked if anybody had considered giving me a gastric band (I weight about 260lbs) and told me that he didn't like the idea of a shunt because it's risky (duh) and that he'd have to get a general surgeon in as well. He didn't give me a definite answer and said he'd contact me, which he didn't. I pestered my NO until I got an appointment and he seemed shocked that I hadn't already been given the shunt. He contacted the surgeon who agreed to do a non-adjustable shunt before the end of May. Now however, I have a throat ulcer and think that they will probably postpone the surgery because i'll be too difficult to intubate and they'll be worried about infection. It's just been a daily struggle with the most unhelpful staff in the world. At my wits end.

I was told because I have such bad headaches and LP's don't give me any relief, that I might just have to accept that fact that I could suffer from a chronic constant debilitating headache on a daily basis. I'm also worried about the shunt doing more damage to my spine, but I need the shunt to protect my vision which is deteriorating pretty quickly. It's a catch 22 really, I'm out of options.

I've heard horror stories about the non-adjustable LP shunts and overdraining, acquired arnold-chiari malformation and back/leg problems. I seem to be the patient that if something can go wrong, it will. Just feeling completley defeated at the moment.

Does anybody have a working non-adjustable LP shunt that isn't causing too many problems? Does anybody have/had one that has caused lots of problems? Any answers are appreciated. Just want to know as much as possible.

Thanks again x

I am so sorry to hear you're still struggling with this & can't believe nothing has been done! I know Heidi has referred people to PALS, so I wonder if they'd be able to advocate for you..worth a shot I think.

I have had a non-adjustable lumbar shunt since 2002, but I can't beleive they're considering it with the programmable options available now. I didn't have an option back then, but would definitely want someone willing to discuss pro's & con's of all that's available now.

I personally have had three revisions. One because catheter came undone, one to add valve because of overdraining, & my last one a couple weeks ago because valve wore out & catheter needed replaced. At least they were able to offer me a programmable valve this time. I have to say the surgeries were all fairly unintrusive, but thet were still surgery. I definitely feel good when shunt is working & have been able to maintain full time employment since back to work in 2005.

If I were you, I'd definitely be concerned about vision loss & damage to legs/spine. I'd definitely make sure to have candid conversation with surgeon & know his reasoning before I agreed to anything. If it's just the weight issue, there's plenty of documentation out there debunking that myth. I have actually gained the majority of my weight since diagnosis & know several others with same experience. Weight loss can help, but there's no time when your vision & physical functioning are in danger.

Be strong & advocate for YOUR best interest..please take care & keep us posted!

Julie

HI

my first shunt in 2007 was unprogrammable - it stopped working - they never told me why

it got replace with a programmable one - but I got a serious infection and was in intensive care and so the whole shunt was eventually removed

In 2009 I had another porgrammable LP shunt fitted. it stopped working September 2011 - so they tried to adjust it January this year but my valve is broken.

I am going in to hospital next wednesday to have my valve replaced.

This is my experience with Shunts - when they work life is great

Gemma xx

I also have an anti-siphon, programmable shunt valve. Having a non-programmable one was never discussed. In the U.S., I think that is now considered out dated. Lillith, do try to stand your ground. Insist on a programmable valve so that you won't have to worry about over draining. Maybe the others from the UK will be able to help you through your medical system. It is so confusing to me.

So sorry to hear your experience.

Medicine and surgery has come on leaps and bounds in my lifetime. But what I always struggle with is how varied treatment can be determined by what hospital you are under.

My consultant won't use shunts with valves, the only alternative he has offered is to remove the thing.

History has taught me, you know your body best. I was in a leg brace and told there was nothing more that could be done for me, a bit of study and i found a lovley surgeon who performed surgery on my ankle and got me walking again.

Thats what I love about sharing our stories. There is hope and maybe you need to seek another opinion?Take care in the meantime and stay strong x

Thankyou for all your answers! I was called in for a CT scan on Friday morning and then on Friday evening I got a call from my Neuro telling me that they were going to do a programmable VP shunt instead of an LP shunt (which they had been telling me I'd be getting for months). I'm much, much happier about this.

I'm getting my pre-op done on Tuesday and going on again Wednesday morning to be admitted for surgery. I know all the ins and outs of the surgery and what to expect and I know that the surgeon will need to shave a part of my head, but I'm curious as to how much will be shaved and where abouts on my head. If it's not too much then I'll just comb my hair over but if it's a significant amount I think I'll just shave it all off and let it grow back all together! Either way I'm just so glad I'm getting the programmable VP shunt and that I'm getting it done finally next week! It most likely wont be the end of my problems but it's definitely a step forward!

Thanks x

My first LP shunt was unprogrammeable and I had it for 5 years, but because of the damage from multiple LP's the shunt damaged my back, left me weaker in my left side, and also gave me restless and shaking legs. I am one of the few who cann't tolerate an LP shunt. My revision to a Vp shunt in 2006 was a programmeable one, but it blocked within the first 6 weeks.

I've had several revisions since then and the VP shunt I have now is not programmeable and it works fantastically well, but my surgeon set it to a setting for IIH, rather than for hydrocephalus which is what they were doing before under the shunt management criteria.

I still have to walk with a stick because my mobility has been irrepairably compromised but I take Gabapentin, Baclofen, Diclofenac and Amitriptyline which has helped enormously.