Very anxious!!!

Hi Katherine,

It's only natural you're going to be scared about having a repeat lumbar puncture if they couldn't find the right spot the first time. I'm 20st and was diagnosed with  IIH in March last year. I've lost count on how many LPs I've had. They don't all go smooth. The docs find it difficult to find the right spot on larger patients. There's a fair bit of palpating to find the right place for the needle. I've only had local anaesthetic each time, but I tell them to give me plenty. The whole LP procedure gets easier the more you have, because you know what to expect. Best advice ever is to stay calm, breathe slow and steady. If they have you on a bed with cot sides get them to put the side you're facing up so you can hold on to it,  you can put your feet against it too and kind of brace yourself tuck your knees up and stick your bottom out. I know where you're coming from, I had a bad LP where they caught a nerve and my leg shot out, it was like an electric shock. But you just have to put the bad ones behind you. I now have a VP shunt, not the nicest experience. It's my second. I had one put in at the end of April last year and had another put in 9 days later because the first one malfunctioned. And it looks like I need another as this one is not working properly. But other people have had the same shunt for years without any issue. Main thing is it saved my sight. You have to put your trust in the neuro team and relax, if you get yourself worked up and anxious you'll make it worse than it needs to be. The last LP I had was in May this year and it was the easiest yet. The neuro registrar was on it, hit the spot, took fluid off, was uncomfortable but I could bare it. Don't worry Katherine, people on here are always there to support you. Like I said, best advice I can give is to stay calm, being anxious will make it worse, I know because I used to be so afraid before a procedure, and now I know what helps me is being relaxed, it makes the whole thing go better. 

Good luck with everything, I hope they get you sorted x

Hi Katherine,

I wish I could give you some advise. My thoughts and best wishes are with you. Please keep me informed on how you go. The only thing I can say is I have had injections into the nerves in my back on separate occasions. Nothing to do with IIH, it was due to back surgery after a car accident. However the difference of being awake and fully knocked out was remarkable. It was no problem at all under sedation. However when having it done when I was awake was shocking. I think being unconscious would be a lot better for you especially after what you have been through.

Take care & good luck.

Hi, thanks for your replies. I had it done under light sedation yesterday but I kept having pain in my hips and legs so they give me some gas to put me to sleep, next thing I knew they were telling me it was done, the neuro reg said it was a tricky one, I think they had to go in a couple of times and possibly hit a bone because I'm extremely sore today. My opening pressure was 33, considering I only had one done around a week ago that's pretty high, however they've told me to continue the acetazolamide at 1000mg and put me on toprimate (unsure of the spelling) at 50mg at night, I have to go back at the end of September for more visual fields and eye scans, they said they would only consider the shunt if my eyes looked worse or if my central vision changed between now and then. I feel a little better today, no low pressure headache as yet, just a strange tingly sensation in my scalp. I'm just doing what they tell me to losing weight and taking my tablet as my eyesight is the most important thing! Thanks for your help guys! X