Hi,

I had a this morning. I've been having them every 6 weeks since April so this was my 4th. It was a junior neuro doc that was doing it that I had never met before.

We didn't start off well - 1st she asked me how much weight I have lost to date. I said None. She told me that if I lost weight it would help the condition. I am healthy 9st 10pds my main neuro doc has always told me that I am a healthy weight and that I'm one of the unknown factors who get this condition as it is mostly common in obese people. I mentioned this and she just said "ye well even losing 10% of your body weight would help". I was so annoyed.
She also said my headaches have been really bad lately probably because I am dehydrated and not drinking enough fluids. I had to disagree cause I drink plenty of fluids and it has been very humid here for he last 3 weeks so that's what I would put it mainly down to and also this condition!!.

She then went on to do the LP. Straight away I felt she was doing it lower in the back than normal and I mentioned that I have a tattoo and it usually done just above this and other docs have used his as there guide. After 5 attempts in the wrong spot and causing me alot of pain she asked me to sit up I refused and said as I mentioned other docs have always put the needle in just above my tattoo. She was reluctant to do it but did in the end. The needle went in first time!!! so she caused me all the pain because she thought she knew better.

My pressure reading was 27 she said that's not high anything above 30 is. I said you must be mistaken as my last 3 Lp's have been 26,29,28 and I was told by my main neuro that this was high and anything above 18 is above normal and anything above 25 is quite high.

I asked was main neuro doc there as I wanted to talk to him but he was on holidays so I asked for senior neuro. The senior neuro came in and I complained about the way I had been treated and the comments that had been made by the junior neuro and the pain and discomfort he had cause me during the LP when I mentioned at the start he was putting the needle in he wrong place. Lp's are a horrible thing for us to have to through without the added discomfort from docs who don't know what they are doing. He was ever so apologetic and I also got an apology from the junior doc

I have never done anything like that before but I am sick of being treated like I don't have a clue. I am the patient I feel I know more about my condition that some of the docs.

Rant over - back in 6 weeks to go through it all again!!!

Thats awful! I'm sorry you were treated that way I'm glad you stood your ground and complained about the Junior doctor, we shouldn't have to be treated that way xxx

That sounds just too painful to me!! I hope the junior doc atleast numbed you up before each attempt? Can't imagine doing a lp without being numb.

Just out of curiousity, if junior thought your o.p. wasn't high, did he still draw off fluid anyway??
Does getting a lp every 6 weeks give you long lasting relief??

Hope you feel better.

I am so sorry you had such a bad experience but at the same time I am so PROUD of you for standing up and using your IIH voice. I hope all our other members take this initiative and use their IIH voice too, because for too long we have just sat back and left the Doctors to it, but we now know that not all Doctors are experienced and knowledgeable when it comes to this disease, and nor are they always right.

When you made a stand today you made a stand for us all! I applaud you for it.

That sounds awful. I think its really difficulty sometimes - we obviously live with this all the time but they are the professionals. I never want to be seen to question their judgement but sometime - like with your LP - clearly you have to say something.
It took my junior neuro 8 attempts before I managed to stand up for myself and say 'you have to stop - I can't take this anymore.' She was really apologetic and fetched an anesthetist to do it. Mind you he wasn't much better and it took him two attempts. They drugged me in the end and I slept for 4 hours straight afterwards they drugged me so much!
I have every admiration for you managing this every 6 weeks. I am glad you had the confidence to complain and get your deserved apology. Maybe next time they will listen to their patient.

Best wishes for a speedy LP recovery

Zoe x

Thanks everyone. I was very proud of myself . It was from reading your advice and replies here that made me stand up for myself

Love this forum its so helpful I'd be lost without it xxxxxxx



Wylie -The doc drained fluid off and lowered my pressure till 11!!
I get about 3 weeks relief after the LP's and then the symptoms come back. Diamox is no longer working for me so this is the alternative but its only til December and then I have a big review - most likely they'll start talking about a shunt

That's awful and exactly the reason I ask for no residents or students..you should have that right too. I am so glad you stood up for yourself and am also very proud of you!!! It takes a lot of courage and you seemed to handle it brilliantly!!

oh my goodness some doctors can be so rude - I complained and the neuro was rather rude to me but so what I am no longer going to accept it. Sometimes it is because we know more than them about our condition.

I am recovering from a lp on tuesday I had 5 different sight attempts with a total of 15 attempts and 3 different size needles and 3 lots of licnocaine (sp). I was so relieved when it was over so i know your pain. Still got sciatic pain today and hips are a bit sore and my back is bruised not sure i could go through that every 6 weeks next time it will hopefully be better,

well done
bonnie

I'm glad you stood up for yourself and, like Heidi said, for all of us with this horrible disease.

Just like everyone else, I am sick and tired of doctors treating us like this! I'm sick of these little "twig" doctors saying we are fat and need to lose weight.

If this is just because of weight, why don't other fat people have this condition and why do those people losing weight not see a difference or it gets worse? Sure losing weight might help (and it might not)....that is why this is "idiopathic". Maybe we just need to remind them what the word "idiopathic" means.

I'm afraid I would have not handled the weight comment as well as you did! I would've had an aneurysm... :Angry:

Here's a newsflash for the doctors [from me anyway]---> I know I am overweight, I have a mirror!