Saleh,

Even though its been three years since my last LP, it still makes me quiver and feel quite sick at the experience you had.

Like both you and Heidi, my first ever lumbar puncture was incredibly traumatic and I hadnt even had a diagnosis at that point as I was admitted as an emergency case through A&E. The doctor didnt allow anytime for the anaesthetic to work, he punctured me several times also, ne never explained anything he was doing and I was both incredibly ill and petrified.

I put a complaint in about that doctor and was fortunate enough to have a lady called Sister Mary perform every lumbar puncture from then on. It was done elegantly and with grace and concern and after the first one she performed, I had every confidence in her from that point onwards.

It is an invasive procedure and when handled correctly doesnt need to be the traumatic experience that we are discussing. I'm hoping that any future LP's you have got an awful lot more smoothly than the one you experienced and well done you for complaining. Not enough of us do that these days and just accept what we are dealt.

That sounds awfull, I cant imagine how you feel. I've never had a LP, my IH was too far advanced they went straight for a VP shunt to preserve my sight. Plus the Chiari complicates LP's.

Let us know how the hospital respond to your letter. Fingers crossed you wont have this experience ever again! And by writting that letter you may have stopped this happening to any one else.

Saleh, thanks for sharing your story, and I hope the hospital had something to say for themselves.

My initial LP was awful too-- my ophthalmologist ordered it done by a doctor in one of those shopping center MRI places. I was laid awkwardly on my stomach, and despite having an MRI guide for needle placement, he still poked me half to death and had to re-numb and enter in a new spot.

It's actually one of my biggest fears about having symptoms again-- going back to the doctor and possibly another LP. I know there are far more skilled physicians out there, but still...it stinks.

Saleh,
I to emphathise with you, I had LP's done every 2 to 3 months or a little over 2 years. I also had some lying in the fetal postion and some sitting up. The very last one I had was by far the worst, a 30 minute procedure took almost 4 hours, the anth. poked me 10 times before deciding that he wasn't going to get it. I have pain now that sometimes I would swear feels just like I am being poked again, and then the muscles in my back stiffen so bad that it is hard to breathe. I has been 4 years since I have had one now, but as bad as it hurt, I would give anything to feel the little bit of relief that it gave me. Hope and pray that all goes well for you.

Saleh,

That sounds absolutely horrible! And to blame you afterwards is even worse - you were absolutely right in telling him that you were hurt, and that he stuck the needle in the wrong place. The doctors should be extra careful when dealing with people's spines, spine is a very sensitive place; has a lot of nerves to it and takes ages to heal (the cartilage and all the possible nerve damages). I hope you'll find a known and trusted doctor (like Christy) who'll perform all your future LP's (we should all have that).

Tanja

Saleh, I sympathise with you on this experience. I was admitted to hospital after a routine eye appointment last June and was told absolutely nothing. I was left to panic for 24 hours then sent for a CT scan.

After the scan I was sent back to my room and told nothing still until the next day when I was taken for an LP.

I had no idea what they even thought was wrong with me and had myself worried sick.

The first doctor made 12 attempts to do the job right and I felt excruciating pain each time and could feel him hitting bone or nerves, i'm not even sure which!!. He eventually gave up and went to make a phone call to see if it was absolutely necessary that I have this done. I was then sent to my room traumatized and I have never been more terrified in my whole life. An hour later a new doctor came along and had another go, 12 attempts later and he said he was successful.

Exactly one hour later I was discharged with no notes or explanation. I spent the entire summer ringing the hospital to find out what my results were and what on earth they thought I had. Each time I was told my consultant was on holidays!!!!!!

Eventually at the beginning of September my own GP made some calls and explained that I had been diagnosed with IIH and that he would push for an appt with a neurologist.

I have since been put on diamox and have had very few headaches. I occasionally forget to take my pills as I have never been on continuous medications before and when I do forget I feel headaches and the whooshing noise in my ears so I am taking from this that the diamox obviously works for me.

Now I have regular eye appointments at the hospital and there appears to be no change to the swelling on any visit. I did try reflexology before a recent appt to be told that there was possibly a slight improvement so I am going to book some more reflexology just incase!!

I'm sorry you had to suffer this but am so glad that I have found others who are experiencing the same as me. I don't feel so alone anymore as everyone looks at me and thinks 'there's nothing wrong with you!'

Stacey