I've had a diasatrous experience with the effects from a lumbar puncture, and wanted to know if anyone had any information that might illuminate things for me.

I had the LP done as the last diagnostic test before getting a ketamine infusion - I wanted to make sure I had every test done I could have before taking that plunge. My RSD symptoms had begun six months prior following a sugery, and I had some fears about ketamine. Anyway, three days after the LP, a terrible headache appeared, along with what felt like my spine being ripped out of my body.

After two and a half weeks of this, I had a blood patch done and felt about 80% better. But three days after that, it felt like a lightning bolt struck in my brain, resulting in extreme dizziness and nausea, with continuous muscle spasms in my right glut and a constant pressure on the top of my skull, along with a choking sensation in my throat.

I've been checked for a stroke, for a CSF leak. Apparently neither is present. Things have settled just small bit since they first appeared, and the symptoms get much worse with any physical activity.

Could my RSD-symptoms have spread from this, and in this way?

Welcome dshue,

I'm so sorry you are going thru this difficult, horrendous disorder and to add to that, this event. My RSD also followed surgery, the next day swollen arm and then frozen shoulder. I did have stabbing pains thru my back right away, but the headaches, swollowing,choking sensation didn't come for much later. I also had spasms, jerking, and those frightening lighting bolt strikes thru my brain, that would wake me from a sound sleep and lift my head right off the pillow, very scary. The only thing that brought these sensations and violent events under control and completely stopped them was Neurotin-3200 mg for me . for 3-4 years and then switched to Lyrica for a year or so and now just this week slowly have gone off these meds with no reoccurence. I have full body RSD 12 years now. Have had every brain test imaginable after passing out for over an hour, (low blood pressure) I hope this gets under control. I know they were scary for me, usually at night while sleeping or laying down resting watching tv. I believe others have mentioned they had their symptoms while relaxing. Sorry, that is all I remember. I have not had ketamine or blocks. I wasn't diagnosed for 4-5 years. Let us know what you find out. This is a wonderful group of caring friends. Take care, Loretta Jewell

I'm so sorry that you are dealing with all of this and really hope you get some answers and pain-relief real soon!

Unfortunately, from what I have been told and heard from others, RSD can spread even from just a simple injection!! I haven't had an Lumber Puncter as they are really a "diagnostic tool" for RSD but have had a Guanethadine Nerve Block and it made me SO much worse and left me wheelchair bound for 13 months!!

It is extremely important that your Doctor knows about RSD when having even just an injection as there are precautions that need to be put in place to try and prevent any spreading and complications. From what I have been told, most doctors use a very fine needle and it is very important that they give you plenty of Anaesthetic to try and help.

I hope you get some answers soon and i'm sorry that you are dealing with all of this. If you ever want someone to talk to, please know that I am here for you as I DO understand!!

Please keep us updated when you can!

Hi
I'd hesitate to just assume that this is a CRPS spread although it is always possible. Sometimes (a third or more) blood patch is needed to repair the effects of the CSF leak/pressure drop that causes the horrific headache and after effects. It might just take time or it may be that there has been some other issue with the LP such as incorrect placement of the needle. It can take weeks for the LP complications to subside in some people.

Can you do heaps of LP research on the net while you are "recovering" to see if you can find any post LP symptoms that match yours and link them to possible causes? That way you can press your docs armed with knowledge and confidence rather than from a position of relative weakness? Either way I would be pushing your docs if you don't have a steady improvement.