I have had a couple of them and although I can't say that they were fun, they were not horror stories for me. Some pressure and pain as they go in but then once they were through it was not too bad at all.. they kept talking to me and keeping me as relaxed as possible and it is also a very quick procedure so it is over before you know it.
I was just like you, heard horror stories and honestly I was terrified! I just had mine done about a month ago and my experience was not bad at all. If you have Chiari let them know prior to starting the procedure. For me at least I didnt think it was painful at all, uncomfortable as mine was done under fluoroscope and I had to lay flat on my tummy with head turned to the side. The Dr. Who performed mine suggested I lay on my stomache afterwards not my back, which I had never heard of, but it worked.I did it, drank lots of water and didnt get the spinal headache! :) best of luck to you
I can't answer to your question in my case they didn't have me do it the big chief of Neurology said it was risky and unnecessary because my MRI is negative.
you should consider different factors, the gravity of your symptoms, the progression, the urgency.
the type of symptoms, whether they lead to auto-immune problem or direct infection of the central nervous system.
Hi...those with Chiari r told not to have the LP as it can go wrong IF u do not advise them of ur Chiari and they draw too quickly....
Many horror stories occur when someone was told that had to go for a LP and they went, they did not inform the tech of their condition and it was made worse as a result.
Being informed is the way to go, and I agree with Gio on this, why do they feel it necessary?
Did ur MRI show evidence of demylation?
If not, ur symptoms will be similar to MS, and MS can be ruled out by looking at ur brain MRI....if the MRI is iffy, then I understand this next step....
They said it was because my symptoms were non-specific and that an MRI is not a 100% diagnosis just like a spinal tap is not a 100% diagnosis.
Of course, not sure what they mean by non-specific when they're pretty specific to me. :-)
Did ur MRI show chiari?....did it show demylation? if it showed only one, chiari no need for the LP, if it showed both or just demylation then yes a LP is in order...
So many get mis dx'd bcuz the Drs do not understand chiari and the symptoms or will not accept them....
Just make sure u let them know u have chiari and if they do not know what it is, do not let them touch u,....ask for someone that does, JMHO
No white matter on the MRI but have positive Hopkins etc. MRI showed 6mm chiari, good flow, no blockage etc.
Hoffman's sign, not Hopkins.
So it does not mention demylation, and they r going the MS route neway,,...sorry, to me they r trying to make a square peg (chiari) fit into a round hole (MS)....JMHO
I don't like it when you mention a procedure that you need to have done and people over react to the procedure. When I had mine done, which was done by my NS himself it didn't hurt much. Just the poke. I think with this procedure it does help to take deep breaths and keep repeating to yourself to relax because it does help to get it over with faster. We are Chairians and we are tough and strong. Best of luck.
I have MS and Chiari. I had a spinal tap before I knew I had Chiari. I was really terrified but it ended up not being nearly as bad as I had feared. I totally agree that you need to make them aware that you have chiari!
Wishing you the best!
I have to get my records from the university today and take them to the VA and then find out. I told my husband last night after the horror stories I just don't know if I can do the procedure. I'm highly sensitive, it bothers me to even have someone touch me, a tag on clothes, the wrong type of material, little things are painful and so I have a very low tolerance for pain and am terrified and just don't know if it's worth it but I will wait and see what the doctor says.
If you deal with Chairi everyday just think when you go in there it will be over before you know it. Think of a nice place you really like to be and put that in your head, not the procedure itself. I know you are strong and you can handle anything. Keeping you in my thoughts and prayers.