spinal tap gone wrong

Starli, thanks for starting this thread.

I have long been searching for an answer for my daughter’s situation concerning spinal taps. In October, she had to endure 4 spinal taps over a 6 week period. Each was extremely painful. I’m talking about screaming pain. She has been tramatized to the point that she told me after the last one that she would never have another – if it came down to that – just let her die. (She reminds me each time we have an appointment to see a new doctor) During the first two, I thought mabe she was so aprehensive that she was too tense, making it more difficult to obtain the fluid. (This is what the doctor told her during the procedure) The third one, she was given Adavan by iv. At the point when the doctor inserted the needle, she screamed and moaned – it was still painful for her, but thankfully she was druged up enough to not remember it. The final one, I stopped the procedure because no painkillers were given (doctor insisted a spinal doesn’t hurt), and he seemed to be having trouble – taking a looong time, ………and I couldn’t bear to listen to her crying.

Sorry this is so long, but on this forum, most have relatively mild to no pain during the procedure, and headaches are the most common side effect. Now, Jennifer has backaches and migraines. What physiological condition could be causing her excruciating pain during the procedure? How can we deal with it in the future? We have finally found a neuro that has “heard” of cidp, and acknowledges that in some instances gbs reoccurs. We are scheduled for a re-evaluation in a month, as she insists on her own evaluation – not those performed by others. I’d like to have some options to minimize the ordeal. Any ideas floating around out there? I trust the advice and kindness from all of you here more than the professionals.

Thank you all for being here!

By the way, what is a blood patch? :confused:

CD