u/Tippileigh

I had a baclofen pump for a few years that had a catheter going into my spinal canal at L4 and I had it removed due to it causing a csf leak. I removed the pump, hoping the leak would resolve but it didn’t. I’ve had two fibrin glue patches done by Dr. Maya at Cedars Sinai at the direction of Dr. Schievink. My last one was in January and now it’s leaking again. Dr. Schievink suggesting doing surgery now but I really don’t want to so I’m electing to do a third glue patch. It’s basically been every six months that I’m having to get another one. I can’t keep doing this forever. Those of you that have had surgery, how many patches did you go through before giving into surgery? And how was your recovery?

I have my first treatment in a little over a week. It'll be done at an outpatient Infusion center/franchise. I've only been able to talk to their call center, not the actual center I'll be having my infusions done at. All they've been able to tell me regarding prepping for my visit is to wear comfortable clothes and I'm allowed to eat or drink whatever I want. I've been reading everyone's posts here and I see a lot about taking "pre-meds" like Tylenol, antihistamines, etc before infusions. Do you think it would be ok for me to do that on my own before my infusion? Or is that something they usually offer at your appointment? I feel so unprepared because of how little they've instructed me and I'm super worried about negative side effects because I'm usually one of those people that if there is a side effect to be had, I'll get it. :-/

I was recently approved for IVIG (Gammagard). My insurance approved the first month of treatment to be done at a hospital based infusion center but after that it must either be done at an outpatient infusion center or done at home. My neurologist would like to know which one I would prefer, but I’m not sure. Are there any major pros or cons to either one?