Some of you have asked for brain updates & it seems fitting to discuss now as the 9th anniversary of my second brain surgery. [04/08/13 & 04/19/13]
I tried to find my last post but I suspect it’s one that accidentally deleted (if I find my original note, I’ll repost). I can’t remember what the last thing I’ve posted about brain stuff so here’s a recap: My neuro-surgeon (not brain surgery but the TOS 10/31/17) helped us find a pain management neurologist. That actually took about a year of going to see someone, only to have them say they couldn’t (or weren’t qualified to) take my case.
New neurologist took over all my meds (except thyroid). Took me off several and had me start taking Emgality. It’s actually a migraine medication. It’s 3 injections given at the same time, once a month. That’s been fun! NOT! Kudos to Jeff though for taking on the task of stabbing me in the arms 😉 I still don’t really have much feeling in my left arm so that helps.
I’ve been taking Emgality for about a year. It’s been so much better.
In January, he thought we should try to get off ALL my other meds (again, not thyroid)… one at a time though.
THE PLAN WAS: 1) leave brain pressure meds alone for now BUT 1a) schedule an MRI/A to see how the arteries are doing. To the best of my knowledge, I’ve never had one of those and the last MRI/V showed the clot remains on the left side, completely blocking my jugular vein. [You can go to the main page of my blog to see pics of the clot]. and 1b) schedule a ? spinal tap type procedure to check what my brain pressure is before adjusting or discontinuing brain pressure meds. and 2) stop taking the pain/nerve meds I was taking 3 of. and 3) NO SCUBA until we get the results of all this figured out.
Last month, doctor appointment I told him that it took about 4-6 weeks to wear off… and I stopped sleeping very well so he decided to go back to ONE of those nerve/pain meds, and that has helped.
I had the MRI/A which… yeah, means they had to try and stick me for an IV for the contrast. Took a little bit but she actually managed to get it on the second attempt. I’m glad I already don’t really remember that the whole MRI was awful & I was in tears the entire time. The results have been posted in my portal but I don’t talk to the doctor for a couple more weeks to get the official results. [NOTE: I can read & see enough that my jugular is still totally blocked. The rest is kinda different info & images, so once I get it explained to me, if I can figure out the imaging… I’ll post some pics. I have them, I just don’t know what I’m looking at 😉]
Except THIS one… I may make this my callerID photo 🤣🤣🤣
I’m not sure when we are doing the spinal tap thingy… I’m not looking forward to that. Although, supposedly a side effect of it is… it could relieve pressure & possibly end headaches (undetermined amount of time).
He also glossed over maybe trying botox injections in my head……. YIKES! I know nothing about that so if you have any input, holler.
Overall, I’ve been doing well. [I will always have the short memory loss & confusion AND probably confused numbers, colors & dates] Every once in a while my head pain still gets me & I’m still hypersensitive to sound. BUT… I mean hey… I got on a plane & left the country… to me that’s huge! However, new pain neuro is striving for ZERO pain.
Wish him luck! 😉 I’ll keep ya posted.