A little of this and a little of that
So a few things have happened these past weeks – I’ve been kind of processing the more important things, and so nothing has been reported on my blog.
First of all, I went to see my neurologist on May 4th. We didn’t change much because I was going to see my pain doctor the next week (and the pain doc and I are working on making changes). My neurologist and I did work out a way for me to have magnesium infusions. I first had magnesium infusions back when I was inpatient at Chicago. What was fantastic about magnesium was that there were no side effects but it entirely took away my headache pain. Fantastic, right? Right. Unfortunately, I haven’t been able to duplicate the results with oral magnesium. ANYWAY, back to the infusions. I was hoping I could use the infusions for those tough-to-break migraines.
And so I found myself at the hospital, in the infusion center on the next Monday. And somehow, for some reason, it didn’t work. I went with a normal headache – not even a particularly tough one. Soooo that is probably a no go from now on.
Then Friday the 14th I had my appointment at the pain clinic. I had a horrible night’s sleep the night before and so found myself trying not to puke in the office. The great thing is that I didn’t, and just laid very still. 
I wasn’t in the best of moods when my doctor came in (one HOUR later) — but we went onward and upward. We talked more about the RFA procedure, and I asked him where he was with the insurance company. He’s called 4x and said he waited on hold for 20 minutes or more each time. *sigh*
So we talked about where to go from here – he felt like if we went through with the RFA and I got 50% pain relief (best case scenario), we’d still be working on something else to take care of the last half. And so the last resort has arrived. He says that if I were his sister, he’d recommend going the route of the Occipital Nerve Stiumulator. This video explains spinal cord nerve stimulators, which are the same idea. Spinal cord stimulators came first, and then they started to be used for intractable headaches/migraines in the cervical area. We’re working on scheduling a trial, and from there the real decision making will begin. OR it might just not work well enough, in which case some other decision making will have to take place.
————————————————————————————————————————————————————–
In other news, we just got home from Paris a few days ago. I would’ve loved to have told you about it, but then I also am paranoid and don’t want people finding us and burgling us. So I will tell you now, after the fact. Spencer & I went to Paris – we were there for 9 days. We were able to go because he had a poster at a conference there; and after going to other very fun places in recent months, he has saved up enough frequent flier miles so that my ticket was paid for! Yippee! It was very fun, and I will post pictures/details soon.
test Filed under back pain/problems, headaches, meds, migraines, pain | Comments (13)13 Responses to “A little of this and a little of that”
Leave a Reply
Hoping you get good results from the stimulator trial! The occipital stimulator I have has been a God send.
My doctor and I recently had a good talk about oral magnesium vs. IV. They told me you would have to take so much orally to match the absorption rate you get from the IV administration that you would have serious diarrrhea issues. In a nutshell it’s not possible. I so, wish, though because it really is helpful and it would be nice to rely on something that doesn’t have any scary side effects.
How absolutely wonderful that you got to spend 9 days in Paris! Sounds like a dream.
Emily – I follow a couple of blogs whose authors have had stimulators, and they do seem to make a huge difference. Fingers crossed.
Diana – Thanks for that information. Makes me wonder why my doctors have been trying oral magnesium – they could’ve told me it wasn’t going to help (and why) and I’d have believe them!
I will be interested to hear how your trial goes. Keep us posted!
Em, on the RFA, which you inquired, YES! For me it has been a real blessing. Better than the cryo I had previously been treated with. I seem to get better and quicker relief. My docs have been considering me as an absolute candidate for the stim; HOWEVER, my ins. co. refuses to pay, stating it’s still “experimental” – point being, as the docs say, if the RFA and cryo are doing such an amazing job, the stim will do far better in treating the monster. My best to you. (and thank you for your wonderful comment on my entry)
Deb
Hi. Id be really curious to see what the effects of the Occipital Nerve Stimulator are. I am getting ready to have RFA within the next week or two….Im wondering if I should try a stimulator first?!?! I am a little skeptical about the RFA although willing to try anything for a glimmer of hope and less pain!
Jessica – I think the RFA is a more conservative treatment, and if your tests have been positive, I think you’re smart to go with that one first!
I know what you mean, anything for the hope of less pain.
Sorry about teh IV magnesium. It’s frustrating when a treatment worked once and then doesn’t work so well the next time around. I had the same experience with trigger point injections. Bleh.
Anyway, I’m glad you had a good vacay!!
And, if you’re interested, here is a really good site for learning about ONS.
Looks like my link didn’t work, so here it is for you to copy and paste.
http://onstim.blogspot.com/
Pictures!!! We need pictures.
Here’s hoping that your time in Paris was awesome and that the coming trial with the ONS will show great potential and that finally you will have great relief from the constant pain in your life. Love, Mom K
Paris?? Wow. Hope you had a blast!
That’s some heavy stuff. So sorry it didn’t work.