Quote:
Originally Posted by Buckhorn24
My 14 yo daughter with full body rsd has had severe migraines and nausea for several months, had a few treatments of DHE in the hospital and missed most of her freshman year. Her neuro suggested a procedure of combined occipital nerve/supraorbital nerve stimulation. Basically implanting a battery pack in her hip, running leads up the back, neck, side of the skull to the forehead delivering a charge to stop the pain. Claiming an 80% success rate. First step is to test it with leads in the forehead and external battery pack, then permanent implant if it works.
We have to do something, between the RSD and migraines she rarely leaves the house anymore. At least if we can get the migraines gone, she can usually deal with the RSD and make it to school most days.
But, I'm really concerned about the incisions to implant the battery, runnning leads under the skin all the way up her back, and how it's going to impact the RSD.
Anyone hear of this process? Any thoughts on the surgery and RSD?
I can't post a link yet, but if you google Reed migraine you'll see the procedure.
Mike
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So sorry about what your daughter is going through. You've sure come to a great place for support tho.
Have you checked out the Trigeminal Neuralgia forum? Here's the link to take you there.
http://neurotalk.psychcentral.com/fo...aysprune=&f=26
Look in the section at the top of the forum, called the 'Stickies'. There is alot of research and info regarding SCS for head, face, neck, etc. for a variety of types of pain.
A good friend "Burntmarshmallow" is very helpful on the TN forum. You probably have enough posts to be able to "Private Message" now. Feel free to send her a PM and she'll give good input on whether or not this may be something for you to check into. (I'm not certain this is what your neuro is talking about, but it's worth a look)
I know the procedure sounds pretty creepy. If your neuro is recommending this, it's sure worth looking into (if you feel good about him) and definitely check into possible RSD spread with a procedure like this. There have been many of us get the SCS with good results without having spread of RSD also, so it's certainly something to put alot of thought into.
I pray that your daughter can get relief from this awful pain, by whichever means possible.
Caring,
Rae
