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

Hi , am so sorry about your daughter. I also have full body rsd-since 1996 but am in my 60's - also have trigeminal nerve pain. Please research the implant procedure for rsd patients. There is a lot of good information on this forum. I know ones with more experience than I will direct you to where to look. I know the head pain is horrendous. Keep posting and let us know how your daughter is. There are other parents who have posted here. Am sure you will get lots of good support to help YOU and help you support your daughter. loretta

There is a group on Facebook called the Coalition for Pediatric Pain. Lots of knowledgeable, wonderful parents like yourself that struggle with the same issue. I highly recommend touching base with them...

Generally, invasive treatments tend to make RSD worse in the long run gor many patients. There is a risk of complications from infection, spread, etc.

Have you considered ketamine?

All the best to you.

Sandy

Hi Mike, So sorry for your daughter's pain. I also have RSD and migraines. I have had migraines since I was about 8 years old and I am now 46. I have had RSD for almost 22 years now. I had two spinal cord stimulators (cervical and thoracic) implanted for RSD 1-1/2 years ago. They help me a great deal and did not cause the RSD to spread.

I have heard about stimulation for migraines being helpful and I know there have been discussions on here about it but I cannot remember which forum it was discussed in. Hopefully someone will chime in and direct you. Also, the great thing is that she can have a trial to see if it will help before going through the permanent implant. I had a trial for my two stimulators and it helped me with my decision.

I am sure you will receive a lot of great advice here that will help you guys with your decision.
All the best,
Nanc

Personally, I would try every possible non-invasive option first. Implants are a bell that can't be unrung with RSD at times... Is that 80% success rate in RSD patients or regular patients?

Has your daughter gone through an inpatient RSD program for children? As asked above--tried Ketamine? HBOT? Changed her diet? tCDS (under the care of a doc.) Etc. Etc. Etc.

It might make her better, but what if it makes her worse? There are many posting about horrific spread happening from implants such as SCS, as well as those that have had great improvement. The risks seem too great to me personally, to undergo, and I would be even more conservative in my risk taking in regards to my child.

Good luck!

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

Hi Buckhorn24,
I'm sorry that this does not address your question at all, but I have a question for you. My daughter also has CRPS and migraines and her doctor was considering a DHE treatment. However, she decided not to give her the treatment because a previous patient with both CRPS and migraines had a strong reaction to the DHE -it caused significant and lasting pain at the site of the IV for the infusion. The doctors believed that the irritation that DHE causes and most people at the infusion site was much more significant in this prior patient because of her CRPS. Although this prior patient had a good migraine relief and the pain from the infusion has slowly going down over a period of months, The doctor has decided she's not willing to risk of flare in my daughter. So I have two questions:

1) Did your daughter have any significant pain at the infusion site from the DHE treatments? Or any other significant side effects that might have been unusual and attributable to her CRPS?
2) Did she receive any benefit from the DHE treatments? If so, were they just not significant enough, or not long-lasting enough?

Thanks,
Lori

Post #10! So I can attach a link

LoriZ - My daughter had two DHE treatments in the hospital. The first last spring and it only helped for a few hours. The second in November and that only helped a couple of days. Both times they couldn't find the vein in her arm so after a couple of attempts they put it in the back of her left hand, and that took a couple of attempts to get it in. The fluids continuously dripped into her little hand for two days. They also gave her 37 botox injections in her scalp, forehead, neck and it was excruciatingly painful even with sedation. When she left the hospital, she did have so much pain in her left hand(ed) that she couldn't write her school work for a few weeks. But that did go away and now she doesn't have any lingering pains from it. The DHE and botox did not help her. Being that she's missed most of her classes since November with the migraine, we just pulled her out of high school and will do some home based schooling until she can get rid of the migraines.

We talked to the migraine doc at length, while he's never had anyone with RSD and migraines, he has implanted many spinal stimulators with no lasting rsd pain. He felt confident that it was a very minor incision and with proper care there would be no long lasting or permanent pains. We have to do something to stop the migraines, she rarely leaves the house anymore.

Here's the link for what she's having done in Dallas http://www.reedmigraine.com/procedure

Feel free to PM or respond with any questions on it.

Mike

Thank you. I hope you let us know how the stimulator goes if you decide to go ahead with it. You have my absolute best wishes for your daughter and your family.

Lori