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Originally Posted by BabyLeilani
Hello thank you all for all the support and advice! I feel like I can breathe a little and that I finally have access and support from people with what my husband is going through. And no it is such a big help thank you!
I would definitely love to get contact numbers for any good doctor in Virginia. We actually live in Northern Virginia (Vienna) so DC is an hour drive for us (traffic). Winchester might take 2 hours for us but we will definitely keep it an option. You're absolutely right, it is such a waste of time to travel that far to get treated so wrong.
As for how he got RSD, it started with a bone fusion that went wrong. The doctor hit a nerve during the surgery and that's when the migraines and burning started. He had to get another surgery done to fix it by a different doctor in North Carolina. It has been 3 years since he was first diagnosed with RSD and he's had 3 more surgeries. Nothing new there.
I am truly very sorry that you all have to go through this, but I guess that's what unites people. Thank you all again for the support! I did tell my husband everything you guys have said and I did read about ketamine. This helps with burning a little?
Thank you guys again!
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My husband also has RSD in his hand but is currently in at least partial remission -- no pain, thank God.
He had three nerve blocks which, at the time, provided very little relief but in the long run may have contributed greatly.
He was on gabapentin for several months -- eventually up to 3600 mg/day, but never felt that it helped his pain much. His pain doctor was fresh out of residency and had no clue what else to try for him. Randy weaned himself off the drugs and has not had a pain prescription since.
I know it's soon after his surgery but my recommendation, based on our experience, is to have him move his hand/fingers as much as he can stand. My husband went to PT three times/week for months, also did all those same exercises at home every single evening, and I believe that was key for his improvement. I also helped with his home exercises and I believe that my touching his hand and manipulating his fingers is one of the reasons he is not sensitive to touch. With my husband, it was always his tolerance level that decided how far we pushed his exercises, not some nurse. And his tolerance was different on different days. He'd have several good days and then a big set-back, so tell your husband to just keep working. Don't give up!
As the spouse of an RSDer, I know how it feels to sit helplessly on the sidelines while your loved one is in pain. I educated myself on RSD, searched and searched and searched for non-pharmaceutical options, and did *lots* of praying. The web is your friend! And this forum is a godsend. Even though Randy is in remission, I visit this site almost daily to keep up on new treatments, just in case... Unfortunately, I cannot say for sure what ultimately caused my husband to start improving. We tried several unconventional things post-gabapentin, but always in addition to the exercise. Hopefully you'll find a knowledgable doctor who will put you on the right path.
Please keep us posted. We're all rooting for you!