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Originally Posted by yiisd
I have suffered from RSD for 8 years in the left wrist and right knee. I agree with your doctor who does not want to perform too many nerve blocks. Unfortunately I had a pain management physician who performed block after block after block. Now they do no good at all and in fact have made matters worse.
I am adamant about seeking out a pain management physician who is Board Certified in Anesthesiology, Physical Medicine and Pain Management. I finally found such a physician and he feels the numerous nerve blocks have put me in a position where nothing seems to work. Started Ketamine topically, but MS Contin is the only thing that really works.
I am 4 months post op for a three level Posterior AND Anterior Cervical Fusion. The neurosurgeon had only performed one other such surgery on a RSD patient....she is not institutionalized in a mental facility. I opted to go ahead with the surgery, though almost everyone on this site said "NO" "NO" "DON"T DO IT"! Well it has been 4 months and though I am not healing as quickly as someone who has no medical condition, I am doing OK. My RSD is NO WORSE and my Neck is MUCH BETTER. Basically I am saying " Don't listen to all of the alarmists ". Though your daughter hasn't had time to really get to know her body.....she will. She will learn when a flare is coming and when she needs to go to bed & rest to try to prevent a bad flare. Ice Packs, Anti-Inflammatory Meds, Physical & Occupational Therapy Help....but it takes time and it is not a miracle cure.
I wish you all the best and tell her to keep her head up. That is the MOST important thing. Take Pain Medicine so that she can remain active. FIND A DOCTOR WHO WILL GIVE THE APPROPRIATE PAIN MEDICINE TO HER. If she hurts frequently, I guarantee she will get worse. Lack of sleep makes it worse, KEEPING PAIN AWAY IS KEY to getting this under control - for now.
Good Luck.
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Thank you for your kind words and advise. Maddy has finished her 5th and last nerve block this week.With a Board Certified in Anesthesiology, Physical Medicine and Pain Management.The last 3 she has received in a month's time. She still gets great relief (2-3 pain scale) but they only last 3 days. She did some great PT/OT during that time but when the pain returns, it's so much worse she is nonfunctional for 2 days. The anesthesiolist wanted us to continue NB but we have decided to take a break and see if she can start going to school. After we said no more NB he said the only thing left is the SCS. We are not ready for that and he bascially sent us on our way.Her pain is high right now and we see the PM doctor on Tuesday, I aggree with you I need to somehow get her pain under control. The Doctor is furstrated just as we are, nothing seems to be working, She is on Lyrica, Conlidine, Trazadone and just started cymbalta. She stopped taking tramadol and norco because she feels they do not work. The PM Doctor does not want to give her anything stronger (opiods), I am affraid of her starting that too, but she needs some kind of relief. We go to the Boston Clinic at the end of Sept to see if she will be accepted into their program. I am also going to ask for a referral for a anesthesiolist to persure Ketamine or other infustions.
I am happy for you that your surgery went well and you are recovering, it may be slow but I'm sure you see the light at the end of the tunnel. You are a brave person to have had that kind of surgery with RSD and I'm happy for you that it did not spread. Yes, we are new to this and it is very, very scary. She is trying so hard to keep her head up, wants to finish her senior year and go on to college. I pray that will happen for her.