If sympathetic lumbar nerve blocks are a part of your treatment- how often did you do them? A week apart? A few weeks apart? More or less?

I'm new here--I was only diagnosed one week ago and had my first block the next day and it was *amazing*. They said I had pretty dramatic results from the block and most people don't usually get that much relief from it. Well it has worn off and I want it back!!!! We think the RSD started a year and a half ago in my foot with a bad step on a sidewalk. I continued running 20-30 miles a week on it despite the pain because I was too busy to go to the doctor. I can only assume this somehow kept the RSD from progressing farther than it did. Finally after several misdiagnoses they found a fracture. Put off surgery for school and by the time I had the surgery I had already lost significant ROM in my big toe--and it became much worse after surgery. It was very hard for me to get off crutches and out of the aircast. I'll skip the zillion other symptoms to keep this shorter-- I had a significant limp and only small ROM of my toes before the block. I could run after the block and no limp. Last night I was screaming in pain from the vibrations of family members walking past the sofa where I was sitting... My next block is scheduled for TWO weeks from now. That seems so long right now. Am I being impatient?

I guess I'd re-zeroed my personal pain scale from the long term pain with no answers. Now my anesthesiologist rocked my world with that block and I want that feeling back so bad! I don't take any painkillers (oxycodone, hydrocodone, tramadol, advil, tylenol, aleve, etc.) because they offer no relief for me and only cause side effects. I couldn't tolerate Lyrica. I just started Pamelor last week.

I believe 2 wks is normal wait time between. I had 1 block and I was able to steam clean my carpets instead of my husband doing it. Imwas even able to walk around the block with my son. Not everyone responds the same way to the same treatment though. Rsd is a very different beast from most diseases. Its like comparing a dog and a lion. Yeah some can look like lions but there totally different. Be patient and don't stress.

Hello TBDE,

I wanted to share with you verbatim what my PM doctor wrote regarding the timing of Sympathetic blocks recently to my insurance company:

"Injection therapy in the form of sympathetic nerve blocks would be reasonable, necessary, and related to the collision. The sympathetic nervous system is in charge of things like blood flow and heart rate. To start, we likely would perform injections 1 time a week for 3-4 weeks. Thereafter, for long term CRPS patients, a reasonable frequency is 1-3 times/per year. However, given the relief they can provide, it would be reasonable, and necessary for Tessa to seek injections up to 6 times per year."

I hope this helps,
Tessa

Nice thanks Tessa. If I had a dr when this first happened that wasnthat good I probably would be in remission. I hope it does help.

Just speaking from my experience here. When I was receiving any kind of block, be it stellate ganglion, lumbar or cervical, I received them once per week. I was always told that they are more effective that way as you do not want too much time to lapse in between.

When I was getting stellate ganglion blocks when first diagnosed with RSD (in my face) in 1991, I was getting two per week. Those, in combination with meds, put me in remission for quite a while. Later, when I developed RSD in my hand and spread began, they tried them once per week, but it was a year after injury so they didn't help.

Good Luck!!
Nanc

Hi Allanira,

Try not to beat yourself up for the lack of care you got in the beginning many people even being treated early on don't always go into remission. I am thankful and lucky to have a brilliant team of doctors, however that doesn't mean I will ever go into remission in fact.. with type II it is very unlikely, unless the damaged nerves can be fixed and with CRPS already in play this is a huge gamble. My doctors have been very realistic with me they don't promise relief nor do they tell me it will get better, we just keep trying to find things that help some.. and when it begins to lose its effectiveness we try something different for a while, then later we might go back to it again. They also push me hard to reach deep down to find my inner strength and determination not to let this beat me - I've learned to appreciate this "push" very much. The grim reality is that most of us will never get better but, we can learn to cope and fight back the mental barrier to give up!

Keep fighting,
Tessa

...life comes with no guarantees. I choose an adventure with hardship/pain over no adventure at all – every time!