Hi everyone,
sorry its been a while. This operation thing has been a nightmare. The rsd has jumped to the other leg. My foot on the original side is so swollen, purple, red you name it. Its on fire. So far i've had 3 epidural blockes in 3 weeks. I've had enough. They raised the doses on my meds but it feeling that much better. I hope you all are having a good day.

Love
sue k

Dear Sue -

That is terrible news. I am so sorry the blocks haven't worked and that your pain is as bad as it is. (To be honest, I'm a little surprised the blocks apparently had no traction whatsoever.)

Just so sorry this monster has presented you with its full fury.

Mike

ps Any chance that you could arrange to be tested for "TNF-a and its soluble Receptors I/II "? (As outlined in my post of September 13th, above.) If it's positive, you have a compelling case to be started immediately on ketamine, either as an outpatient or on in-patient receiving "sub-anesthetic" doses. But remember, if the blood test comes back as positive - which would mean that you have a fresh inflamatory process under way - treatment should/must begin within 12 weeks of the time of your surgery. And if your doctors aren't comfortable with ketamine, there are others that are. And as mentioned before, a couple of "low-dose" blocks with an anti-TNF drug such as Infliximab (Remicade) may be another option. (See my last for the one citation I could pull; PubMed lists other articles apparently on point, but oddly none of them have abstracts. Let me know if you want them and I'll ask a friend to retrieve them through his university account.)

Sue,

I know it's not easy right now and here you are wishing us all well and a good day.

I hope that the meds eventually help calm it down, but the RSD spreading to the opposite side is horrible...

Don't lose hope & hang in there!!!
Keep us posted.

Hi guys,

you are the most caring people i have ever talked to. Iam sorry i don't come on that often. I am so sick of this leg. I can't wait to start walking without the crutches. They were giving me 2 slb blocks a week, but my back is so sore they dropped it down to 1 a
week. Its starting to work a little bit. I start pt this week. I lucked out, they know about rsd. Marleen, i pray for all of us each day. We are all dealing with this monster and i always hope that you all are feeling somewhat ok my goal is to come here more often.
Sometimes i just don't have the energy to do anything. My husband got me a laptop so i can now sit in a more comfortable place.

Love you all
sue

Good to hear from you Sue.

What about Mike's suggestions regarding the infusions? He provided a lot of great research above. Have your docs addressed this yet? If not, can you find someone who will? You may not want to let this matter slide, since the "acute" stage is likely half over.

Take care of yourself, and good luck.

XOXOX Sandy