Hi I am confused on why since you are getting little relief your pain doctor keeps doing these blocks? Also so often I thought was not so good. I am not sure about the arm pain. I agree that my body overall even in non rsd areas is more sensitive.
It is great to hear you are trying to focus on positives.

My only advice is do not do the radio frequency abliviation as it can make the CRPS spread. I tried the procedure and it was the worse thing I have ever done as it caused my CRPS to spread and took what little function I had away. Recently I read an article by Dr Schwartzman and in his research he found that the RF Abliviation (and spinal cathadars) cause spreading. I would look for a new doctor.
Sarah

I agree with Sarah on this, but am only basing my opinion from what I have read.

That procedure sounds extremely risky!

The reason we are doing the blocks is because I chose to do 3 more. (I had done 3 already). He offered the rfa but I wasn't sure about it and wanted to research it.

I am trying to find a different dr. but I now have TWO opinions to do the rfa. That is why I am trying so hard to get in with this other clinic (even though I have heard that the staff is terrible to work with). I was thinking of actually walking in to the office today to try and make the new patient appt. Maybe that will get me ahead on the call back list?

Anyone who offers RFA for RSD doesn't have a clue what they are doing. I would find another doctor...honestly. RFA is truly bad news and has messed a lot of people up.

When I wanted to try ketamine I obtained the list of ketamine docs from the RSDSA and picked several docs off the list and arranged for appointments. Since I live in southern New England and there were no practictioners in the area at the time that offered ketamine, my husband needed to take me to NYC and South Jersey for consults. It took a long time for me to finally start receiving treatments, I was placed on a waiting list with for months with Getson's office (several months longer than they promised). After I had been with Getson for a few months a doctor began offering them here in my state, and I no longer had to travel out of state for my treatments.

I am glad that I started with Getson - I was fortunate to do the 10 day outpatient protocol, and then 2 days a week for a month.

You may not want to put all your eggs in one basket -by that, I mean don't ever rely on just one doc for your future. Everyone's protocol, staffing, and facility is different. It pays to do your research before your initial treatment. There is a huge difference between the high dose inpatient, and the various low dose outpatient infusions that the docs are offering. And depending on where its done, your insurance may or may not cover some or all of it.

Good luck, Sandy

Thanks Sandy.
Really, I just want to hear what they suggest. If it is Ketamine I need to think about that too. I am also going to look into Dr.'s along the way of our road trip.

J

You may want to call now to see what you need to do for an appt. Some docs may let you schedule one with just a referral from your primary care or PM doc. Getson requires a self-prepared package of infomation with all of your reports and a timeline, a very time consuming project because you need to contact all of your docs and get your office notes sent to you first. Once he gets your package, he reviews it and decides whether he will see you. It took several months for the whole process to play out...

I also made an appt with Dr. Schwartzman in Philly several years ago, but I had already completed a few months of ketamine treatment by the time that rolled around, so I cancelled it.

I hope you get into to see that doc soon. And I'm fairly certain that as long as you are responding (even if just for 8 hours) to blocks, there is still a chance that they could be effective in putting you into remission. It's when they stop working at all that it's time to stop them.

xoxo Sandy