concerned with ??
 

I had another lumbar block yesterday. It helped for about 8 hrs (nice :))
That is a side point right now...

When they were putting in the IV on my right forearm I about died...it hurt so bad that I begged her to take it out. I had my eyes closed and she told me that it was already out. It hurt for quite a while (1 hr or so) quite badly. The site is still tender to touch. Thank goodness not as bad as the hr after. The IV ended up going in my left arm with no problems and didn't hurt. After she took out the needle she said "You have RSD right? Sometimes you are just more sensitive to pain and sometimes the meds make you more sensitive." I seem to remember this arm being a little more sensitive last week but NOT like this. Is this normal to have happen? What does the increased sensation to pain in my arm mean?

One more question...what steps have you all taken when the blocks all seem to work a max of 8 hrs? I got two dr.'s recommending the pulsed radiofrequency ablation....not going to do it. I have TRIED to get in with another clinic that I have heard does ketamine (outpatient) but I have played phone tag with them for over a week! I have given them my cell # and they keep calling my house. Then I call back and leave ANOTHER message...and it take them 3 business days to call me back! So frustrating. If it wasn't for really wanting to hear what they say I would not keep trying.

On a happy note, my tomatoes are getting ripe...picked a whole bowl of cherry tomatoes the other day and my kids are out of school for the summer so I can sleep in. :) I keep trying to find the good.

Anyway, thanks everyone.
J

You could try using a heating pad on the affected area for a while. Then if it is still bothering you apply a Lidoderm patch or some Voltaren gel. Don't use ice, it's bad for RSD.

I've had over 50 IV's started in my left hand during the last several years, 2 of my veins are blown.... for the last year it has felt like my RSD is definitely spreading over to my left hand from my the right side every time I get an infusion. But within a week after my IV's the pain in my hand and wrist always settles down.

Everyone is different. But I wanted to let you know what I've been through and that I've made out OK so far...good luck to you....Sandy

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

RFA is not supposed to be a good treatment for RSD. (to put it mildly)

I suspect that some people have nerve fiber that is less resistant to being damaged by sharp objects than others. I've had needles hit nerves twice now while doctors tell me it's impossible.

One was after I had the RSD and it spread to that site. It's not a particular problem so far as I can tell but it still feels like the needle going in from time to time.