Having a pretty rough day today. Started out with a doctor's appointment and then came home to my dog (who I've had 18 years) unable to walk and in pain...so we had to call the vet and will be saying our final goodbyes to her tomorrow...so hard.

But I'm sort of reeling from what the doctor said at my appointment.

First...the results from the skin punch biopsy show that in addition to me having RSD...I also have small fiber neuropathy. He believes this was either cause by my fall off the ladder or exacerbated by my fall off the ladder. I have to follow up with a neurologist to determine if there is another cause and what to do for treatment.

Second...the doctor said that after all the tests and failure of medications to give me sufficient relief...he wants me to get a DRG stimulation unit. The success rates he quoted for this new stimulation unit were impressive I have to admit. After 10 months of barely functioning due to this increased pain since the fall off the ladder...I am seriously considering this. He wants me to get two. First one would be for my lower extremities (left leg) and then early next year a second one to treat the upper body (which is not yet FDA approved but he's expecting it to be later this year or early next year).

What are your thoughts on this new DRG stimulation? Be honest...I've always been pretty skeptical of SCS for RSD treatment based on what I've heard...but it sounds like the successs rate for this is higher and has better long term results (but they've only been doing them in England for 4 years so no results longer than that to look at).

Dear Catra,

First, I am so sorry about your beloved dog. My thoughts and prayers will be with you tomorrow. It is painful losing a member of your family no matter how many feet they have or whether they have lived a full life. We lost our little cairn terrier this Spring at age 15. I felt really rotten and very tender for some time. Be easy with yourself and take the triggers in stride as things remind you of your pet in the days to come. We still get worked up at my house and it's been 6 months.

Second, I am attaching a summary of research by Dr. Louise Oaklander a nerve and pain specialist at U Mass who found that a percentage of patients with CRPS have SFN. The damage is found in several types of neuropathic pain syndromes.
Study Confirms Nerve Damage in CRPS TYPE I - American RSDHope

On the DRG stimulator - I have never tried SCS and due to my crazy tendency to create massive loads of scar tissue I have avoided even doing blocks. However, I agree the research is much more promising as far as success rate and coverage. If I was going to consider this type of option DRG stimulation would be my first choice. It seems much more specific. I would be a little more leary of the upper back personally, things get rather complicated in that area and without the clinical experience with it nationwide I would want more info or international studies on this use of it.

Does your doctor have any thoughts on correlations he may have noticed over time about what types of patients respond well to it? There are predictive qualities that correlate with SCS response.

Ultimately I believe you have listen to your own wisdom on what is best for YOU. Having made some of my own difficult treatment decisions I know a leap of faith is sometimes required. Be still, pay attention to your cues and whatever affirmation God or the Universe may send and follow through on what feels right. You have our support no matter what you decide.

Sending Hugs and Healing Love

I'm so sorry about your dog, catra121! I know what it's like to lose a pet. Hang in there!

Is this like a regular neurostimulator? It is, isn't it?

I would be hesitant, but that's me... In this country it's only given if medication is insufficient relief and if that's all been tried and tested out *fully*. They always go the medication route before doing something as invasive as this. I've never heard of them implanting two, either. That's crazy talk IMMHO. My God, and if it's not a rechargeable one, the batteries need replacing in x-amount of years (which means surgery *again*). So it's not as "easy" as some docs make it out to be.

Catra,

I am so sorry to hear that you had to say goodbye to a long loved member of your family. After 18 years, I can imagine how difficult it is to let her go.

I have not done very much research on DRG stimulation. Littlepaw mentioned it to me just before I went in for my SCS trial and that was the first that I have head of it. Although I have had a hard time with my recent SCS trial, what I have read on the DRG unit, it sounds a lot more promising. If I had heard more about it before my trial, I would have looked into it more to consider trying it instead of the SCS.

Honestly though, after going through with the SCS trial, I am finding myself very hesitant about any procedure that may cause spread, a flare, or any other complications. I do think it is worth doing a little more reading on. I plan to. If I find anything interesting, I will definitely share it with you.

Whatever you decide to do, I will give you my support along the way.

Many hugs to youas I hold you in my thoughts and prayers over these next few days.

This treatment is very similar to traditional SCS but there are differences and the DRG treatment is specifically used to treat CRPS. Here's what I read on the Ainsworth Institute site that explains the difference in the unit:

The idea of DRG stimulation is nearly identical to traditional Spinal Cord Stimulation (SCS), with one very important difference – rather than placing the leads in a general region of the spinal cord, DRG stimulation targets the specific regions of the cord that are transmitting the pain and shuts down those painful signals directly by placing the leads DIRECTLY OVER THE DRG’s. The FDA clinical trial (ACCURATE Study) showed that electrically stimulating the ganglion offers patients better and more targeted pain relief from Complex Regional Pain Syndrome (CRPS).

It is pretty new...so 4 years is about as far as the research can go back for people with this unit. However...among CRPS patients the results seem VERY encouraging and much better than with SCS.

After thinking about it this weekend I have decided that I definitely want to move forward with this treatment. I just know that I cannot continue the way that I am. I have a 21 month old daughter to take care of and I think about what a difference it can make in my life and in hers. Even if the thing only works for 5 years...that would be 5 really good years while my daughter is young. The SCS had too many risks and bad results for CRPS patients...but this DRG treatment really is a huge step forward for CRPS treatment and the risks are more in my comfort zone. There are still risks...still negatives...but I'm willing to take them for the chance at getting better.

Now...it's a waiting game. I haven't heard from work comp yet on if I can get the bloodwork done and see a neurologist for the small fiber neuropathy. I think that will be the next step before I hear anything about the DRG treatment. But I at least feel like a bit of weight is lifted off my shoulders having made my decision and knowing that there is some hope that I will be able to function again like a normal human being.

And...for those interested...my dog passed away Friday morning before I took her to the vet. I was up with her all night and she passed away peacefully with me beside her. It was hard and I'm still grieving and crying constantly...but I am grateful that she went that way instead of at the vet.

You gotta do what you gotta do. I hope it all goes well and according to plan!

So sad to hear about your dog.

So sorry to hear about your pup Glad you were able to say goodbye to her at home instead of the vet.

hi catra. i am so sorry about your dog. my thoughts and prayers are with you. as for drg, i have never heard of it, but if you decide to get it done, i hope it helps ease your pain. love and hugs.

Thinking of you and sending hugs. I know how rotten you must feel right now. It is good you were both able to avoid the stress of the vet and she passed peacefully where she was loved best of all.

I stand with you on your treatment decision and will send many healing vibes when you move forward. Sometimes we do indeed have to take a chance to get better. We will all be hoping for the best possible outcome for you and your future. Please let us know what happens.

Thanks everyone. I'm sure this will be a bit of a waiting game now with work comp given how expensive this treatment option is...but I'm pretty confident that this is the treatment route I will take. I'll post more about it in a separate thread once we move forward with it.

I appreciate the support and love from everyone during this difficult time...and through all my difficult times in the past. You guys are always here for me...thank you!