Sandy,
I know Dr Getson but i didn't know he did rsd. I thought he was only a family physician. His kids were at the summer camp I work at in the summer. His son was in my class. It's a small world.
Is it hard to get the insurance companies to agree to ketamine infusions? I couldn't even get physical therapy covered. I will look into him though.
Thanks,
Lupus

Dr. Getson is one of the finest RSD docs in the country, and you would be blessed to have him care for you!!

It can be very difficult to obtain insurance company coverage for ketamine, and Getson's average per day (in my experience), was $1700.

My RI United Healthcare paid for a portion of my charges at Getson's, but not all. He does not accept insurance as payment in full. Eventually, the WC Court in RI forced my insurance company to cover my expenses. Otherwise, it would have been prohibitively expensive for me to continue the treatments at his rates.

I am receiving ketamine in RI with Dr. Chopra so I don't have to travel out of state anymore. He is also a great doctor. But Dr. Getson was the doctor that correctly diagnosed me, and wrote an awesome report for me, and first treated me. I will always remember him for that. He is truly special in my book...

Good luck to you. BTW, I am from Haddonfield, but my parents live in FL and at their shore house now in the summer. they came home home early in 2010 so that my dad could drive me back and forth to get my ketamine in Marlton.

Keep in touch, and let me know how you make out! sandy

Lupus,

Dr. Getson does Evaluations on Thurs., he used to charge $400. It will be the best $400 you have spent since you got sick.

Getson will be able to discuss your insurance and what is covered and what is not, etc.

Sandy

Hi Lupus,

I know where you are coming from with pain so bad you could vomit. No matter how bad things get please stay away from Sympathectomy. They are like SCS for CRPS in that they don't work and can make you worse.

I too had a spinal cord stim that worked for a little less than two years and then just stopped working. Very long story short I now have severe CRPS at the SCS surgical sites as well as spread to my wrist. How long did your stimulator work? Did you have any spread to the surgical site?

Please consider tDCS-a great alternative to more invasive procedures! The tDCS ended the spread to my wrist and the wheelchair that the spinal cord stimulator put me in is now a thing of the past!

Thanks cprsjames,
My stimulator worked for five great years. Yes, the CPRS has spread to the surgical site where the battery pack is in my side. When it first stared to burn I thought the battery itself was leaking but after xrays and tests on the stimulator my pm dr said the CPRS had spread to me side. It is the first time my symptoms spread. It really scared me. Where else will it spread?
I read about the tDCS but I am confused about how I get started. I know my insurance will say no but can I get the equipment on my own? Is it expensive?
Thanks,
Lupus

The equipment is not expensive (relatively speaking). Using the sites that are listed on page 2 of the tDCS thread I was able to get everything I needed for treatment at home for about $300 (and that's without any assistance from insurance). All I needed was for my doctor to write a script for the tDCS unit itself. Everything else could be ordered without a script.

Spinal Cord Stimulators and CRPS Spread
 

Hey Lupus,

So sorry about your experience with the Spinal Cord Stimulator. You were very fortunate to get five years out of it. With CRPS 3-5 years is typical with many SCS failing sooner.

Sadly, with CRPS, SCS frequently cause spreads particularly to the surgical sites. I still have mine in and with severe CRPS at the surgical sites, which is also a common side effect with CRPS, I am stuck with the implant for life. Please consider removal very carefully as I have been advised by four doctors that taking the SCS out could cause full body and internal CRPS spread.

Please review the tDCS thread. It is worth a shot at trying. There are resources listed there as well as treatment facilities. You can also learn a lot about tDCS by doing a Pub Med search.

If you would like to try it yourself you do not need a script to purchase the equipment. Just do a search and you will locate sites that do not require scripts.

I feel very uncomfortable thinking about it but one doctor suggested I might have a neuroma since my pain is usually very localized and a spot shows on the MRI. A surgeon injected a anesthetic and it seemed to help.

Sympathectomies are considered bad for RSD. They provide a "cure" about 10% of the time but 90% the RSD comes back much worse.

Sympathectomy
 

Hi there, I am brand new to this site too. I have had RSD for 15 years this September. In my case the RSD started in my left calf and over a couple of years went to both legs & both arms.

I had sympathectomy done on both legs about 8 years ago. This was after dozens of nerve blocks and implanting SPINAL CORD STIMULATOR one for legs & one for arms. In my case the RSD was so strong that despite cutting and gapping the nerve the RSD returned to my legs. The only good result is that it moved down off the hips down to the thighs.

My advice 1st thing is get 2nd opinion first. I have a mixed feeling about whether doing such a major surgery is called for if you have only had RSD for 2 years. You might look into less invasive treatment such as nerve blocks even spinal cord stimulator. (they can implant temp wires to see if it will work for you first) Even the use of Hyperbaric Oxygen Therapy. (You can find info at rsdhope.org - look under treatments) This is something I have wanted to do, but can't get it approved by my Workman's Comp. Now on the other hand maybe going big is the play that would work for you. If you hit these nerves before the RSD gets so ingrained that like me it can bypass the nerve being cut.

I do really think long before getting a sympathectomy I would try other treatments first.

Sympathectomy
 

Hi, I am so sorry you hurt. I was diagnosed with RSD in my left foot and calf by a vascular surgeon. He assured me that he caught it soon enough and that the sympathectomy would be the best route to go and would I mind if he brought his interns in the room to see. He described a small incision approx 3 inches long in my stomach, and that they spread it and then move all the organs aside and it would give them access to my spine- through my abdomen!. When I got out of surgery I was miserable- The incision was 7 inches diagonal and crooked across my stomach ( I am 6-3 and was 175lbs) so it went from one side to the other. This was in June 2006. In August 2006 one of the medical journals printed an article that stated the surgery was considered butchery, in that it took any chance of a neurological cure out of the picture and there was no proof of success. It didn't help me. It made it worse. I immediately got RSD in the incision area and the skin is as sensitive as my leg, not to mention I have terrible stomach gas pains since. If they ask you about doing this procedure, I would be extremely critical. Look around for yourself and find those journal reports so you have something to confront this doc with. Under no circumstances would I ever let anyone I know go through this without doing hours worth of research. Do not take this lightly for your own sake please. Best of luck, and prayers for a cure!