Hi MSMD,

I did not go through with the Ketamine treatment, I think I mentioned that.

Dr. Rohr suggested that I might want to try IV lidocaine treatments first, since my pm dr in Canada was able to do so I started that. I improved immediately and significantly with the lidocaine so we decided to hold off on Ketamine. For me lidocaine has been very successful and I became much more functional after we started that. The Keatmine coma is after all a very dangerous treatment with many risks and after weighting the pros and cons I decided to put Ketamine on hold. I seem to be the poster girl for rare complications and side effects so I'm very cautious now.

Dr. Rohr did not have much hope that the low dose ketamine treatments would make any significant difference. I understand he published a paper to that effect based on their clinical trials completed in late 06.

Correct me if I'm wrong but I believe the boosters you are discussing is a different matter after having already having had the major reboot with the coma, it is my understanding that the boosters are neccessary.

Just a thought...

Considering the lower costs and lower risks of treatment for IV Lidocaine vs. Ketamine, I'm wondering why there are not many doctors offering Lidocaine to patients?


MsL


Warm regards,

MsL

Hi MsL:

My partner had bier blocks (lidocaine infused into the arm). These were tremendously helpful originally and then became ineffective within 7-8 months. Furthermore, to complicate matters, the IV was being put into the original injury site (we didn't know any better at the time) which we believe caused massive secondary spread.

I am glad you're having such success with IV Lidocaine. I personally haven't seen enough RSD/Lido* studies to prove it's long term efficacy but our short experience with it showed a temporary improvement.

But as they say, RSD Patients are like Jacks in the Box, you never know what you're going to get.

And I don't think you're alone in that feeling of "if something could go wrong, or if i could get the short end of the stick, I usually do" ...that seems common amongst RSD folks.

RSD Sucks.

Hi MSMD,

Just to clarify an IV Lidocaine infusion treatment is not the same thing as a beir block using lidocaine.

The IV lidocaine treatment is given intravenously, in my case they insert the IV in my hand, give me a 100 mg bolus and then add 700 mg to the saline solution bag, the infusion runs over 2 hours. We must be monitored on a heart monitor during the infusion. My pm Dr. got the protocols from Dr. S in Philadelphia.

I have very quick relief of pain and my range of motion returns immediately. Typically other than feeling tired I feel like I could dance on my toes all the way out of the hospital. It also helps my brain, as typically I find I'm right back to being able to think and speak clearly. This lasts me for about 2 weeks than it is like a battery wearing down. There does not seem to be any long term side effects with taking this.

Because of the large number of RSD patients my pm Dr. is now treating with lidocaine he has started to administer the lidocaine subcutaneously with a small inexpensive pump (it looks like a baby bottle). It doesn't need to be monitored on a heart monitor and the patient is sent home with it. The subcutaneous infusion runs for about 8 hours. I tried it twice but I feel I have better results with the IV method so despite my doctors efforts to switch me onto that he finally agreed to continue with what works best for me. Other RSD patients find it works just as well as the IV. This method of deliver is allowing the pain team here to treat more patients and at a lower cost.

I don't believe there are many long term studies that have been published about this, most likely because it is not going to make anyone the big $$$ like ketamine is starting to do.

You are right RSD is like a jack in the box and it does suck! Mainly it is not one of the "Sexy" diseases that attracts enough bright minds and money for research. I think that is starting to change but slowly.

Wishing you and your family well.

MsL

So what is the nature of the improvement. What theoretically is happening,physiologically to the body in a coma state with infusions? Is the resting state breaking the pain cycle established in the brain, repairing other organs, nerves, circulatory systems etc? What are doctors, reseach clinicians , and others involved or interested saying about the effectiveness of this approach as to what exactly is happening to cause temporary or possibly long term remission?

Richard,

What an excellent question, and boy I wish I could answer you properly, but I can't. I'm not an M.D.

There are more and more studies being published regarding the efficacy of Ketamine benefiting RSD.

I honestly don't know why it works. In fact, our primary PM Doc said to us, before we went, "Well, we've gone as far as we can with meds, you've tried everything...the coma thing scares the hell out of me, as a M.D., it doesn't really make sense to me why it works, but if it does, who cares. The only option you guys have left is an alternative approach or make peace with the pain mitigation you're at right now and live with it."

I am paraphrasing poorly. He was scared for us, he would've preferred us do the 3 day out patient, but our reason for not doing that was the reports on that don't show as long term results as the coma.

As for the relief, we couldn't touch the right side of my wifes body for the last 2 years. She was on about as high dose opiates as the doctors in Mexico anyway had ever even heard of. (Talking thousands of miligrams of Oxy a day + 1/2 dozen other meds 4-5x higher than what is considered "high dose".

The allodynia (burning sensation) is completely gone and has been since she's come out of the coma. Her skin can be touched, stroked, squeezed, handled. Her mobility (she had severe dystonia) has returned incredibly well. We thought the limb was frozen in place as the arm and hand hadn't opened or moved 'at all' in a whole year. Atrophy had set in. The burning, stabbing, electrical jolts, shooting, aching...it's all gone.

Now, with that being said, let's not get too crazy. She has had some of this pain return, albeit to a MUCH lesser extent...and the neat thing is, although she might feel some pain some days (this usually is due to the PT), the pain usually recedes the next day. She has occasionally had to take a 'pain med' a couple days for 'acute' pain, but we're talking 15 mg. of oxy maybe 2x in a day.

She continues to receive boosters (infusions) every 2 weeks. She is nearly done with this regimen. This most recent booster, she hadn't had any RSD pain whatsoever in these last 2 weeks so we weren't entirely sure about spending the money to get it done, but it's highly recommended to get boosters every 2 weeks for the first 3 months after the coma so that's what we're doing.

Our lives are 'slowly' feeling like they are returning to normal. I think we are/were so used to living in crisis almost every second of the day that it feels still a little bit unreal.

Everyone knows it works here because my wife and I actually argue again! Haha, that hadn't happened in a long time. She can eat real food again, has an appetite, can sleep 8-10 hours uninterrupted, can leave the house and do grocery shopping, pick the kids up from school, be a wife, mom, daughter, etc.

I'm a realist. I know this could come back. What is a comfort to me however is that I now know we have something that can actually make it go away again however; ketamine.

One of the issues of course is financial. This stuff is expensive. although it's looking like insurance companies are starting to step up to the plate. I haven't even tried to submit our bills yet, but will take on that gargantuan task soon and will report back my results.

Again, I don't know why it works, not really anyway. I'm not entirely sure anyone truly knows, but SOMETHING is working!

I hope that low dose ketamine becomes a standard early measure for those recently diagnosed. I suspect it would make a HUGE difference. For those who have it unbelievably bad like my wife did, if you are ok with the risks....trust me, we were scared too despite all the research we had done...and don't have the financial means, many patients have started foundations and fund raising efforts. It's hard, because alot of us are so private and it's hard to 'put your stuff out there for everyone to see'.

I hope this helped some.

Actually, using ketamine in any delivery form to treat RSD is not FDA-approved.

Where have you heard this?

Ketamine is FDA approved for (for the last 30 years) for outbreak pain.

Read the following:

http://rsdhealthcare.org/PatientInfo/Reimbursement.htm