Lidocaine vs Ketamine infusions
 

Has anyone had both of these? I am looking into for my daughter and her current doctor performs the lidocaine infusions, but not ketamine infusions.

If you have had both performed, did they give equal relief, or did one work better than the other? How long did your relief last?

I had 8 lidocaine infusions, 300 mg each, between July 2009 and early 2010. It was the first time since my diagnosis with RSD in June of 2008 that I felt somewhat normal some of the time!!

Then on April 19, 2010 I started the 10 day ketamine outpatient protocol with Dr. Getson in Marlton, NJ. The difference was amazing! Ketamine is about 3-4 times more powerful than lidocaine. I stayed with Getson for the first few months for my treatments, traveling from RI to NJ when I needed my infusions. Then a local doctor, Dr. Chopra, began to offer them here. So I no longer need to travel to get my ketamine.

To date I've had 54 ketamine infusions, my current protocol is 200 mg 2 days in a row every 4-5 weeks. I returned to work on a FT basis a year and a half ago.

The very best of luck to you and your daughter! Ketamine changed my life! If you have any questions let me know....

Xoxo Sandy

Thank you, Sandy. My daughter is only 13, so I'm thinking it would be best to start with the Lidocaine, then we can work up to the Ketamine if we need to. However, I don't want to put her through it if the Lidocaine doesn't give good relief. She has not had relief from nerve blocks; she has had 5 out of the series of 6, each providing only a few days relief of decreased pain, but the pain was still there. She is so fed up with getting poked and injections, trying this and trying that, with nothing working. I just hate to put her through it if it won't be enough.

Why did you switch from the Lidocaine to the Ketamine? Did the first rounds of Lidocaine work and then stop working?

My wife had a lidocaine infusion about 4 years ago at GW hospital in Washington. It had no effect but my wife at the time was in her late 40s and received very little treatment or even a diagnoses for 4 years. She does benefit somewhat using prescription lidocaine cream.

Lidocaine infusions in general are just not as effective as ketamine and can be very risky. I had a severe reaction during one infusion and my throat almost closed up. Each infusion caused my BP to increase to the point that my head felt like it was going to explode. The relief I got was welcome but didn't last that long.

Ketamine, for me, is an amazing solution to my pain. I receive very low doses - only 200 mg each -and have minimal side effects. There are still some side effects, such as terrible nausea and migraines, for which I take meds. But I am so much better that they are worth it. Ketamine has allowed me to return to work on a FT basis since June 2010.

I recommend that you visit the Ketamine Klub FB page and check it out. Many real nice people are on there that will be able to give you lots of support in regards to Infusions for your daughter. Good luck!! I will keep her in my prayers!

P.S - Have you tried any of the PT programs for children yet? Dr. sherry at Children's Hospital of Pennsylvania in Philly is reputed to be one of the best. There is also a good Children's Hospital in Waltham, Mass.

Sandy

You thanked me for mentioning Lidocaine infusions in a different thread, but I have no experience with them. I'm familiar with Lidocaine patches and cream--both of which are a good idea, btw.

Ketamine is considered to be one of the best options to put patients into remission that have tried more conservative options to no result.

I have had blocks performed by 2 different doctors. The results were better with the 2nd doctor, even though I was already in a window that many patients no longer see any relief from them. The skill of the doc and the meds used in the block can make a difference.

Many people do get relief from a SCS. It can cause spread though.

My personal opinion is that there are different treatments and medications that work well for different people. It might require a combination of things to get her major relief and/or put her into remission. Finding a doc that is knowledgeable and you are both comfortable with is key.

If you can get her into HBOT, and warm water therapy, before and after she undergoes blocks, or infusions, it certainly can't hurt--and might very well help!

Lit Love, you're right, you did, however, mention the ketamine outpatient therapy, which went hand in hand with the lidocaine therapy when I started researching it. We went into her dr today & he is starting the pre-auth for the Lidocaine infusions....he does 1-day infusions, not the 3 or 5 day, so hopefully this will work!!!! Unforunately, i cannot find a dr that does the Ketamine therapy that also takes my insurance. Her dr does not seem to enthusiastic about the Lidocaine infusions, because of their short-term effects. He put her on Celebrex today and said if the Celebrex doesn't provide relief or she if she cannot tolerate it and if the Lidocaine infusions don't work, we need talk more about the SCS. :(

I can see why you may be reluctant of the SCS from all that you have researched. The thing that gets under my skin (only personal) is how many doctors blindly recommend this device. I truly believe it rids them of the DEA in some manner and the ability to make money at the same time, just my observation. Push comes to shove, there is the SCS test your daughter will receive before any major surgery takes place. A lead wire is temporarily inserted near or in the spine. The device itself is outside of the body. I think this test lasts for a few days. This way your daughter and yourself can evaluate the device without full obligation.

I urge you to seek a 2nd opinion before letting anyone NEAR a child with an SCS.

Children have a high rate of remission from RSD with the right treatments. Seek out the very best doctors for your child. CHOP in Philly, Children's Hospital of Boston, The Cleveland Clinic, etc.

The SCS has an incredibly high PROFIT rate for doctor's that inplant them. And equally high failure rates for their patients.

This board offers a search option - you can enter the term SCS into the box up in the right hand corner and see for yourself how many have suffered from infections and repeat surgeries after having an SCS inplanted.

Sandy

Hi occox
 

Hello, and I am sure sorry your daughter has to go through any of it. However I have had two Katamine infussions for my cervical area C3-7. This proceedure did help me with the pain. I also was satisfied that it didn't hurt administering it, and I got good pain relief after. I would do this for myself again if I ever needed it. I had no side effects, no headaches. This was my experience. ginnie

Wow Jim, I never considered the DEA angle!

You have to be careful using the Spinal Cord Stimulator trial as a means to evaluate its effectiveness for CRPS. Thousands of CRPS patients have undergone a "successful trial" only to discover that upon permanent installation the unit either stops working very soon after installation or within months, causes painful stimulation that cannot be ameliorated, or ignites a new spread with a prime culprit being the incision sites (which become a new source of neuropathic pain.) This is frequently accompanied by lead migration and sufferers are many times convinced to undergo yet another surgery, (commonly referred to as "a revision surgery") which in a majority of cases does not help or worsens the CRPS. Any CRPS patient considering implantation should study up on the sanitized term "revision surgery." This surgery is even more painful than the original implantation, opening up scar area that has already been opened up twice, once for the trial and once for the installation. Hacking through that much scar tissue is not something to be taken lightly. I suggest reviewing copies of the physician's clinical manuals prepared by each SCS company, for a unsanitized version of this procedure.

Many CRPS folks are walking around with a failed SCS because they do not want to risk yet another maiming surgery to remove it.

Sadly the truth for many CRPS folks when their SCS ultimately fail is the perplexed comments from the doctor who can't understand why. Then it is basically, "sorry about your luck there is nothing more I can do for you."

There is not one shred of scientific evidence that Spinal Cord Stimulators are effective for CRPS beyond a relatively short period of time. The scientific evidence suggests that Spinal cord stimulators do nothing to slow the progression of the disease. Failed Spinal Cord Stimulators can negate the effects of future Ketamine infusions. Please see Elijennings journey as an example of this common occurence (RSDburningsacrifice).

I agree with you Jim about the financial incentive for doctors to blindly push installation of SCS for CRPS patients. When it comes to CRPS and Spinal Cord Stimulators, the scale is tipped in favor of the procedure being more beneficial to the doctors, who rake it in with trials, installations, revision surgeries, maintenance and the companies who push them (even though they know SCS have a high rate of failure among CRPS patients) than the patients who seek Spinal Cord Stimulator implantation in desperation.

I have become so outspoken because of the many CRPS patients with whom I have sounded the CRPS/Spinal Cord Stimulator alarm, only to be left following along in their route of post implantation misery and regret.

It is so hard to watch a child suffer. This procedure, however, is so potentially dangerous.

My suggestion to anyone considering this procedure for a minor would be to wait until the child is no longer a minor and can evaluate the risks and make the decision themselves. I can't imagine anything worse than suffering feelings of guilt for a decision that cannot be reversed, and a son or daughter who suffers life long permanent disability after a procedure documented to have little benefit and high risk.

I agree. The truth seems to be no real evidence SCS is truly beneficial to those with RSD, none! Short term relief for some, that is about it. Then it becomes one big headache. As far as the DEA, it seems they are deeply intrenched in doctor's decisions about your treatment if it involves narcotics. Especially those on long term care.

The reality is people that experience significant relief from the SCS return to their lives, and those that have a bad experience are going to be more vocal. Does the idea of spread from a SCS scare me? Yes. Very much so. But, I thought one of the previous arguments on the board about the efficacy of the SCS was that the data was untrustworthy because the trials were done with young adults and therefore their success rate won't be as high in adults.

Many docs, especially pain clinic docs, have an incentive to recommend certain treatments and medications due to their fear of Multiple law enforcement agencies.

For the OP--the more aggressive the treatment and the sooner you can get it for your daughter, the better. She has a good chance to go into remission with one of the inpatient children's programs. It might take more than round.

I had lidocaine infusion but not ketamine. I did not get any benefit from the lidocaine. After my pain was high but it could of been just a flare. I did not have the side effects stated. the nurse was there the whole time asking me though if I felt swelling or not ok.
I do agree from all the doctors I saw that starting with least invasive to more if it does not work is the way to go. I had in the start docs who wanted to do big procedures without trying less and I am glad I did not because some lesser ones sent me backwards as what was supposed to settle the pain increased mine.
I hope you can find what works for your daughter

Accox4, have you checked into Calmare?
 

Dear Accox4

I was looking for something else and found your story about your daughter by accident, but I have learned that there are really no coincidences.
I believe there is a reason I accidentally came across this. Our son has had RSD for over six years, but he's been in remission from pain since June 2010. Well, actually he's been in and out of pain remission because he doesn't get that he's different from other kids and he does things like getting on a trampoline and then gets re-injured. Then he gets a booster Calmare treatment, and thankfully responds well to it and goes into remission again. Please, please check out this non-invasive, non-painful treatment. We went to Dr. D'Amato in Providence, RI, and he is the best!

Good luck and God bless! I hope you see this! Blessings, Kim