[accox4]

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?

[SandyRI]

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

Originally Posted by accox4

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?

[accox4]

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?

[Jimking]

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.

[SandyRI]

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

Originally Posted by accox4

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?

[LIT LOVE]

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!

[accox4]

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.

[klmullican]

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

Originally Posted by accox4

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?

[ginnie]

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

[LIT LOVE]

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.