Nigel, Mike is the best! I even gathered good info from his most recent posts. My wife Suzy had out patient ketamine infusions at GW Hospital in Washington a few ears ago. It was a 4 day affair. Weeks before she had been given Ketamine shots from her doctor. Neither helped her much. The reason I think is because she had RSD for several years already and that the 4 day infusion and shots just was not strong or long enough for her advanced condition. Mike's info for treating those with RSD for several years gives me hope.

"At the moment my parents including myself are very anxious and unsure about this treatment...will it work? is it risky? is it addictive? does it really cure rsd? etc etc...my parents dont want to rush me into it however dr rohr said that time is very important in this condition and treatment is very difficult after 1 year.

At the moment in my condition I am ready to do it if there is a good chance I will come out pain free..we just need to weigh up the pros and cons.."

Keep in mind, my understanding is Ketamine is not a cure. It can put you in a remission where you'll have great relief for several months to several years. For some very little relief. As far as addictive I don't see that being an issue. Anything is possible but I just don't see it happening.

My wife handled her treatments very well and slept most of the time during the infusion. She was a bit woozy and silly coming off of the ketamine and was tired the rest of the day. A few weeks after her 4 day infusion she also had 2 hour lidocaine infusion.

I'll stick my neck out Nigel and advice you to run, not walk, and ready yourself for the infusion. I'll wager you'll do fine. You'll look back and say to yourself that it wasn't all that bad. I strongly believe your doctor gave you sound advice---the earlier the better.

Hey guys,

The doctor advised me to go home for now and relax (or do my best to lol) as he will be away for at least 2 weeks. I travelled back to Malta yesterday and the pain I felt was petrifying, never felt the shocks, burning and lasers so strong!

Anyway, regarding the treatment, Dr. Rohr is planning to give me a 10 day inpatient treatment through a Hickman line (quite scared about the procedure!) and be hospitalised for 14 days. The first 2 days they will inject a low dose and increase gradually till I reach my limit and I am out of pain and 'awake'. Then I will remain 5 days on that dose and gradually decrease. The aim is obviously that I am pain free after the 10 day treatment.

Is this the normal 5 day inpatient technique or is it slightly stronger/longer?

And thanks so much for your help and support Mike and Jim

I think its stronger, which is a good thing. I know the unknown can be spooky but you will be fine. Like I said you'll be sleeping and perhaps dreaming most of the time. My wife was giddy after hers, meaning she was high as a kite but not at all freaking out or climbing the walls but spacey. The effects didn't last long with her. Yours will be more, my understanding is ketamine doesn't stay in your system long so your head should clear up and hopefully you'll be pain free. I wish my wife had this 10 day treatment instead, maybe she will consider it in the future. Please keep us posted and Good Luck!!

jim

So did your wife do the 5 day treatment and did she do it through the Hickman line? If so, at what stage did she do it and was it successful?

If I remember Dr. Rohr did mention that I won't be doing the high dosage but I will be on the ketmaine for 10 days (5 days at my level and the other days increasing & decreasing). Maybe Mike can confirm whether this is the 5 day technique or slightly stronger? Will also look into this 10 day out patient method that Mike shown us it proves better results. Just puzzled how Dr. Rohr hasn't recommended it to me and has said this treatment is my best chance

I'm not sure if you saw my earlier post about my wife's experience. She had her's done through a Dr. Chin at George Washington Hospital in Washington---

"Nigel, Mike is the best! I even gathered good info from his most recent posts. My wife Suzy had out patient ketamine infusions at GW Hospital in Washington a few ears ago. It was a 4 day affair. Weeks before she had been given Ketamine shots from her doctor. Neither helped her much. The reason I think is because she had RSD for several years already and that the 4 day infusion and shots just was not strong or long enough for her advanced condition. Mike's info for treating those with RSD for several years gives me hope.

"At the moment my parents including myself are very anxious and unsure about this treatment...will it work? is it risky? is it addictive? does it really cure rsd? etc etc...my parents dont want to rush me into it however dr rohr said that time is very important in this condition and treatment is very difficult after 1 year.

At the moment in my condition I am ready to do it if there is a good chance I will come out pain free..we just need to weigh up the pros and cons.."

Keep in mind, my understanding is Ketamine is not a cure. It can put you in a remission where you'll have great relief for several months to several years. For some very little relief. As far as addictive I don't see that being an issue. Anything is possible but I just don't see it happening.

My wife handled her treatments very well and slept most of the time during the infusion. She was a bit woozy and silly coming off of the ketamine and was tired the rest of the day. A few weeks after her 4 day infusion she also had 2 hour lidocaine infusion.

I'll stick my neck out Nigel and advice you to run, not walk, and ready yourself for the infusion. I'll wager you'll do fine. You'll look back and say to yourself that it wasn't all that bad. I strongly believe your doctor gave you sound advice---the earlier the better."

Nigel -

It's entirely possible that no one is doing the out patient treatment in Europe right now. The only possible person who I could think of to contact would be another of Dr. Schwartman's collaborators, Ralph-Thomas Kiefer, MD, Department of Anesthesiology and Intensive Care Medicine, University of Tübingen, Tübingen, Deutschland.

And as far as the numbers are concerned, my guess is that Dr. Rohr intends to give you pretty good ride, if it takes approximately 2.5 days to get up to cruising speed and another 2.5 to come down. Trust me, this is NOT the standard 5-day inpatient ketamine infusion that's largely offered to patients in the US. Put another way, it sounds like you are in good hands, especially for someone who may still be in the "intermediate" stage of the disease. I would take the deal.

One thing though, and this is applicable to any ketamine patient - and may not be too hard in your case - you should plan to spend the 3 - 4 weeks immediately after the procedure in as stress free environment as possible, so as to allow it to "set." It is not, for instance, the time to resume classes at university.

Mike

Or take 10 mile jogs!

As much as I would love to avoided it due to its 'tough' proceduree, I think its my only/best bet at the moment. I think I will also be doing nerve blocks together with the ketamine.

My pain is quite sever and has spread to the entire lower right leg. I also have similar pain in my left leg ang left arm however to a much lower extent and not constant unlicke my righ leg. Unfortunatly I have done all the wrong things in these 6 months (knee athroscopy + intense physio) which have boht aggravated/increasesd my pain and symptoms. Could I have progressed the condition?

Dr Rohr stressed that if the treatment works, I would need to lead a very calm life for about 6 months to 1 year, avoiding activities that would encourage the pain to return (no gym, fishing etc etc). As much as i miss my pre life, this is my least worry as long as i am pain free and able to 'live'. Just a little concerned about my muscle wastage however just being able to walk normally should help..

Bottom line is that the doc said I have a good chance / possibility that this treatment will work and although its experimental, I think its my only real shot...

Jim, sorry to hear about your wife, this 10 day outpatient treatment seems promising and worth a try. What do you think?

hi Nigel,

I did a 10 day ketamine outpatient low dose treatment here in the states 13 months ago, and it went really well. it sounds like my doses were lower than yours will be, but my doctor's policy was to not tell the patient what their dose was, so I don't know for sure what I received the entire 2 week period I was treated. I do know that my final dose was 150 mg titrated over 4 hours.

It's interesting to read about how your doc has instructed you to minimize stress and physical activity subsequent to your infusions to maximize their effectiveness. I returned to work FT 2 months after starting ketamine, and I have been working pretty long hours. My job is highly technical and can be really stressful. and on top of that, I walk a lot -several miles a day at least, or as many as 5 or 6, up and down a lot of hills. AND I have 2 teenagers that stress me out too.

So I go through ketamine like nobody's business!! I am a ketamine docs dream come true... I've had 41 infusions in 13 months. My typical protocol is 150 mg titrated over 4 hours 2days in a row every 4 weeks.

I have never been told to reduce my activity levels, I actually thought I was doing the right thing by keeping my body in good shape. the job is a necessity, but my kids...ugh. a few years, maybe??

I truly hope you do well, and thanks so much for your post. I appreciate getting another perspective on this -please keep us updated on your progress!

Take care, xoxo Sandy

Hey Sandy,

Thats great to hear that your ketamine treatment works great for you. May I ask how bad and how long your RSD was before you did your first ketamine treatment?

Thanks for your encouragment,

Nigel