,Sandy, WOW 32 treatments, and you still have pain, Thats what I just don't understand, I know the crappy feeling of being on certain meds.

I take 3 Norco, 2 soma, 4 heart meds, and Trazadone each day and I hate the feeling,I've been on everything in the past, even IM demerol about 15 yrs ago, so I do feel better on what I am on now, but would just love to take only my heart meds.

Now can you explain to me the difference between the inpatient and the outpatient treatments.

I remember Kathy ( I think ) had just a nightmare of a time in the inpatient treatment with ketamine. That scares me. She said she even was hallucinating, what is that all about?

When you did your infusions did you feel that way also?

I loved and trusted Dr. S in Philly, but have read different stories about him lately, does he only do the ketamine now, because when I was up there both times yrs. ago he was using other meds in our blocks. I had to stay for a 2 week treatment plan both times with different blocks every day, and he also gave me a ton of meds enough to knock out a horse if I took what he had ordered. Now I hear he wants everybody off pain meds, do you know why?

My Dr. contacted him regarding the ketamine and he told her that I am too far along with the RSD and probably not get good results from them, maybe even aggrevate the RSD, does this sound strange to you, because it does to me.

Back to your treatments, how long do you have to keep doing these, or are you done?

Thanks for your answers and hope to hear back again, sorry for being an annoyance

Wendy

Hi Wendy - I want to emphasize that I am SO much better than I was before the infusions!! But even with 32 infusions in just under 9 months, my RSD has never just "gone away." Its still an ongoing battle to control it. I am off substantially all time release (or long acting) pain meds. My RSD started with a shoulder injury from carrying an overloaded workbag after a long day at work, too far, too long, etc...but the RSD had spread to my neck and my head and that is where my main weaknesses remain.

Just lately I have started to notice a big improvement in how I feel - my PM doc upped me to 200 mg 2 days in a row once a month in early December. He feels that eventually I should be able to make it to once every 3 months between infusions (which is Dr. S's protocol). I don't know about that, since when they start to wear off it is simply awful - the bone crushing pain, migraines, everything starts to return and I panic. Plus I need to work and I'm in busy season and just don't really have time to be sick any time soon and can't afford to take meds and be out of it when I am on the job. But on good days I can be at 0 pain levels for a couple of hours or more at a time. That is just amazing, a year ago I never would have thought 0 pain levels were a possibility for me.

I only take the Skelaxin (like Soma, but stronger) at night. So my regular meds consist of Topamax Clonodine and Cymbalta. Everything else is on an as needed basis.

Dr. Getson is over the bridge in South Jersey from Dr. S. in Marlton, NJ (exit 4 off the Turnpike). 856-983-7246. Perhaps he can offer you some hope? You will never know if a treatment will help you until you try. Dr. S authored a paper published in early 2010 that asserted an 70% success rate with low dose outpatient ketamine infusions for RSD, regardless of the length of time that one has had it. That paper (and lots of others on ketamine) are available on the RSDSA.org website.

the 5 day in-patient ketamine treatment delivers ketamine at a much higher dose, and therefore, in much greater totals, than the "low dose" out-patient infusions. It is also hideously expensive because you are admitted to the ICU for the procedure. Getting insurance companies to cover this stuff is tough. In my case, the RI WC Court ordered the insurance company to pay for my infusions after I had received several months of treatments and was scheduled to return to work. (My case set a precedent for other WC cases in RI - RSDers can now get low dose ketamine infusions in our state.)

I've never hallucinated during my treatments. But at the higher doses, I understand there can definitely be issues with that. And ketamine reactions at higher doses are different for men because of their testosterone levels than they are for woman - they reportedly can get violent.

Kathy d's nightmare was not just about the ketamine - it was also about Hahnemann, which has a reputation with Philly locals as being a real crappy hospital. Dr. S used to practice at Jefferson. What a shame he changed venues. The infusion suite across the street where the low dose ketamine is administered is supposed to be a nice place, though.

I don't know why Dr. S wants everyone off meds. It seems his patients are required to agree not to disclose anything about their treatments to anyone else, or risk their access to ketamine. Hmm....

And to answer your last question - until there is a cure for RSD - I will never be done with my infusions. Because the effects of the ketamine wear off, and I revert back to where I was before I started to get it. Ugh...so I be still be doing this when I am 80. Whatever works.... (pray for a cure!!).

Now I'm the one rambing....have a good one, XOXOX Sandy