I know there are so many posts about ketamine infusions so sorry to make another. I was wondering if people who have had this treatment could answer some of these questions.

1 Who did you have ketamine with and was it outpatient or inpatient? Were you happy with your doctors care?
2 Did anyone's pain get worse?
3 What percentage of pain relief do you feel you have? Are you doing boosters?
4 Any lasting side effects?
5 Any spread of RSD or new conditions that have happened?
6 Anything else you wish you would of asked or done?
Thank you for any feedback

My daughter has successfully had ketamine. She had approximately 8 out patient sessions with no real results. A doctor put her inpatient with no significant results. Finally, we tried inpatient but weaned off all pain meds first. Total success. Her pain went from an 8-10 to a zero and lasted for 7 wks. When it came back it is intermittent and is a 4. We are going back for boosters next week to try to get it back to zero.

There are some interesting ketamine resources on Facebook. Ketamine Klub and RSDSA org are two of my favorites.

Liz

I started ketamine on April 19, 2010 with Dr Getson, 10 day low dose outpatient protocol. I knew after the first day that it was going to work for me - my pain was generally reduced to 0-4. After 22 treatments over about 2-3 months in NJ, the RI WC Courts ordered me to start receiving my ketamine here in my home state with a doc that had just become licensed to perform the infusions.

The set-up here is not nearly as nice as Getson's-no lounge chairs (just a hard exam table to lay on!!), and the room where I get my infusions is too bright and is sometimes noisy. But I no longer need to travel over 300 miles every 4 weeks. And my nurse is wonderful. I've had 19 infusions here in RI. I generally get my "boosters" for 2 days in a row, 150 mg, and it takes 4-5 hours. Versed and Zofran are infused at the same time.

My authorization for ketamine is currently expired, and my RI doc won't take care of me until the Courts authorize further treatments. so I am on hold for another 6 or so weeks. I returned to work FT 2 months after the inception of my treatments, so I am trying not to panic...(not for nothing, but my docs here have charged over $31,000 to my insurance company, and all they do is start my IV, the nurse takes care of the rest! and they insist on authorization from the courts before I receive any more care! This business is truly all about the $$$!!!)

My pain sometimes will flare right after an infusion. The very best I tend to feel is about 1 week to 3 weeks after wards, then I will start to get sick again. I am extremely active, and work FT, so I probably run through my ketamine faster than most. My docs had told me I was getting 200 mg, but my nurse told me last week that my dose is actually only 150. So maybe the lower dose is why I need my infusions more often also.

my RSD has not spread since I started getting ketamine. it's definitely better. But not perfect. And while my pain might not be bad all time, I still have the terrible sound sensitivity and need to be careful how I use my arms. and I will always have trouble lying down on my head. But I tapered off of heavy doses of Fentanyl after starting ketamine and have been using Fiorcet instead for my headaches, and Frova if I get a migraine.

The only thing I wish I could have changed is I wish I could have started ketamine sooner!!! But those of you who know me know that it took me many months to get it when I did!!

The best of luck to you, Sandy

1. Started in Boston at Beth Isreal, outpatient every 2-3 weeks low dose. Move out west to be near Dr. Leverone who does a higher dose.
2. No.
3. 75-80% pain relief, and afterwards with a year of PT, out of wheelchair. I go back as I need, which I am scheduled to do so in the next 2 weeks.
4. I didnt have any side effects or halucinations.
5. I did have spread but this was before ketamine infusions. I do now have ulcers but I think it is from the stress I am under, maybe diet too, not sure.
6. I wished I would of asked Dr. L to marry me, that way I'd always have quick access to him lol. Seriously though, everything was explained and there is never a guarantee but I figured what did I have to lose? Either it worked or it didn't.

Dee

Thank you all for your feedback. It is nice to hear positive stories and I am so happy for you that got relief.

I will start by saying since I have had rsd for 4 years and been to a lot of rsd specialists and tried many treatments I have become very skeptical of everything. My huge fear is getting worse, a spread or a new problem. It is bad enough when one tries treatment and does not help but then when you add more to the already well as you all know it is horrible.
My reason also asking about which doctor is I am thankful that I can go see anyone if I choose to do this. I know Dr S has a long wait list and to be honest I hear sometimes for the procedure he is not even there and that I don't like. I think the doctor you see should be there during the procedure. Also it is confusing about which is more appropriate in terms of ip,op,dose,etc.
Dee I'm glad you are doing better. Do you do special PT now?
Sandy I hope you get approved asap. Such extra stress you have to face on top of the already. I can so relate to the sound sensativity. I have that so badly and that is an understatment. I am happy though for you that you have found a treatment that works
Betsy thank you for those websites. I am going to look at them. Where did your daughter have treatment? I hope the boosters help her.
Thanks again everyone

I wouldn't get too hung up over seeing the doctor constantly. My daughter's doctors (she gets them done in NY and DC) might show up in the beginning to say hi and check in but the residents are the ones with the orders and the nurses do all of the work.

This is SOOO true - And the quality of the facility is especially true if you are checking into a hospital for the high dose or "inpatient" treatment. There are hospitals where the care is reputed to be outstanding - such as Hospital for Special Surgery in NYC. Hahnemann, on the other hand, does NOT have such a great rep, despite having Dr. S. on board. Its nursing staff just doesn't care that much. The outpatient is OK, but inpatient care can be shaky...

Daniella, if you ever find something that works for your ears, would you please let me know? It is amazing how many aspects of your life the sound sensitivity can impact - my husband and I cannot eat out at most restaurants, or go to the movies, or watch TV together, etc. It's such a drag.

Dee - you got into the BI before they closed it to newcomers. Wow. Interesting. I understand the Arnold Pain Center is STILL closed to new patients, although for a while last year they said they were going to take new WC. They don't do a start-up protocol of 4 or 10 days, just the one day at a time, every 3-4 weeks....

hi Sandy,
Yes, I was one of the first to get into BI/Arnold Pain Center and I think the doctors and nurses were awesome. I know a lot of others may not think so but they treated me excellent. I was going every 2-3 weeks for the low dose and when I knew I was moving out west, it was hard to leave them as they took such good care of me, I even have one of the nurses email to keep in touch with them, letting them know how I am getting along. It was my NH doctor who got me into their program, he is considered the top dog in NH and knew ketamine was my only chance at a somewhat normal life. He fought so hard for infusions in his hospital, afterall, it is a teaching hospital, but he just couldn't get them approved there. Hopefully someday they will wake up and listen to this doctor.

BI/Arnold also accepted my medicare advantage insurance for payment as well, I believe at that time I had Today's Option. Todays Option is not available where I live now though so I had to switch and I have to pay out of pocket for infusions now. But, I am fighting them this time for payment and Dr. L is behind me on this, and will provide any info/help he can. He would be more than happy to accept insurance payments but really, Medicare pays 140 bucks of the 2000 treatment, he would not be able to keep doing these if that is all he could get which I totally agree and understand.

I will pay for this next infusion myself, wait for their (Medicare's) little payment, and wait for my advantage insurances denial as I have no doubt they will deny me, and then I will start what may be the fight of my life to get these covered. I will write my governer, congress and even the President if I have too. They wonder why Medicare is in the state that its in when they would rather pay 32 grand for a pain pump ( which I only tolerated for a little over a year because it wasn't hitting both upper and lower, and not to mention the going in every 4 weeks for a refill.... ) when a 2 grand infusion gives me longer relief. Heck, I may even contact the news stations. I'm just not going to accept this any longer and when I get a hair up my.....well I won't finish that but alls I can say is lookout, I'm like a storm brewing

Sorry to ramble on so and I best stop here for now, I will keep you up to date if you'd like, and I hope to be more active on this board too. I'm just really frustrated/mad/depressed lately but as an ole friend once said " chin up"

Dee

Hi All, I had to laugh when SandyRI said "Hahnemann, on the other hand, does NOT have such a great rep, despite having Dr. S. on board. Its nursing staff just doesn't care that much. The outpatient is OK, but inpatient care can be shaky..." Shaky would be a total understatement! I would never want to do inpatient there again. The nursing staff ruined my treatment and eight months later I have so many problems as a result of their stupidity...all it takes is one person who doesn't care and it can ruin your life. Amazing. They just do not care. Their idea of ICU is not the norm. If anyone has to go there make sure they have someone as an advocate to watch everything they do all the time. I guess I am the exception to the rule for ketamine treatment. It did help me but it was a rough time in there. A fall in the ICU (their fault) caused me severe pain and now still several months later I am left worse now than I ever was. Just be careful out there. If I ever met the nurse that did this to me I would have a few choice words for her!!!
kathy d
P.S. All I can think of is what comes around goes around and she will be very sorry. I pray what happened to me never happens to them or their loved ones.

I am so very thankful after an infusion and I get to be more like my ole self, but I also have to go back for infusions. I will be going again within the next 2 weeks, and I consider myself very lucky to be able to. I'm very careful after infusions in that I don't do things that could possibly hurt myself such as riding roller coasters ( gawd I used to love to ride) I also don't ride my Harley anymore but I still have her, and keep thinking someday.....somewhere on a desert highway....sorry old song

The medicare advantage insurance I have has a program called Silver Sneakers which gives me free membership to any gym in my area. I do go to Mad dog and I only do what I can and the staff are very much aware of my condition and are quick to help or offer advise. Now I'm not silver and I can't even keep up with my elders, but they sure keep me smiling when I'm there and I have the utmost respect for them.

Dr. L's infusions are done in a hospital setting, you get a bed and you are allowed to have someone with you. He even lets the person you bring know how things are going, where to go to get the rx filled ( yes, you do take oral ketamine for 7 days ( I think, memory is not so good these days) afterwards. I get to see him throughout my stay although I sleep through most of it and really only remember seeing him when I first get there. We keep in contact via email and I really couldn't ask for a kinder, compasionate doctor.

Hope my info helped and made sense, and if I can answer any other questions, please do not hesitate to ask

Dee