Hi everybody,

I was just catching up a little with what everyone has been posting lately and decided to share a post of my own.

I recently posted about my recent failed SCS trial and my disappointment that I have had with my doctor and his team during the time I was going through the trial. After speaking with him, other members here who have been through ketamine infusions, and doing some personal research, I have decided to go ahead with the 5 day outpatient infusion that he is suggesting. I will be starting on September 12.

Last Wednesday, I let my PM know how disappointed I was when I went through the SCS trial and how difficult it was to get in contact with him when I was having a problem. I am not sure if it is a good thing or not, but he is now convinced that CRPS can spread. This is something that he did not believe happened before me. Unfortunately, this learning experience for him had to come at my expense as the CRPS has worked its way up my right leg, and is now starting down my left. Although he does not believe that the ketamine will be of much help for my right ankle and foot, where the CRPS began, he does feel that it will lessen the symptoms that are a result of the spread.

The only thing that my PM feels will provide any relief at the original site is Intrathecal Prialt, (Ziconotide), due to the length of time that I have been showing signs of CRPS, and the severity of my case. I honestly don't think my case is really all that bad. Perhaps one of the most severe cases he has seen, but I know that some of the members here are in far worse shape than I am. Before I decide to go that route, I would prefer to do some more research and try some other less invasive methods. What I am finding though does seem rather promising, but it is another procedure that could cause further spread or a more intense flare.

I am getting a little off topic,so back to the Ketamine.

The week of September 12, I begin a 5 day outpatient Ketamine treatment. I did not ask what dose he starts at, but I do know that he will titrate the amount of Ketamine to 1 mg/kg. He recommended that I bring a book with me as it takes around 4 hours each day, but from what I have heard about the experience of other members on here, I am likely to just want to close my eyes and relax, especially since there will be Versed mixed in to help me do just that. I will have a pair of headphones and my phone that has a few playlists to help as well. I do not know if a PA keeps an eye on me, or a nurse while the Ketamine is administered, but the PM will check up on me briefly at least once every day. My biggest concern is having an IV started every day for 5 days straight.

Anybody that has had an outpatient Ketamine infusion, do you have any advice to give, any questions I should ask, or anything that I should be aware of before going in? I would like to hear the experience of anyone else that has gone through this as well. Even if I know your story, new and old members come and go on this site often, your posts may have been missed by someone else that may be interested in it.

I went through IVs of bisphosphonates (5 in a row + hospital stay). Normally they only give you one a week, but my case is complicated and so I got one IV every day for 5 days straight. I know what it's like to be hooked up to an IV (of course not w/ Ketamine). Good luck!

Dear Alaina,

I am so sorry about your experience with the SCS. I hope the ketamine offers you relief and is without problems. Ketamine is considered safe and is used even in very young children as anesthesia, so I don't think personally that there is too much risk. For me it was a real game changer and despite the lack of evidence for "functional" improvement in studies, I myself seem to have had it. It has been about 15 months since I started infusions and I am able to do much more than before I began. Improvement was gradual, as my doctor thought it would be, so don't give up if it is not like flipping a switch. My doc in particular used the "pain as a ball of yarn" analogy, that we were pulling the yarn little by little until the ball got smaller and smaller. It really has been like that for me and he said it is like that for most of his patients. You might get initial relief and you might also get a delayed improvement. I actually feel best about a week or two out, not right after.

I am in the close your eyes during the infusion and relax club, though I have seen where some patients do read. They get theirs infused very slowly. If you are going to be out for a while I would recommend putting on lip balm ahead of time. Also, I don't know if you are able to take a break during your infusion by having them back it off? I ask because some patients, self-included initially, offload a lot of fluid during the infusion. One study I read commented on it being "neurogenic edema". Getting info on this from nursing and having a plan for a bathroom break might be helpful. Four hours is a long time...

I am marking my calendar for the 12th. I will be sending many healing thoughts your way.

You guys, isn't Ketamine still a heavy horse tranquilizer? So, I wouldn't discount that. I don't think the comment of it being "very safe" is one to be taken loosely and lightly. You need to be watched 24/7 while on your IV. And I'm betting you will be!

Personally, I shy away from such "heavy" treatments.

Anyway, don't mind me. Maybe I'm too old-fashioned in my views on the product.

I hope your treatment is successful!

I have amended my statement about ketamine being "very safe" to "considered safe" to help allay perception that I may think it is something to be taken lightly. Any IV drug therapy should be considered seriously, including bisphosphonates.

This is a good time for discussion about the use and safety of ketamine. Purplefoot need not fear ketamine being a "horse tranquilizer". The drug does have a stigma as a vet medicine. However it is used worldwide in diverse populations from toddlers to the elderly, from trauma to burn victims. Ketamine was originally used in field surgical settings by the military because it does not depress the airway like other anesthetics. It is currently used in developing countries in operative settings as its safety and ease of use allow it to be utilized in places that don't have a lot of high dollar equipment. It is considered safe to use in pediatric populations as young as 18 months for sedation in the Emergency Department, where no anesthesiologist is present. Its use is becoming much more broad and benefits are being found in new applications including treatment of depression when given at low doses.

Ketamine therapy for CRPS in the USA is not given in the "coma" doses first tried in Germany that some are familiar with. It is not even given in doses as high as those used for short term anesthesia. Treatment here is sub-anesthetic and typically done at a level that is given as an outpatient. My own dose is so low that when one of my doctors asked about my therapy she started chuckling. When I looked at her sideways, she said "I am laughing at your tiny little ketamine dose". It is about a 6th of what would be given for other purposes.

Don't worry, monitoring is constant and there should be a blood pressure cuff and pulse-ox on Purplefoot all the time. Ketamine exits the system quickly so in the event there is any problem at all, they can adjust the dose to pretty immediate effect.

Definitely agree!

Yes, stigma indeed. Which is why I'm glad you said it's not to be taken lightly instead of what you said in your previous post.

Alaina....Praying that this treatment works for you !

I won't even have to put it on my calendar because it's my oldest grandson's
16th Birthday and I'll be thinking of you.

Do you have problems getting an IV started?
I've been blessed with very good veins even after the chemo (which they said would shrink my veins forever).

Please keep us posted....you know we care !

Debi from Georgia

First, I would like you to know that your post is the reason that I registered for the Neurotalk Support Group today. I was browsing CRPS support groups looking for some that are fairly active and I came upon your post. Hopefully I will have some information to help you.

Next, I have to say that when I read that your PM is just now convinced that CRPS can spread, I actually checked the date of your post because I thought I may have read the date wrong. (2006 rather than 2016) I thought things were improving. I know that now more medical professionals are aware of CRPS, but it looks like we still have needs in this area. I was happy to see that you are being an advocate for yourself and therefore all CRPS patients. Thank you.

Now finally, I will get to the ketamine. I have been receiving ketamine infusions since early 2012. I broke my wrist in 2008 and was diagnosed with RSD soon after. My Primary Care Physician suggested that I make an appointment with Dr. Robert J. Schwartzman at Drexel University in Philadelphia, PA. I agreed to see him and had to wait almost 2 years for the appointment. During all those months, I learned as much about him as I could and I was impressed. He agreed with the diagnosis and noted signs of spread to my left foot. He recommended the 10 day out-patient ketamine infusion. After a lot of required testing according to his protocol, I finally started the infusion.

I can tell you that I was very nervous about the infusion, but I was provided with a great deal of information about the drugs that would be administered and their purpose. I can tell you that different doctors have different protocols. Each patient responds differently. Please keep that in mind as you read this. I don't know where your doctor trained, but his protocol had to come from somewhere, so ask him or his staff if that concerns you. I am a nervous Nell so everything concerns me.

My infusion started at low doses and gradually increased over the 10 days. The two nurses in the infusion suite are there constantly to monitor blood pressure, oxygen levels, and the three lead EKG. Alarms will ring if there is a poor reading. This reassured the nervous Nell. Blood tests are required after the infusions to check for liver function. My liver was not happy, so I was unable to follow the original protocol. After the 10 day infusion, I was only able to receive the two day booster every 3 months. I have been receiving the boosters for over 4 years. I have had brief periods of remissions and at one point I thought maybe I could stop. It always comes back. I broke my right foot 2 years ago. and that resulted in more spread. I do get relief from the ketamine, but sometimes a booster does not work as well. I usually get 2 good months and then the third month the pain starts to increase but rarely to very high levels. Overall I am pleased with the results.

Just some extra info: I am very tired after the infusion and my husband usually takes a wheelchair to make it easier on him and on me. Other people walk out of the infusion suite without any problem. I thought it was just me but there is a gentleman who is a big guy and he reacts like I do. Again, everyone is different. I have had hallucinations, some funny and some not so much. I am able to remind myself that it is only the ketamine and it will go away. The nurses will also reassure patients if necessary.

In addition to the ketamine and Versed, I also get Benadryl and Zofran for nausea. Toradol is available for headaches. My boosters are 200mg of ketamine over 4 hours. Talk to your doctor or his staff. The more information you have on the drug protocol and how you will be monitored, the more relaxed you will be.

Take it easy for a few days after the infusion. Let your body rest and let your brain reset. Avoid doing things that can result in injury, but do keep moving. Not everyone gets good results after the first infusion. I have heard some people say that it took several boosters before they knew it was helping. Don't get discouraged.

I hope some of this has been helpful. Let me know if you have any questions. You will be in my thoughts and prayers.

Shay

Hi Shay,

Welcome aboard. I know Alaina will appreciate your thoughtful and informative post. Especially considering you had to start an account just to write it!

Thanks for sharing your experience.

Hello Shay and welcome to Neurotalk. Thank you for joining and sharing your experience here. I truly appreciate it.

I do have a tendency to get a little nervous when going in for any type of procedure, which does not help at all for the pain. My PM does seem to be fairly knowledgeable and somewhat up to date about CRPS with the exception that he did not believe in it spreading before I started to show signs of spread. He does reference Dr. Schwartzman's work quite often, but since my PM only does a 5 day infusion, he apparently does not use the same protocol. He mentioned that he will be starting at a low dose and working up to around 70 mg/kg, given over a 4 hour period and adjusted based on how I tolerate the infusion. To be honest, I do not know if that is a total dose, or an hourly rate. I guess that is another good question that I could ask this week before going in.

I do have a wheelchair, but there are several at there office for wheeling patients in and out. I have only had to use one of theirs the day I had the trial SCS implanted. I am figuring that I will likely need to use one again come next week, but I am fine using one of theirs again.

I was already figuring that I would be taking things easy for a few days after the infusion. I was invited to my cousins wedding on the Saturday following the infusion. Not knowing how I would be feeling, I responded that I am hoping to make it, but it is very unlikely that I will.

Again, welcome to Neurotalk, and Thank you! This is a fairly active board. I hope to see you share some more of your experiences on other posts.