This is crazy question?
 

I have had RSD since 1986, total body, including internal, have had too many blocks to count, sympathectomies before they realized they don't work I live in Florida traveled to see Dr. schwartman twice, have seen Dr. Kirkpatrick a couple of times.
The Dr.s say I'm not a candidate for ketamine, don't understand.
My question is to the people who have had any kind of ketamine treatment, if the ketamine is so great, why do so many still have to stay on the meds they were on? I thought the whole reason for ketamine was stop the pain, to me that means we would be able to get off the crappy meds we take, excluding heart meds or such.
Any answer would be appreciated, then maybe I could again approach my Dr. abou this.
Thanks, Wendy

I havent had Ketamine but from my understanding of it, its just like a block. you have to continue the treatment over a long period of time in order to get some type of result. i have had mulitple blocks as well but when i switched to a new doctor they told me that the blocks caused a high rate of paralysis in children so i am not getting any more blocks... ever! instead of the blocks i do physical therapy, and believe it or not swimming actually helped me alot. i dont know if you can swim or if you would want to try, im just giving suggestions. i hope you find some relief soon :hug:

I do, do P.T. and I do swim, I have a heated pool in my back yard. But am still confused as I have had at least 1oo blocks and all the other treatments, what makes the ketamine so different if used like a block? just wondering
Your friend Wendy, thanks

Hi Wendy,

I've had 32 low dose out patient ketamine infusions since April 19th. I started with the 10 day protocol at Dr. Getson's in Marlton, NJ, and in Jul/Aug switched to a local doc in RI (WC court ordered) that has just recently started performing the infusions.

The biggest change for me is that I was able to get off the Fentanyl and Percocet within the first 6 weeks of starting the ketamine. I now take Fiorcet for headaches (I also have a triptan - Frova - for when I get migraines, which is much less often than before). It was my choice to go off the heavy pain meds, no doctor told me that I had to do it. I also returned to my FT job after a year's sick LOA in June (YAY!!).

Meds that I still take include Topamax, Cymbalta, Clonodine, Skelaxin and Ambien at bedtime. I tried to wean off the Topamax but I had trouble with my head. Occasionally I will take an oxycodone at night for my head, but not during the day when I am working. And I find that I am OK with that, the Fiorcet works fine. I also still use a lot Lidoderm patches and Voltaren gel. I have a script for a new med called Nucynta and I use that when the Fiorcet isn't enough for my head pain at work, I haven't noticed any noticeable impact from it yet.

The bad days and nights are still there at times, and I am always looking for ways to make things better. Stretches for my neck are really important, watching how I use my arms is really important, taking care of myself and getting enough sleep is really important. I went on a very low dose birth control pill because it seemed that my migraines were hormonally related, and I think that it has made a difference. And I exercise religiously - I am convinced that my long daily walks have played a huge role in keeping me mobile and reducing my RSD symptoms. As the ketamine decreases my pain levels, I have tried to conciously use my arms a little more, to increase my mobility. I think I've gotten some use back, not much, but maybe some....

I am really happy to be off the heavy opiods - I am so much more alert and capable! And I just FEEL better!

Have your doctors told you why you are not a candidate for ketamine? If you were to become a candidate, do you know whether your insurance would cover it?

If you have any other questions, please let me know. Good luck to you, XOXOX Sandy

Hi Wendy,
I did the 5 day inpatient ketaimine at the Hospital for Special Surgery in November and since have had 3 outpatient boosters with Dr. Shwartzman. I've also receive 2 cervical nerve blocks.

As for medications, before my inpatient, I was on every opiate you can think of, narcotics and on a collision course. I was in the ER at least once a week and even there my pain couldn't be controlled.

Since getting the ketamine treatments, on average my pain doesn't go over about a 2 and at most, on occassion I take a soma. My regular meds now include Mobic (anit-inflammatory), Neurontin (2800), Trazodone (1 to help sleep & prevent pain) and Klonopin to keep my nerves calm.

Before ketamine, I was on all of that plus Dilaudid, Oxxycontin, Morphine, Fentanyl, etc.

If Dr. Shwartzman said you weren't a candidate, I hate to get your hopes down but I do believe in him tremendously as I do Dr. Richman (my in patient Dr.)

Did he say why you werern't a candidate?
:hug:
Dawn

,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 Dawn, So you did the inpatient treatment of ketamine, was it recommended to you by Dr. S.? Did you have any of the problems that I have read about on hear i.e. the hallutions etc..

Now you say you have had boosters with Dr. S. how long will this continue or are you done, I'm just not understanding I guess are these just treatments that will go on for a long time?

I also loved Dr. S. but have read on the boards that he has changed his ways, when I was there he did blocks everyday for 2 weeks and gave you sooo much pain meds, now if I understood correctly he would like his patients off most meds.

My Dr. contacted him, and he knows whats been going on with me ever since I was up there and saw him, and he told my Dr. that he felt I was too far along with the RSD that he did not feel I would get much relief and possibly aggravate the whole situation with my RSD.

My neuro Dr. told me that I should have no more invasive procedures as I have already had so much. Thats why I had my PM contact Dr. S. and I guess that might be his feeling too.

Thanks for responding, hope to hear back
Wendy

Wendy,

My primary Dr is Dr. Richman in NY at the Hospital for Special Surgery. He does the inpatient treatments but does not do outpaitent boosters which is why he sent me to Dr. Shwartzman for them.

The inpatient is different for everyone depending on alot of factors. I did have hallucinations, was weaned off all of my opiates and narcotics (thankfully), had lumbar epidural blocks and brachial plexus blocks done to try to see if there could be a neuroma.

Dr. Shwartzman and Dr. Richman share the same philosophy. If the ketamine works for you the first time, keep going and get the boosters as this will continue to keep your CNS calm. I will most likely be getting boosters or going inpatient again at ties for the rest of my life. I had RSD for ten years before it was diagnosed. Thankfully, I had alot of positive factors for ketamine and it did work for me, it doesn't for everyone. One of the things I love about these doctors is they won't give you false hope and if something isn't likely to work for you, they wont lie to you and do it anyway.

As for Dr. Shwartzman's feeling on meds, there's more research being done every day and at this point it's known that narcotics and opiates will actually prevent the ketamine from working. He has prescribed 2 nerve blocks for me so far with a different Dr. there at Hannehman but he's never prescribed any pain meds and thankfully I don't need them since ketamine.

I am truly sorry to hear your story but honestly, as frustrating as it must be, the total amount of meds you're on really isn't bad. If you can get through the day on those without being in horrible pain, that's actually really good. I know the loopy and fuzzy headed feelings and forgetfullness are annoying but alot of that is just RSD and the rest you can get from the meds I do take, like Neurontin.

I think alot of people almost think of ketamine as a cure which it is not. It does help dramatically calm the CNS when it works and reduces pain alot (depending on the individual) and can restore mobility to limbs. However, it is not once and done for most people unless it's within the first three months.

Until a cure is found, rather then keep fighting and stressing the CNS more, I think people including myself need to accecpt that the RSD is here to stay, now it's up to us to find the best way to live with it and hopefully through meds, ketamine, lifestyle changes, etc we'll take charge of it the best we can and if we get a remission, great.

Dawn

You have been thru alot too but seem to be on the right track.

I think you are right, that maybe I was thinking this was ,not a cure all, but the closest thing to it.

The meds I'm on just take the edge off I'm still a good 7-8 but I refuse to take any more. too many side effects. I was also thinking that maybe because my B/P is always very high even on the B/P meds that I take, that this might be one reason maybe that the Dr.,s don't want me to do the ketamine. Have you ever heard of this?

How long have you had RSD? I know too long,right. You have a great attitude about the realities of RSD, I do most of the time, but being rejected for the ketamine discouraged me especially because I still don't know exactly why, I see my Dr. Friday and we will be figuring this question out, the reasons that no one wants me to even try the ketamine.

Congrats to you for really getting relief and being able to stay off the bad meds. and for explaining to me some of the questions I had I am still a little confused about all of this but glad that you had a good experience.

Thanks Wendy




















































had every day and at this point it's known that narcotics and opiates will actually prevent the ketamine from working. He has prescribed 2 nerve blocks for me so far with a different Dr. there at Hannehman but he's never prescribed any pain meds and thankfully I don't need them since ketamine.

I am truly sorry to hear your story but honestly, as frustrating as it must be, the total amount of meds you're on really isn't bad. If you can get through the day on those without being in horrible pain, that's actually really good. I know the loopy and fuzzy headed feelings and forgetfullness are annoying but alot of that is just RSD and the rest you can get from the meds I do take, like Neurontin.

I think alot of people almost think of ketamine as a cure which it is not. It does help dramatically calm the CNS when it works and reduces pain alot (depending on the individual) and can restore mobility to limbs. However, it is not once and done for most people unless it's within the first three months.

Until a cure is found, rather then keep fighting and stressing the CNS more, I think people including myself need to accecpt that the RSD is here to stay, now it's up to us to find the best way to live with it and hopefully through meds, ketamine, lifestyle changes, etc we'll take charge of it the best we can and if we get a remission, great.

Dawn[/QUOTE]

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

wswells,
Ketamine is just a treatment like the other treatments...like blocks, or SCS or therapy. Some people are able to come off meds with some treatments and some can't. The thing is ketamine is a treatment, it is not a cure. It has been proven that ketamine does not stay in the body. I have been told the ketamine coma would be best for me- to me it is too risky for not being a cure. Coma, then 2xweek boosters, then 1xweek, then every other week then every month. Its like a total of 5 months of treatment that might only give 3-6months help and the cost is ridiculous. I dont want to have to go thru weeks & months of boosters that wont last in my body. I think it would be more of a hassle needing someone to drive me a distance, stay for the infusion and then drive home again. It just doesnt seem worth it to me. I would rather get up and take my meds and not be bothered. Yes i hate meds. Unfortunately, meds have side effects that i hate but so does ketamine. I am hopeful that someday they will mix ketamine and another drug so that the results will last longer in the body.

Hi Wendy,

I have not had ketamine treatments. I only know what I've read here and researched on it.

I would think the reason your doc says you are not a candidate is because ketamine works best when used early in the RSD course. If you are alreay internal/full body, I would think it's too late for the ketamine to make a marked difference for you, which stinks.

Hang in there.....

[QUOTE=wswells;734217]You have been thru alot too but seem to be on the right track.

I think you are right, that maybe I was thinking this was ,not a cure all, but the closest thing to it.

The meds I'm on just take the edge off I'm still a good 7-8 but I refuse to take any more. too many side effects. I was also thinking that maybe because my B/P is always very high even on the B/P meds that I take, that this might be one reason maybe that the Dr.,s don't want me to do the ketamine. Have you ever heard of this?

How long have you had RSD? I know too long,right. You have a great attitude about the realities of RSD, I do most of the time, but being rejected for the ketamine discouraged me especially because I still don't know exactly why, I see my Dr. Friday and we will be figuring this question out, the reasons that no one wants me to even try the ketamine.

Congrats to you for really getting relief and being able to stay off the bad meds. and for explaining to me some of the questions I had I am still a little confused about all of this but glad that you had a good experience.

Thanks Wendy


Wendy,
I've actually had RSD for about ten years but was only diagnosed at the Hospital for Special Surgery this past fall. Before that, I had 3 cervical surgeries (disc fusions, laminectomies, etc, both posterior and anterior) and lumbar laminectomies. I had a surgeon who thought he was a god and never stopped to consider that maybe my problem wasn't one his repeated surgeries could fix. When he should have referred me to pain management, he instead performed more surgery.

Other then those surgeries and my RSD which has spread from my head to my toes on the left side, I'm the picture of great health. I don't know if any medical conditions you may have could be a factor. My primary RSD doctor also felt I would be an excellent candidate due to my age (38) and my past responses to anesthesia. Each time I had it for different surgeries, I had full relief for about 6 weeks (which I thought was from the surgery). Turned out is was from the anesthesia because the pain returned each time with a vengeance.

Before the ketamine, my pain levels were off the scale to the point ER doctors could no longer get my pain under control without risking my life. Ketamine has been a godsend for me but I do also know it isn't a cure and what's more important than anything in fighting this is understanding it and yourself as well as you can.

Collect as much information as possible, read the articles,pay attention to your triggers and find what you can do to counteract them.

Most importantly, never give up hope.
:hug:

Wendy,

I have had 3 -5 day inpatient ketamine procedures and used the same doctor's mentioned , Dr. Richman for inpatient and he was my PM doctor also and Dr. Schwartzman for my boosters. The ketamine did a tremendous job for most of the symtoms. During my treatments I did get all of my normal pain meds. and it was not even expected of me or even asked if I wanted to try.I was also going through surgeries to correct a injuired arm/elbow, that might have been the thinking. It could also have something to do with all the changes in the medication arena when it comes to narcotics. I believe it's the new laws that are being forced on doctors currently. I also have heard that there has been some problems with patients taking to much medication while going through ketamine treatments and problems have arose. Currently I am on really nothing to speak of. I have gone off most of everything over the years. I also believe patients have other lingering issues that might result in the ketamine not giving the best results. So it's a combination of many, many things. The best advise I can give is to find the best in the field if you are considering ketamine before you begin any treatments.



Gabbycakes

Dear Wendy and Finz,

I wouldn't let anyone tell you that if you want to try a treatment that it might not work for you. How are you ever going to know if you don't at least give it a shot???? Ketamine gave me my life back. I tried so many other things first, spent endless hours on the road and at doctors' offices....

Some people don't get a chance to try ketamine until they are 10 years into RSD. And they find that they get relief from it. Have you sought another opinion.

Finz - Since you are from N.E, I thought you might want to know that there is doctor in Pawtucket, RI doing ketamine now. Let me know if you would like his contact info.

Peace, Sandy