Ketamine Infusion for Treatment of RSD/CRPS

[Born in Brooklyn]

This is a procedure I'm considering for the treatment of a long history of RSD. Is there anyone who is familiar with it? My understanding is that treatment can consist of low dosage which graduates to higher and higher doses. It has some pretty rough side effects, hallucination, sometimes they put the patient in a coma. My understanding is that what they are trying to do is basically restart the nerves that are affected by this disease and there has been some success - does anyone know somebody who tried this - does anyone know a doctor who does this? I am desperate to get information on both sides of the issue - Thank you

[aLifeUncommon]

Born in Brooklyn wrote:

This is a procedure I'm considering for the treatment of a long history of RSD. Is there anyone who is familiar with it? My understanding is that treatment can consist of low dosage which graduates to higher and higher doses. It has some pretty rough side effects, hallucination, sometimes they put the patient in a coma. My understanding is that what they are trying to do is basically restart the nerves that are affected by this disease and there has been some success - does anyone know somebody who tried this - does anyone know a doctor who does this? I am desperate to get information on both sides of the issue - Thank you

We do not do this in our practice but I'll talk it over with some of the docs and get their thoughts on it.
We've used SBG's with some temporary success.
I'll let you know what I find about it.

[Born in Brooklyn]

aLifeUncommon wrote:

<quoted text>
We do not do this in our practice but I'll talk it over with some of the docs and get their thoughts on it.
We've used SBG's with some temporary success.
I'll let you know what I find about it.

Thanks - the SBGs are only holding for about 10 days, maximum. I can't be going through these things every two weeks - it's too much. From what I have learned about the Ketamine infusion, there are high dose and low dose - I'm trying to get as much info as I can - I see the Dr who does them tomorrow at 5:30 - my home e-mail is [e-mail] - if you get any input that you think might be helpful - feel free to use my e-mail - or this forum (no one else uses it, obviously LOL) which ever you prefer.
Thanks again.

[LAldinger]

Dear BIB:
I am currently undergoing this treatment with Dr. Schwartzman in Philadelphia. I don't know if you have now made a decision or not, but I would be happy to communicate with you in regard to my experience. However, you must remember that every single person will respond differently to this treatment as we are all put together so differently!
I've had RSD for 7 years and have had multiple surgeries and other procedures, to include a spinal cord stimulator. The doctors who specialize in treating RSD do not like patients to share your symptoms and/or treatment results with other patients as it can cause a lot of problems emotionally. I understand where they are coming from, but I see nothing wrong with sharing treatment options with other patients.
Best regards,
L. Aldinger

[Born in Brooklyn]

LAldinger wrote:

Dear BIB:
I am currently undergoing this treatment with Dr. Schwartzman in Philadelphia.L. Aldinger

Hi - thanks for responding.

I haven't made up my mind yet. My RSD dr. wants me to have 1 more block - and then perhaps we can look at the procedure. My boss knows Dr. Schwartzman, Dr. S was here in Denver just before my shoulder surgery which was 4/26 - They met with another Dr. here who will be doing the 2 hour infusion (low dose). My injury comes from a fall at work, so Workers' Comp is my insurance - and everything has to be approved through them. I have been doing a lot of research about the procedure - rsdfoundation.org has alot about it on their site. I want to be sure I make an informed decision and look at all the factors involved. Now that my shoulder is fixed, we're hoping that the RSD will quiet down because the trigger is fixed - but I seem to be slipping back a little. The physical therapy for the shoulder surgery is causing more flare up of the RSD - I called and requested approval for a block sometime soon - then I'll go from there. My last block was 5/15 - I'm hoping to make it thru most of June before I run screaming to the surgi-center for my block!! LOL trying to keep my sense of humor. I work in a lawfirm and have worked with other RSD victims over a number of years - I've been diagnosed with it since 1994 - first in my left leg, then my right arm - the leg is in remission, but the arm is being very stubborn. I try to stay active, which helps for me, and I have refused all medications or narcotics because I need to work and remain functional. This is getting too long...

[Born in Brooklyn]

I think it is helpful to share information about procedures - RSD does affect people differently, as do the procedures - so, I am treading lightly but want to hear about experiences. One of my biggest problems has always been that if there is .0001% chance of having a side effect from a medicine - I'll have the side effect. It's also nice to communicate with someone who understands what you are going through and commiserate - because unless someone deals with this disease, they have no way of knowing the devastating effects it can have. I don't have the worse case in the world, it's very persistant though. So, the battle becomes tiring and you also get tired of dealing with the whole thing - I'm sure I'm preaching to the choir.... I'm sorry. But one thing for sure, I go to NY to visit with my grandchildren in July and I want to be able to hug them and have them hug me back without it hurting. That shouldn't be too much to ask.... should it?

Thank you for your communication. Ask Dr. Schwartzman if he enjoyed Denver in April - he had lunch with a jewish lawyer from Brooklyn and his associate, a young woman with red hair and a doctor, first name John, who does the procedure - if you have an opportunity to ask him - tell him you communicated with the attorney's paralegal who has RSD and was about to have shoulder surgery - it should ring a bell. My boss called me either during the meal or right after to tell me to start the research on the procedure because he had just had lunch with Dr. Schwartzman and found out about it and thought it might help me. I'm very fortunate to have a good boss.

Please do keep in touch.

Marilyn

[aLifeUncommon]

Sorry it's taken so long to get back to you on this.
Talked to doc and he says they don't do them anymore because there is absolutely no effect on the RSD itself and the side affects of flashbacks are horrible.

Ketamine is a sedative/hypnotic. It's used to induce a somewhat partial sleep affect for some procedures, nothing more.

This is what I thought but wanted to get antoher opinion before I responded.

[Born in Brooklyn]

aLifeUncommon wrote:

Sorry it's taken so long to get back to you on this.
Talked to doc and he says they don't do them anymore because there is absolutely no effect on the RSD itself and the side affects of flashbacks are horrible.
Ketamine is a sedative/hypnotic. It's used to induce a somewhat partial sleep affect for some procedures, nothing more.
This is what I thought but wanted to get antoher opinion before I responded.

That's really surprising. My RSD specialist says they have been doing great things with it - even Workers' comp is paying for the 2 hour procedure. Well, the jury is still out on this - I see the RSD dr tomorrow and I'm scheduled to have one more SGB and then we will make a decision. I'm doing pretty well in physical therapy with the shoulder recuperation - but I can't tolerate the therapist touching my arm and shoulder - so I'm in kind of a conundrum and trying to do most of the exercises on my own. I think pool therapy is next. I have some really good days and then I have some really bad days and then I get really tired of this and start to get a bit down.

Well, thank you for checking into it for me - I appreciate your help.

[judy in ca]

I am also considering the Ketamine treatment. One Dr in the area does a one day 100 mg/hr plus ketamine pills for 2 weeks. I am afraid to start at this dose, and am going to se an anesthetic pain dr next week to see if he would give me 30 mg/hr treatment to see how that goes. I am very sensitive to medication, so am very cautious.
Judy

Born in Brooklyn wrote:

<quoted text>
That's really surprising. My RSD specialist says they have been doing great things with it - even Workers' comp is paying for the 2 hour procedure. Well, the jury is still out on this - I see the RSD dr tomorrow and I'm scheduled to have one more SGB and then we will make a decision. I'm doing pretty well in physical therapy with the shoulder recuperation - but I can't tolerate the therapist touching my arm and shoulder - so I'm in kind of a conundrum and trying to do most of the exercises on my own. I think pool therapy is next. I have some really good days and then I have some really bad days and then I get really tired of this and start to get a bit down.
Well, thank you for checking into it for me - I appreciate your help.

[Born in Brooklyn]

judy in ca wrote:

I am also considering the Ketamine treatment. One Dr in the area does a one day 100 mg/hr plus ketamine pills for 2 weeks. I am afraid to start at this dose, and am going to se an anesthetic pain dr next week to see if he would give me 30 mg/hr treatment to see how that goes. I am very sensitive to medication, so am very cautious.
Judy
<quoted text>

You're right to be cautious - I'm also very sensitive to alot of meds - I saw my RSD pain dr today. I'm going to have the stellate ganglion block on 6/28 and then see where it goes - I'm just not ready to decide yet. Good luck - keep me posted on how it goes!!

[suthin_man]

I'm 55yr old RN with CRPS right leg from work injury.First L-block very helpful as was second except for the DVT's and PE's that occured 3 days later,had to have filter placed to prevent more clots.My Internist dumped me,Now no body will touch me,except hematologist, because of the above.Pain Doc is useless.Am tired of fighting system(W/C,Docs,Pharmacys,PAIN ,etc)and now the pain has started to occur in my left ankle/foot.Tired of taking narcotics and sleeping meds to help.Suggestions?Good Doc/clinic in south?HELP!!!! Thanks

[aLifeUncommon]

suthin_man wrote:

I'm 55yr old RN with CRPS right leg from work injury.First L-block very helpful as was second except for the DVT's and PE's that occured 3 days later,had to have filter placed to prevent more clots.My Internist dumped me,Now no body will touch me,except hematologist, because of the above.Pain Doc is useless.Am tired of fighting system(W/C,Docs,Pharmacys,PAIN ,etc)and now the pain has started to occur in my left ankle/foot.Tired of taking narcotics and sleeping meds to help.Suggestions?Good Doc/clinic in south?HELP!!!! Thanks

I work for an excellent pain management group but we're in Ga. I have no clue about Ms. docs.
I'm sorry about your situation. We see it every day.

[suthin_man]

Thanks, I would appreciate information on the pain management group that you mentioned. My wife and I,if you can believe it, are trying to sell our place here and move to the North Ga Mountains! I have to get out of this heat,humidity and hurricanes soon!I have been through all since Camille and have had enough. I hope that I can find a physician who will,at least consider my problems,work to find a solution and not close the door on me.I spent many years caring for people,as a nurse,and it's hard to have people turn their backs on me now. Look forward to hearing from you. Sincerely,suthin_man

[aLifeUncommon]

suthin_man wrote:

Thanks, I would appreciate information on the pain management group that you mentioned. My wife and I,if you can believe it, are trying to sell our place here and move to the North Ga Mountains! I have to get out of this heat,humidity and hurricanes soon!I have been through all since Camille and have had enough. I hope that I can find a physician who will,at least consider my problems,work to find a solution and not close the door on me.I spent many years caring for people,as a nurse,and it's hard to have people turn their backs on me now. Look forward to hearing from you. Sincerely,suthin_man

Let me know when you move up here. We generally only see folks that live in Gwinnett County which is where I live. Not too far from what is considered "north georgia".
I'd prefer not to give the name out on a public forum and I'd prefer to do it after you've made the move from Ms. to Ga.
Best of luck.

[suthin_man]

Thanks, I do understand your reasons. We are looking at Cleveland area so I want something no farther than Atlanta, closer if possible. Sitting or standing to long really lights up the pain receptors so drive has to be reasonable. I have suffered poor care so long I have lost a lot of faith in the medical community and it's gotten worse since Katrina. By the way, didn't expect answer so quickly. Sincerely, suthin_man

[aLifeUncommon]

suthin_man wrote:

Thanks, I do understand your reasons. We are looking at Cleveland area so I want something no farther than Atlanta, closer if possible. Sitting or standing to long really lights up the pain receptors so drive has to be reasonable. I have suffered poor care so long I have lost a lot of faith in the medical community and it's gotten worse since Katrina. By the way, didn't expect answer so quickly. Sincerely, suthin_man

Cleveland is a bit north of where the office is. One of our employees is there. But you might be able to be seen because there are no pain docs in that area.
Best of luck.

[suthin_man]

Thanks, hope to be up there before end of year. suthin_man

[judy in ca]

I am also considering ketamine. I have had RSD for 23 years, and not much works. One of the DRS does a 100mg/hr for 4 hours with ketamine pills folling for 2 weeks to put it in remission. I am kind of scared of that high of dose as I am sensitive to medication, so another Dr who I am seeing this week does a lower dose for 2 hrs, and I think that I wnt to do this just to see how my body reacts. I would love any info that you coule share. my e mail is [e-mail]
Thanks,
Judy

LAldinger wrote:

Dear BIB:
I am currently undergoing this treatment with Dr. Schwartzman in Philadelphia. I don't know if you have now made a decision or not, but I would be happy to communicate with you in regard to my experience. However, you must remember that every single person will respond differently to this treatment as we are all put together so differently!
I've had RSD for 7 years and have had multiple surgeries and other procedures, to include a spinal cord stimulator. The doctors who specialize in treating RSD do not like patients to share your symptoms and/or treatment results with other patients as it can cause a lot of problems emotionally. I understand where they are coming from, but I see nothing wrong with sharing treatment options with other patients.
Best regards,
L. Aldinger

[Lisa]

I was diagnosed with RSD 2 years ago. It's in my left lower leg. I've fought with WC for 2 years now, most currently with them saying that I will never progress past the point that I am now, and they see no further need for anymore treatments. I'm trying to see about a specialist in OHIO. My DR has HBO Therapy , Magnetic Therapy , and Acupuncture on the list of things they still want to try. I've had 5 SNB (sympathetic nerve blocks) with no relief. I've also been on 3 different medicines with no relief. I'm just looking for anything at this point. I see a pain specialist this week who wants to do Epidural cort. injections, I'm tired of people playing with my spine, they messed it up with the SNB's and I'm afraid to try anything else that involves my back at this point. Is there ANYTHING out there that I can suggest to my current Ortho?

[Born in Brooklyn]

Lisa wrote:

I was diagnosed with RSD 2 years ago. It's in my left lower leg. I've fought with WC for 2 years now, most currently with them saying that I will never progress past the point that I am now, and they see no further need for anymore treatments. I'm trying to see about a specialist in OHIO. My DR has HBO Therapy , Magnetic Therapy , and Acupuncture on the list of things they still want to try. I've had 5 SNB (sympathetic nerve blocks) with no relief. I've also been on 3 different medicines with no relief. I'm just looking for anything at this point. I see a pain specialist this week who wants to do Epidural cort. injections, I'm tired of people playing with my spine, they messed it up with the SNB's and I'm afraid to try anything else that involves my back at this point. Is there ANYTHING out there that I can suggest to my current Ortho?

Have you tried lumbar sympathetic blocks? I had them for my left leg when it was active. I also had Beir blocks, I have heard that they don't do them anymore - they helped some, but not permanently. They were about to perform a sympathectomy on me when I said "ENOUGH". I started walking on the beach near my home (when I still lived in NY). At first, I could barely walk from the car to the beach area. That was in February of 1997, by June of 1997, I was walking 7 miles a day. I continued my walking for more than a year and I have been in complete remission in my left leg since then. I have no pain, no hypersensitivity, no redness or swelling. The hair had stopped growing on my leg and it was becoming atrophied. Everything is normal now. As far as Workers' Comp, you can request a hearing or an appeal on their decision. Make sure you get statements from your doctors as to other avenues of possible treatment. Also, do your homework, gather as much information as you can... try rsdfoundation.org for the latest info and print up stuff and bring it with you to the hearing. You can fight them, don't let them bully you... They will always try to deny treatment with all kinds of excuses, but if you come back at them with some concrete information and a firm believe that YOU know what is best for your body and that you're not willing to take no for an answer - you may be surprises by the outcome. Good luck to you... please keep me posted on your progress!