NeuroTalk Support Groups - ketamine infusion for RSD/CRPS

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - ketamine infusion for RSD/CRPS (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/210668-ketamine-infusion-rsd-crps.html)

Quote:

Originally Posted by ShaggyChic_1201 (Post 1105664)

The Hospital for Special Surgery in NYC is starting a trial for CRPS. 5 days inpatient plus epidural, 4 hr infusions at 1, 2, & 3 months after, plus f/u visits.

Trial commitment is 6 months and probably won't begin until January, 2015.

Control group gets epidural and sedative, which would offer some relief at least.

646-714-6270 - Jodie

:hug:

Shaggy

Here is the link to the trial: http://clinicaltrials.gov/show/NCT02094352

Are you sure that the control group will be getting an epidural infusion with pain medications? It reads to me like it will be a 'saline' epidural infusion?

Thanks for sharing,
Tessa

the control is saline with sedative in IV as well as an epidural.

Quote:

Originally Posted by ShaggyChic_1201 (Post 1105802)

the control is saline with sedative in IV as well as an epidural.

I called today to clarify and the control group will be given a 'saline epidural infusion and booster saline infusions'. They explained that it would interfere with the control group to give medications of any kind as it would skew the results. At least that was my understanding in the explanation given to me.

That is the thing with trials since one never knows if they will be the one receiving the placebo.

Good Luck!

Does anyone know what medications you can and can't be on prior to the in-patient infusion. I did read where you have to get off of all narcotics 6 weeks prior. But I'm on alot of other stuff... sleep meds, antidepressant, benzodiazepines, etc. (all being prescribed by my PCP), but I don't know if there are any of those others I need to be off of for the treatment. Anybody know or have experience with that?
Thanks!

Quote:

Originally Posted by zookester (Post 1105804)

I was just at the hospital and spoke to the study clinical leader. I confirmed...the epidural is not saline, it is an anesthetic. Everyone gets some sedation and saline, tho not everyone gets ketamine.

I'm still waiting to see if my treatment worlked like we're hoping it does. My doctor was originally going to do a Ketamine Infusion. Recently, in June, my Crps spredict to both my feet and lower legs, by October it was quickly advancing to become full body.I even had a rare spread to my face, throat, and mouth. Not fun! And had the worst flare I've ever had by the end of Oct and into Nov. We'd been waiting on an answer from a hospital in Utah (I live in Wa State) for aboutique a month, my doctor decided that with my history of the postpartum depression, and my extreme sensitivity to medications, to use Lidocane for the infusion instead. I'm really lucky as not only did she know how to perform so I wouldn't have to travel, she was able to get my insurance to approve it immediately! I had barely any symptoms, though I would warn that while having either Ketamine or Lidocane your symptoms can fluctuate ... a lot. Apparently the way both medications effect the nerve and cell structures, it flares and calms them. Kin of trying to "reset" the system.
I'm not sure of the symptoms or side effects of Ketamine, but I know they're very similar.
I was given a 70% chance to have a reduction in pain from 30-50%! Now I don't know what your odds or differences between our symptoms, but if it's anywhere near mine it's worth a shot!
I don't know the doctors near you but wish you the best of luck! And hoping you find relief!

Quote:

Originally Posted by joopiter296 (Post 1106993)

I was able to still take my oxycodone, but had to stop talking Methadone. Lidocane, I think Ketamine as well, can cause heart arrhythmia. So can Methadone. You cannot take both, as it increases the risk a lot more. We even upped my dosage of oxycodone to make sure I didn't start to have withdrawals from the methadone. I believe it's medications that can affect or cause problems with your heart rate and heart beat.
:winky:

Quote:

Originally Posted by joopiter296 (Post 1102034)

I am considering the in-patient ketamine infusion if I am accepted and the doctor I'm going to see recommends it. I have had CRPS in my right foot/leg for 12 years now and have run the gamet of treatments from all kinds of meds, PT, nerve blocks, a continuous epidural, and trial spinal cord stimulator. When my pain spikes, nothing relieves it (except sleep)! What works best is keeping it still long enough until the pain lets up enough to very gradually do PT, but that generally takes a few months after a flare-up. I recently fell very hard on my affected foot and my pain skyrocketed like never before. I live in Virginia Beach, but the closest place I can find that does the in-patient ketamine is Carolinas Pain Institute in Winston Salem, NC (about 4+ hours away. Is anyone out there familiar with a closer place? Or does anyone even have any personal experience with this particular place and Dr. James North? Everyone there I have talked to has been very helpful over the phone. Also, any info that anyone can give me who has gone through an in-patient ketamine (good and bad) would be appreciated! Thanks. Wishing you all days with less pain!:)

I live in CA. and I am interested in this ketamine infusion. I have been dealing with RSD for over 18 yrs and having a horrible flare-up. I am wondering if this is something Medicare will cover? LISAR624

New Member From NOVA!

Quote:

Originally Posted by TerriLHF (Post 1102499)

Hi,

I have not done the in-pt infusion but I have had 3 out-pt high dose(500 mg in 1 day) 1 day infusions. 2 of the 3 have worked very well( the last one being on Tuesday...holding strong so far). The one infusion that didn't hold was because we tried to half my dose of Lyrica...didn't work.

The in-pt infusions gives you a much higher ending Ketamine level that will hopefully give you good pain relief.

I also have R foot/ankle CRPS. I am in Northern Va and am being treated at Walter Reed National Military Medical Center. My CRPS resulted from ankle surgery in May...then I developed a blood clot in the leg right before my nerve block was supposed to be done, so that is why we have gone right to Ketamine.

Have had PT, and have Dr's in Pain Management, Physical Medicine ( CRPS specialist), Foot & Ankle Surgery, Ortho surgeon and a Primary Care Dr.

I have had to fight to get every one of them to be aggressive about CRPS except for the specialist. She is going to try a different therapy on my foot & ankle called Neuroprolotherapy. They have used it on the Wounded Warriors with CRPS and have good success with pain reduction and remission of CRPS.

Wishing you the very best!!!!

Terri:)

Greetings Terri (and everyone else!)

My story is a long one, and I just signed up on here today after viewing this thread conversation about Ketamine Infusion and all. I am just learning about this treatment recently after becoming a patient of the last Navy Pain Management Director at Walter Reed, who is now a civilian - retired to start his own Pain Management practice here in Northern Virginia.

Would very much like to learn from anyone who has had this procedure done and personally msg you Terri? I sent you a friend request but for some reason don't have the ability to send you a personal msg? This forum looks very similar to all the others I am on, but i don't see the "Send a Private Msg" link under ones name? Any help on this folks? Is it due to me being brand new here?

Readers Digest story - I am a 90% Disabled Marine Corps Veteran who did one combat tour where I was shot, mortared, RPGd, and after my 3rd IED that was all my brain could take. I have been classified with Traumatic Brain Injury, PTSD, Cervical Spine damage, and a myriad of other issues which are considered "Service Connected" per VA terms. I have done just about every treatment known to try and live with the chronic pain I am in, and am obviously dependent (not addicted) to opiate pain meds. I detoxed once in an intense in patient PTSD program, with medication assistance, but due to the severity of my pain went back on them to help me live with it.

Now I am discussing this Ketamine procedure with this Dr who supposedly wrote the book on it at Walter Reed, but don't personally know anyone who went thru it themselves. He stated he has treated hundreds of service members with this drug while there and it also has great effects on those with PTSD, depression and anxiety along with the pain!

If anyone can assist me in this quest for more info, other than what I have spent hours reading online, PLEASE PLEASE contact me somehow off here?
If there is a way to reach me via personal msg please do so, if not we shall figure out a way as they probably don't want anyone posting their email address in threads right? Thank you all and I am anxious to read more within this forum!

Semper Fidelis

Gunny

Ps. The hummvee I was in on last IED.

Welcome Gunny Fitz. :Wave-Hello: