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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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10-09-2014, 12:09 AM | #1 | ||
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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!
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"Thanks for this!" says: | Vrae (10-23-2014) |
10-11-2014, 10:30 AM | #2 | ||
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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 |
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"Thanks for this!" says: | Vrae (10-23-2014) |
10-21-2014, 12:56 PM | #3 | ||
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Do you by any chance know if they even do the in-patient? If not, do you have a # I can call to get more info? Do I have to be military to go there? Thank you so much! I hope you can get yours to go into remission. Sounds like they caught yours early enough that it might. Take care! Denise |
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"Thanks for this!" says: | Vrae (10-23-2014) |
10-22-2014, 01:11 AM | #4 | ||
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My daughter has had inpatient Ketamine with Dr. North twice now. He is a wonderful doctor and his fellows (you will see them the most) are wonderful. I know a few other people who have go see him too. We would all say it is/was diffidently worth the trip. You have to have someone stay with you during the infusion which is in the ICU. The nurses are great and very helpful. There is also a place you can stay after and before the infusion call the SECU house. It's $30 a night and you will need to stay at least 1 night after infusion (we usually stay 2 nights after infusion) They also have a dinner every night for their guests. Sounds like you will drive as we have to fly home (Illinois) so maybe you would not have to stay if you don't want too. Please give this treatment a try, it has helped my daughter so much, best of luck to you.
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"Thanks for this!" says: | Vrae (10-23-2014) |
10-22-2014, 08:51 AM | #5 | ||
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Welcome joopiter296.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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10-22-2014, 02:21 PM | #6 | ||
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Denise |
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11-28-2014, 03:13 PM | #7 | |||
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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. |
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11-28-2014, 05:41 PM | #8 | ||
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Welcome Gunny Fitz.
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"Thanks for this!" says: | Gunny Fitz (11-29-2014) |
10-23-2014, 10:53 PM | #9 | |||
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Hi Joopiter296,
Gosh we're almost twins, but I'm afraid mine has spread all over the place I do not live in your area, but I do have an initial consult for out-patient ketamine the first week of November. I can't seem to find anyone accepting new patients for in-patient in my area and there are just a handful of practitioners in the state that even do the ketamine treatments; so I was pretty stoked just to get this appointment. Like you I have no idea about what insurance will cover. I suppose I'm about to find out. Best of luck with your treatment! Please keep us posted!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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10-25-2014, 07:37 AM | #10 | ||
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