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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Old 02-04-2015, 08:48 AM #1
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Cool Approved for Ketamine Infusion. I leave in 33 days.. YAY!

Hi everyone!

This has been a really long time coming... In 33 days will show up in Palo Alto, CA at Stanford and try their multidisciplinary approach that includes IV Ketamine. They tell me I will be in patient for 7-10 days. I'm guessing I'll need a couple more days at the hotel before I jump on a plane for home. I am so hoping this helps. I am hurting so damn bad it's just ridiculous and I am starting to feel like I'm running out of options, all while the progression is running rampant head to toe.

I did have a question. I have lost several teeth over the last couple of years and I have spread into my mouth. I have full body type II. I have another tooth that I know needs to come out. It's not really flaring right now, but I wonder if I should go ahead and get it pulled before I do this treatment or just not aggravate it. Really sucks too because I've been able to hide all the tooth loss until this one. If it goes, it will be noticeable. Anyone have any thoughts? Pull it now or wait?

Also anyone who's done what I'm about to do I would love to hear from you! Comments, suggestions ? Thank you!
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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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Old 02-04-2015, 12:27 PM #2
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I'd pull it asap.

You didn't mention going to the hotel early, but I would so that you can be as close to baseline as possible when you start treatment. Choose a hotel with a nice, warm pool!
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Old 02-04-2015, 01:13 PM #3
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Great news. I'm with Lit Love. Excellent suggestions. Get the darned thing out before treatment instead of risking relapse or aggravation of symptoms after. And yes, kick back at the hotel and do what you need to make travel easy and ensure success. I know we will all want to hear about your experience, they have some great doctors at Stanford. Carroll and Mackey both very at the forefront on research for pain. How exciting for you!

Sending happy thoughts for successful treatment,
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Old 02-04-2015, 07:50 PM #4
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Thanks! I think I will try and get it pulled quickly.

I would love to go early and relax a bit beforehand but they have suggested I stay 2-3 days extra on the back end, and since we were just there Jan. 16th for a few days, and will have to go again for follow up 4 weeks post ketamine, I feel like we're hemorrhaging money, so I don't think we'll be able to do either the early stay or the warm pool. We've found a good place to stay with Hotel San Carlos for our last visit. The beds are good, and it was a decent hotel at about $100 a night. They have an outdoor pool but not anything that looked overly inviting. Did I mention the bed was great? Shower was great too. Overall the room was nice. Shocking considering how expensive other hotels in the area are.

I am really hurting today. I hate to complain about weather because I know it's been crazy for almost all of us, but man.. these 30-40 degree swings with snow then sun are terrible! I am ready for this treatment! Even if it can just turn the volume down a bit.. that would be fantastic! That is my wish for all of us.
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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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Old 02-04-2015, 08:19 PM #5
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Adds up fast for sure. If the stay is too big a hardship it might be worth checking in with the medical center's social work/case management department. Many hospitals and most education affiliated medical centers have lodging that is underwritten by their foundation or another charity. Sometimes patients/family can self refer but often the social worker needs to make the referral. I have seen a lot of families finances saved by this service when needing extended care.

Best,
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Old 02-04-2015, 09:15 PM #6
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You might want to check Hotwire for hotel rooms. Often rooms near the airport will be less expensive and have nice warm pools, and then you could move to the closer location after a few days.
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Old 04-25-2016, 01:49 AM #7
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Default Share your Ketamine experience

Quote:
Originally Posted by Vrae View Post
Hi everyone!

This has been a really long time coming... In 33 days will show up in Palo Alto, CA at Stanford and try their multidisciplinary approach that includes IV Ketamine. They tell me I will be in patient for 7-10 days. I'm guessing I'll need a couple more days at the hotel before I jump on a plane for home. I am so hoping this helps. I am hurting so damn bad it's just ridiculous and I am starting to feel like I'm running out of options, all while the progression is running rampant head to toe.

I did have a question. I have lost several teeth over the last couple of years and I have spread into my mouth. I have full body type II. I have another tooth that I know needs to come out. It's not really flaring right now, but I wonder if I should go ahead and get it pulled before I do this treatment or just not aggravate it. Really sucks too because I've been able to hide all the tooth loss until this one. If it goes, it will be noticeable. Anyone have any thoughts? Pull it now or wait?

Also anyone who's done what I'm about to do I would love to hear from you! Comments, suggestions ? Thank you!
Hi Vrae. I am brand new to this forum and was reading about your plans to get your Ketamine infusions. Can you share how it went (that was a year ago) and how it is working for you please ? My husband has CRPS-2 from massive spinal surgery. It is up to his armpits. We are looking into various treatments and especially the Ketamine. We also live in Colorado.
Thank you !
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Old 05-23-2019, 03:48 PM #8
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Any update, Vrae? I'm considering similar treatment at Stanford soon.

thank you!
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Old 05-23-2019, 10:55 PM #9
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Hi calimama

Welcome to NeuroTalk; I hope that you will find the community as knowledgeable and supportive as I have .

This thread is fairly old so you may not get many responses here.

You might get more responses if you started your own thread in this forum.

Best wishes.
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