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 12-10-2015, 10:36 PM #1
Inspiretoday Inspiretoday is offline
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Default Finally approved! 3-5 day Ketamine infusion starts next week!

Hello all! I am so excited that I am nearing my ketamine infusion which starts next week!! My CRPS has spread from both feet to me teeth as well and I have battling staying out of a wheelchair for a few weeks. I am really hoping this works but I'm very nervous. From those of you that have had the inpatient 3-5 day infusión your experince? Music? Movies? Needing someone there? Can u bathe? What foods can you eat? I've also read that people get bored... Does this happen,?
Any insight can be helpful and appreciated. Thank you all for you support on bad days and always giving sound advice! I hope you all are doing well!
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Old 12-10-2015, 10:55 PM #2
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eeeek! I am so happy for you! That is great news!

I can't say a darned thing about inpatient infusions as my outpatient ones are no analog. I just wanted to say congrats and my thoughts will be with you for a comfortable and successful treatment. Let us know before you go so we can send healing vibes your way.

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Old 12-10-2015, 10:57 PM #3
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Great news! Do you mind sharing where you are having the treatment and if your insurance company is covering it/which insurance you have? Congratulations and hoping for the best outcome.
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Old 12-12-2015, 08:57 AM #4
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I will be receiving treatment at University Of Virginia Hospital. My insurance is Blue Cross Blue Shield- Anthem. The docs made a big deal about it possibly not being approved but when the nurse put it through for approval- they were able to approve it within 3 days. I've also tried most everything except a SCS.

I am very excited! I go in Tuesday
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Old 12-15-2015, 08:47 PM #5
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Quote:
Originally Posted by Inspiretoday View Post
I will be receiving treatment at University Of Virginia Hospital. My insurance is Blue Cross Blue Shield- Anthem. The docs made a big deal about it possibly not being approved but when the nurse put it through for approval- they were able to approve it within 3 days. I've also tried most everything except a SCS.

I am very excited! I go in Tuesday
That's my alma mater (not the med school, unfortunately). It's a great hospital system, though, and I hope you have a fantastic and successful experience. I also have BCBS so I'm hoping my wife will inherit your good luck.

Keep us posted on the treatment. Best wishes.
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Old 12-17-2015, 06:41 AM #6
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Wow, that is GREAT news. I can't speak to the procedure personally, but have sure seen some good results with some people.

Best of luck to you; you will do well. And please update us about how things are going when you can!!
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Old 12-19-2015, 09:12 AM #7
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Hey how you doin'? I hope you are home and feeling good! Thinking of you and sending soft hugs.
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Old 12-28-2015, 08:47 PM #8
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Default How are things going?

My son has been diagnosed with rsd and has been in constant intractable pain for almost 2 years now. I am having a hard time finding good knowledgeable clinicians in the Sacramento area and am seriously looking at ketamine infusions. I'd be very grateful if we could chat so I might learn what you've learned in your journey.
Where did you get your infusions and who was your provider?
I'm looking at out of state because I can't find anything here.
My best to you,
Susan
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Old 12-28-2015, 09:58 PM #9
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Quote:
Originally Posted by susieh View Post
My son has been diagnosed with rsd and has been in constant intractable pain for almost 2 years now. I am having a hard time finding good knowledgeable clinicians in the Sacramento area and am seriously looking at ketamine infusions. I'd be very grateful if we could chat so I might learn what you've learned in your journey.
Where did you get your infusions and who was your provider?
I'm looking at out of state because I can't find anything here.
My best to you,
Susan
Dear Susan, Welcome to the forum. I am sorry to hear about your son. I hope that we are able to provide you a place for sharing and support. There are many options for treatment but ketamine does show good evidence in studies. Several protocols are used. I receive a different one than InspireToday and am getting good results with it. I have documented my experience with low dose outpatient infusions given over a period of months. The search feature on the forum will help you find several other posters experiences with ketamine as well.

You will find several California providers on this list of ketamine doctors.
http://www.ketamineadvocacynetwork.o...der-directory/

and here's one in Sacramento
http://www.debruinmedicalcenter.com/...ating-rsdcprs/

If you have not seen Dr. Pradeep Chopra's video "CRPS Diagnosis and Management" you will find it full of helpful tips and treatments.
https://www.youtube.com/watch?v=s3LKhOZ8mAM

One of the very best resources for you might be Stanford's Pain Program. They are at the forefront of CRPS research and are currently studying Low Dose Naltrexone. They do many treatments not offered elsewhere including botox nerve blocks and ketamine. You are in easy striking distance. If I were in driving distance of them, I can tell you I would be there.

Hold on to hope. Improvement is possible and is actually the norm with 80% of people showing improvement over time according to Cleveland Clinic. If there are pain contributors that need to be addressed hunt them down. The disease is easier to treat and beat with underlying problems treated to the degree possible. Keep those muscles working as much as possible without flare and don't give up.

Come see us and let us know what happens.
Sending hugs and healing love,
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