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)


advertisement
 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 05-01-2010, 03:54 PM #1
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
Default Ketamine- 10 days done

I have finally arrived home for a 4 day break between the 10 days of infusions and the start of the 2 day a week for a month protocol. Ketamine works extremely well for me so far!!! I am able to tolerate noise again with my ears!! I don't like it, but I can take it, which is a real change from how I was. I can wear a bra strap on my shoulder for the first time since my injury (11/06). My head no longer hurts terribly all the time, although it does ache a bit. I have one area of lingering pain in the back on the right in the occipital area, but that was always my worst spot. The pain in my legs, my hips, my arm, and my neck is gone. My appetite is spotty and I have lost some weight - the first weekend I had a lot of trouble with my stomach which may have been because I tapered too quickly off of Fentanyl.

Since it's only been a few days, it is too soon to tell whether this treatment is going to hold for a long time for me. I still have a month of 2 day per week treatments, and a month of one day per week treatments to go. The hardest part of all is the travel - I live several hundred miles away (in RI) from where I am being treated, so I am staying with my parents while getting the treatments. I need to get from RI to Jersey (fly or drive), then everyday my father drives me an hour and fifteen minutes each way to the doctor's office from their beach house at the Jersey shore. I owe my parents more than I can ever repay them!!

It was much more difficult than I anticipated to be away from my family and friends for the first 2 weeks...I am glad that part is over!

I have tried just about every other treatment for my RSD, and nothing else was nearly as effective as ketamine!! As most of you know, I am still fighting to get WC to approve these treatments. And even though United Healthcare has approved them, I need to pay Dr. Getson and request reimbursement from UHC because his office has assured me that it will not be anyhwere near what they require for payment. In the meantime, my parents have taken care of the payment end for me. The cost per day at his office in Marlton, NJ is between $1250-1500 to get better, in case anyone is wondering....

In the end for me, it came down to research - I had to find out who the docs were that had ketamine, (from Jim Broatch at the RSDSA) - paperwork preparation - I had to put together a package for each of them that I wanted to see, - and $$. Because both WC and my private insurance company came up short I needed to find financing for my ketamine treatments in order to get them.

What makes the least amount of sense to me is that the time and cost of the other treatments I have endured- 7 SGB, 1 LB, and 7 lidocaine infusions combined likely exceeds that of the ketamine. And they were not nearly as effective. Why bother? I've been diagnosed since June of 2008 and we've been kicking around all these different treatments, instead of jumping right into the MOST effective treatment first. Dumb, dumb, dumb....

Love and peace, Sandy

Last edited by SandyRI; 05-01-2010 at 04:01 PM. Reason: added content
SandyRI is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dreambeliever128 (05-02-2010), Kakimbo (05-10-2010)
 


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Ketamine, Pain free days and SSD Red Swan Reflex Sympathetic Dystrophy (RSD and CRPS) 4 03-23-2010 06:54 PM
some days chicken...some days feathers lostmary Reflex Sympathetic Dystrophy (RSD and CRPS) 14 06-17-2009 09:36 AM
Ketamine ali12 Reflex Sympathetic Dystrophy (RSD and CRPS) 3 10-25-2008 12:48 PM
Good days Bad Days ltassone Parents with Bipolar Children 13 09-06-2008 11:54 PM
Good days and Bad days, today was a good day! Pamster Bipolar Disorder 5 05-08-2008 12:24 PM


All times are GMT -5. The time now is 04:09 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.