Good News!
 

So I've been waiting to hear from my specialist who has been trying to get in touch with the doctors ahospital in Utah about doing the Ketamine infusion. Well no one ever called back or contacted her so she's not going to keep me waiting any longer.
She was actually able to get my insurance to immediately approve a Lidocane Infusion here in my own city!! We went with the Lidocane instead since I do have a history of postpartum depression, and Ketamine can have adverse effects with depression. I'm a bit nervous....I've had a lot of adverse reactions ...bad luck....or they don't work at all. I'm going to go into this as positive as I can, and hope for the best. But I also do not want to put all my hopes in one procedure, as we all know that's never wise to do.
I just wanted to let you all know. I think it will either be the week of Nov 3rd or 17th. I have to speak to my doctor about it on Monday. And talk it over with my family this weekend.
I was wondering if anyone could tell me about their experience with with Lidocane /Ketamine Infusion?

Hey Songbird,

Congrats!!

About the lidocaine infusions - this type of therapy is best for cold allodynia so if that is a major symptom for you then this can be quite effective. An easier way to determine if you will benefit by it is a drug called Mexiletine which does the same thing as getting a lidocaine infusion in a pill form. This did not help with any of the other symptoms of CRPS like the burning, electrical shocks, knife like pain etc.,

I do hope you are able to get whichever treatment will help you the most and quickly.

Best of luck to you...I really hope that this helps you find some relief!! Hugs!

I am praying for you that this is your answer.. :hug:

Congrats Bird...hope you can finally get some relief!!!

Good luck to you!!

I get lidocaine infusions once a month. For me it helps with the allodynia, burning, and overall pain. It allows the medications that I'm on to work better and I've been able to cut down recently.

At the pain clinic that I have my treatments they take me into the treatment area, start an IV and monitor my blood pressure every 5 minutes. The lidocaine infusion takes 30 minutes and they monitor me for another 30 minutes afterwards. I feel a little "drunk" and sleepy during the proceedure- nothing bad. My speech gets slurred as the proceedure goes along which is funny. They can slow the infusion down if the side effects are bothering you, but the faster it goes in the better it works (at least that's what my doc told me). He said they try to only slow it down if it is causing issues with your vital signs. I don't find the side effects bothersome at all. They wear off pretty quickly once the infusion is done.

The pain clinic that I go to (attached to a large teaching hospital) is the only one that does lidocaine in this area. The other two pain docs that I have seen said it's "old fashioned." It has helped me, so I still do it- old fashioned or not. The combination of Calamar and lidocaine has really made a difference in my quality of life.

As far as not getting ketamine because a history of depression, they use ketamine infusions as a treatment for depression. There's a large study going on now comparing inpatient vs. outpatient ketamine treatment for depression.

Congrats Bird...
It's always good to hear some good news...

So did you get it? How did it go?

Yes I had the Lidocaine Infusion
 

Unfortunately, it isn't yet working as well as we had hoped yet. I still have about 1 week to see if it gets any more effective. The great thing about it was my Doctor was able to not only get my insurance to immediately approve the procedure, but she was approved to do the procedure herself right here in my hometown! It was 100% covered by my insurance company but I really couldn't afford the transportation costs and wouldn't have had any family to visit and give emotional support by visiting because no one else in my family could afford the transportation/lodging costs either. Needless to say having my doctor set up everything so it would be faster and cheaper was a genuine blessing. Then again my Doctor is an even bigger blessing.
I will say the treatment did help with my legs and feet fairly well as long as I don't walk very much or stand for too long. Also instead of continuing to spread further up my legs it's more contained to below my knees, and mainly worse my lower calfs and down. It's helped with the shiny skin, temperature fluctuations, and mostly the hypersensitivity. However, if I even slightly overuse my limbs in any way it still flares back up pretty fast and hard. My left arm/hand is still the worst. It's my originating site so maybe that has something to do with it. But if I stay mellow and still refrain from cleaning, cooking, any physical activities, and not strain myself in any way my daily pain levels are down for an average of 5-7 from a 7-8. I'm no longer taking Methadone, so that's good. We replaced my Methadone with a higher dose of oxycodone and instead of 3xs a day to every 6 hours. It's to help keep me from going into withdrawals since we took me off methadone within 10 days, and the withdrawal caused my symptoms to go haywire. But, even when we tried to slightly lessen the oxycodone it wasn't controlling my daily pain levels enough. So we're going to see if 1) in the next week or so my pain or symptoms get any better 2) how long what it has helped (even if it doesn't get any better) lasts. If it doesn't last long we're planning on trying it again but with Ketamine instead of Lidocaine. But my Doctor has to get through a bunch of red tape with Rockwood and the Hospital to get it up and running. Lol. She's done both lidocaine and Ketamine infusions at least 300 times each during her Residency under Dr. Schwartzman. Lol but we know that every office, clinic, hospital, not to forget about the insurance companies, have protocols and before, during, aftercare plans, and making sure that the nurse's are trained in what to expect. So if that's the route we have to take it will take a few months before I could have it done.
Sorry I didn't update everyone, but I've been taking it easy and didn't want to dwell on the fact it wasn't working right away as I'd hoped for and just hope I was one of the people that didn't see the full effect for up to 2 weeks.
I'm happy it's seemed to halt the spreading, and grateful for the added relief while at rest. Plus I didn't suffer ANY of the sidetails effects that most people have. Since I'm allergic or have severe adverse reactions, basically super sensitive to almost every single non-narcotic medications for Crps, it's nice to know there's another one I can tolerate!! Lol!
I'm still keeping my spirits high and living my life as much and happily as I can! Money has been a huge stress for me lately, and I have no idea how I'm going to provide my daughter with a Happy Christmas like I usually do. She turned 9 yrs old in October and she still wholeheartedly, beautifully, and adamantly believes in Santa! How rare is THAT in this day and age!? Once, when she was about 6-7, she said to a boy in her class who said that Santa didn't exist, "Well I DO believe in Santa! And I believe in Christmas Magic! It lives in your Heart!" She has such a pure little heart! She told a boy at school today that "Santa is real, you don't have to believe., but I Do!" I love the way she stands up for her beliefs! I'm not going to lIke the day when I have to tell her he isn't real!! Maybe I'll explain he really was a person, St. Nick Klaus, and that the Christmas Spirit and Magic is real. As long as we make the magic from the love in our hearts for the people who are most important to us and more importantly...to always help those less fortunate than we are. That's the real magic in Christmas...something like that lol. Sounds like a lifetime Christmas movie excerpt!
Anyways I know this is a long post, but I thought I'd give you all an update since I hadn't let everyone know how my procedure went and how I was holding up.
I hope all of you feel the Joy, Love, and yes the Magic of the Holidays, whichever one you celebrate! I pray that you all have as much pain relief and peace as you can! My love, thoughts, and prayers are with you all!!

~♡~Songbird~♡~

For those of you who are Christian! May God grant you as many Blessings and Prayers during this Blessed Holiday Season!

(No offense meant to anyone who is not Christian!
So truly wish you all a Happy Kwanzaa, Happy Hanukkah, and Happly Eid ul Adha!!)