Quote:
Originally Posted by Swatgen27
Hello Everyone,
The last few months I have been having a really hard time with my CRPS battle. I was house bound, and pain levels were the highest they have ever been since the CRPS started 4 plus years ago. I couldn't sleep, eat (lost 15 lb's and didn't have extra weight to loose), I couldn't even think straight, my b.p. & heart rate was extremely high, and the swelling and coldness in my legs also got worse.
None of my Dr's here in Illinois had a clue how to treat my case so I pulled myself together enough to realize that I needed to fight for my life. Roughly 2 years ago I tried ketamine infusions at Rush, and they administered it once weekly for 3 treatments. I had great results with the outpatient treatments but the head Dr recommended that I do the 5 day inpatient infusion with a cathadar placed simotanuosly to administer a continuous nerve block. This Dr was well aware that I will nolonger participate in any treatment that involves the spine so I voiced my concerns and the head Dr at Rush lost it and had the absolutely worse attitude of any person I have ever met so I decided he wasn't the Dr for me and left Rush all together.
So long story short and 2 years later my CRPS was out of control. I started researching ketamine infusion treatments and found Dr Leverone that works out of LA California. Dr Leverone is the best Dr I have ever met. He was able to treat me within 3 weeks of when I contacted him for the first time. I had to have clearance for the treatment (labwork and a physical). Dr Leverone's treatment protocol is somewhat different but I have to say it has been a miracle for me. Dr Leverone infuses the ketamine at 1000 mg over the course of 4-5 hrs. At Rush I was infused with 400mg over 4 hrs. According to Leverone the increase in ketamine allows for less boosters as his patients usually have the 3-5 day treatment and then no boosters for 3-6 months. I have been pain free since day 2 of the treatment and I finished the treatment last Friday. Also, after completion of the infusions, Dr Leverone's protocol includes taking oral ketamine for 14 days.
I'm so thankful to have found Dr Leverone and I would recommend him to anyone fighting CRPS. I hope everyone is having a good day and I pray that everyone gets great relief from their symptoms of this disease.
Sarah
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Hi Sarah
What a great story, I am so happy for you. I think of you often as you have helped me with my daughter Maddy and her CRPS battle. Your support and advice has kept me strong and keeps me with hope that my daughter will get better. I am so glad that you found a Doctor who you trusted and helped you with this horrible, horrible condition.
Maddy has had CRPS for almost two years. She tried Ketamine in Feb., it was a 3 day, 3 hours 400 mg treatment at Rush with the same doc you had. She had some good results (pain in her left arm was gone, but her left leg did not chance) On June 6th, 3 days after she walked with her class for her High School Graduation it mirrored to her right leg. She has been in a wheelchair ever since. This has truly been the biggest setback we have faced and it has been devastating on my beautiful daughter. On July 12th we go back to Rush and do a 3 days of 6 hour high dose Ketamine, 600, 1000, 1500 depending on how she handles it.
You will be in my prayers that you stay pain free, it is such wonderful news and I am crying with happiness for you as I write this. I have followed your story and it has not been easy for you. To have finally found something that works is such a blessing. Your story continues to bring me hope that Maddy too will be pain free soon.
Take care of youself.