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

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.

Thank you for sharing and I am so happy for you that you are getting relief.

Thanks for the update, so glad you have found relief. Please keep us updated as the months go on. I have been researching the ketamine for my husband, but I was afraid that since he had for almost 4 years now the ketamine would not work. I am starting to have hope after reading your story. Right now he has had relief from fentanyl patches, it is the first time he was able to stand on his right leg in a year. Enjoy your painfree days!

Thank you everyone for your kind words and great feedback. So far everything is still going great. The only major side effect that is bothersome is exteme fatigue but I'm hoping that will end in the near future.
Rachel's Daughter: Im so happy to hear that Maddy's next infusion is at a higher dose. I think it will make a huge difference and offer her some decent pain relief. Maddy's story really touches my heart and please know you and your family are in my prayers and thoughts on a daily basis. Please keep me posted as to how Maddy is doing.
RSDwife: I know how draining this disease can be on a family unit as I too am married. Good pain relief is a necessity when it comes to this disease. I too have been on the patch for the last 2 years. It worked really well during the first year and a half and it really assisted in allowing me to remain mobile. I was able to go skiing, hiking, wakeboarding... Because the patch worked so well in covering up the crps pain. However, I must add that it only provided short-term relief and I started at 25 mcg's and over the last 2 years it was slowly increased to 50mcg's and it lost it's effectiveness which I think was due to plan old tolerance. I think it's important that your husband has good pain relief as no human should have to endure such severe pain over such a long period of time. With that being said I would definitly still research other treatments and know that I recommend this only because I have found that pain medicine becomes less effective over time if not prescribed correctly for long-term use. I suppose if my regime was changed on a regular basis such as rotating between opiate family's I may not have built up such a large tolerance. Currently I'm working on weening off the patch and it has not been easy. The patch gave me life and was the only thing that provided really great pain relief so I don't regret starting it even with it being so hard to get off of. I really mean it when I say the physical withdrawals are horrible.
Any tips by others on how they got off of the patch would be greatly appreciated. Thank you again for the support and I pray that all who are effected by CRPS find the relief they have been searching for.
Sarah

Sarah, there is a med called Suboxone that I used to counteract withdrawal from Fentanyl, but you can't be on any opiod meds at all when you take it or you will get sick. It does help. only a doc that holds a special license write a script for it. I only took it for 3 weeks or so, I should have taken it for much longer...I was a pretty much a mess...I can so relate to how you feel.

good luck. Sandy

I'm happy to say that I'm still feeling better. I have been able to reduce some of my pain medications as I'm no longer taking 60mg of oxycodone ir per day. My crps pain is still under control and that is a miracle in itself. I have experienced some intermitant pain in my hip (where it started 4.5 yrs ago) but it is not constant and at most what I consider a "2" on the pain scale. I have been focusing on excersice and stretching in hopes to keep the crps in check. I have always been an active person and the last 4 months prior to the ketamine I was bedridden so the excersice really is a good therapy for me both physically and emotionally. I have been walking 3 + miles a day and riding my bicycle daily. I'm really digging my nice tan from being in the sun. I only have one more pain medicine to reduce and that is the patch and I'm currently weaning off of that medicine as well. I just wanted to keep everyone updated on my progress with the high dose ketamine infusion treatment. So far it seems like a miracle. I hope everyone else is doing well, and if not please keep faith and hope that things will change for the better.
Sarah

During the treatement did you experience any side effects? I am very interested in doing the treatement, although I know some doc's out there are great and some are down right scary. Also, what does your doctor project as far as needing booster injections? I would reall like to talk with you more about your experience with Ketamine.
Thank you,
Eli

Eli,
First off I feel I must apoligize for my late response as I have been vacationing in Wisconsin with my family and checked out from the vitural world & real world for some good old fashion fun outdoors.
I agree that you must do your research in finding a good dr before agreeing to do the ketamine. As far as the treatment I did with Dr Leverone, I did the 5 day out-patient infusion and the main side effects I had was fatigue and weakness. After each infusion my body was completely numb for a couple hours so it's important that you have a good care taker that can stay with you for the entire length of the infusions & afterwards for the entire day & night. I did not find the numbness bothersome as I had been in so much pain prior to the treatment that I was just thrilled not to be hurting so badly (the pain was so severe that I was wishing for death). As far as boosters it is not uncommon for his patients to not need it until the 4-6 month mark & it's usually just a 1 day booster followed by 2 weeks on oral ketamine. I have heard some of his patients make it an entire year before needing a booster. So far I'm almost at the month mark and Im still doing great. I have had CRPS for over 4 years and I have honestly not felt this good with any other treatment and I have tried everything except the SCS & pain pump. Please let me know if you have any other questions and I pray you find the relief you are searching for.
Sarah

I just was told by my docs that doing the 5 day outpatient treatment would be the best option for me. Thank you for the information you provided. I hope to be in the place you are soon.