[Heather Rae]

Hi everyone. My name is Heather. I have battled RSD in my left leg for 5 yrs following a severe patellar fracture which is now complicated by knee arthritis and scar tissue as well...meaning this gives me multiple types of pain. Complicated to treat to say the least and it is VERY stubborn pain...grrr! SEVERE pain spikes happen if I am not overtly careful with how much I try to do too. I have had the SCS for 16 mos and have had to take pain meds daily for 5 yrs but, the pain never goes away. The RSD symptoms (coldness which used to be super hot, redness which used to be purple, swelling etc) flares up quickly too. I'm still doing PT on my own now but was a reg PT patient for 4 yrs. Has anyone else had extreme muscle loss and not been able to regain it or plateaued because pain was shutting down muscles even though you are still doing the exercises and bearing wt? The bone loss which started in the leg has now progressed to other areas such as wrist, both hips, spine etc that the doc discovered on bone density test. So, I am on Fosamax as of 3 mos ago too. This disease really sucks! So, in order to improve pain levels and hopefully get RSD under better control so that the ortho can proceed with a total knee replacement, I have started Ketamine infusions. Had the first one on Fri. It was a very strange, scary experience but, I was pain free for the first time (except when under spinal anesthesia for surg) in 5 YEARS!!! Testing it, bending the knee, trying to make it hurt and it didn't! I was awe struck! On sat, the pain returned full force though and I was hoping for better relief. I am supposed to have a 2nd infusion but my pain doctor only does 2 infusions...then you might get a booster a few months later. I have read of greater success with 5 or 7 day infusion therapies in which RSD pain is markedly decreased if not remission! I am hopeful this 2nd one works longer! If anyone knows more about them or would like to share their story, I'd love to hear about it too!

[SandyRI]

Originally Posted by Heather Rae

Hi everyone. My name is Heather. I have battled RSD in my left leg for 5 yrs following a severe patellar fracture which is now complicated by knee arthritis and scar tissue as well...meaning this gives me multiple types of pain. Complicated to treat to say the least and it is VERY stubborn pain...grrr! SEVERE pain spikes happen if I am not overtly careful with how much I try to do too. I have had the SCS for 16 mos and have had to take pain meds daily for 5 yrs but, the pain never goes away. The RSD symptoms (coldness which used to be super hot, redness which used to be purple, swelling etc) flares up quickly too. I'm still doing PT on my own now but was a reg PT patient for 4 yrs. Has anyone else had extreme muscle loss and not been able to regain it or plateaued because pain was shutting down muscles even though you are still doing the exercises and bearing wt? The bone loss which started in the leg has now progressed to other areas such as wrist, both hips, spine etc that the doc discovered on bone density test. So, I am on Fosamax as of 3 mos ago too. This disease really sucks! So, in order to improve pain levels and hopefully get RSD under better control so that the ortho can proceed with a total knee replacement, I have started Ketamine infusions. Had the first one on Fri. It was a very strange, scary experience but, I was pain free for the first time (except when under spinal anesthesia for surg) in 5 YEARS!!! Testing it, bending the knee, trying to make it hurt and it didn't! I was awe struck! On sat, the pain returned full force though and I was hoping for better relief. I am supposed to have a 2nd infusion but my pain doctor only does 2 infusions...then you might get a booster a few months later. I have read of greater success with 5 or 7 day infusion therapies in which RSD pain is markedly decreased if not remission! I am hopeful this 2nd one works longer! If anyone knows more about them or would like to share their story, I'd love to hear about it too!

Check out the Ketamine Klub on FB. Lots of good info.

Everyone is different with how they react to ketamine. It is awesome that you were painfree from the infusion, however, there are so many variables such as dosage, length of time of your infusion, whether you are taking opiods at the time of your infusion (which may block the receptors that the ketamine adheres to), etc. that the length of time you were painfree could have been impacted from any of those factors.

I started with the 10 day protocol at Dr. Getson's in NJ. I did 10 days in a row, then 2 days a week for a month, then 2 days every other week for a month. I now go generally about 2 days every 4 weeks. Ketamine has been very successful for me.

Good luck to you. xoxo Sandy

[Heather Rae]

Originally Posted by SandyRI

Check out the Ketamine Klub on FB. Lots of good info.

Everyone is different with how they react to ketamine. It is awesome that you were painfree from the infusion, however, there are so many variables such as dosage, length of time of your infusion, whether you are taking opiods at the time of your infusion (which may block the receptors that the ketamine adheres to), etc. that the length of time you were painfree could have been impacted from any of those factors.

I started with the 10 day protocol at Dr. Getson's in NJ. I did 10 days in a row, then 2 days a week for a month, then 2 days every other week for a month. I now go generally about 2 days every 4 weeks. Ketamine has been very successful for me.

Good luck to you. xoxo Sandy

Thanks so much for you response back Sandy! Unfortunately I have not been able to tolerate using my leg at all without the use of medications since I crushed my knee in 07 and they've always only just took the edge off the pain...even back then. I was hoping that the SCS would allow me to fully wean from opana and norco but cutting them back has only been possible. The pain has never been gone even for a minute except the day I tried the Ketamine though! AMAZING! That makes alot sense as what you're saying about competing for receptors...I get it. So, maybe I will ask my pain doc if I should skip the pain meds before my next infusion. I was instructed to take all meds the last time. I also wonder if the SCS should be turned off too? Would that impact results as well or no? If I get the same results with the next infusion or I get good pain relief but it doesn't last long, I have another option with a RSD specialist to do a 5 day infusion but he is over 3 hrs from home and must make arrangements to stay there for 5 days. Today, I did read that with RSD, when you get a positive result with this med, the more the better it seems to get the longer lasting *remission* or pain relief states. The goal is to trick your brain into thinking the pain is gone. Might be awhile before I can do the 5 day back to back infusion but I would definitely consider it! It is truly amazing what it is doing for you too!! I am so very glad I made that appt and took that 2nd opinion with the RSD specialist...he is the one who suggested trying this too! Hopefully the next time the nausea won't be as bad either..I apparently needed some Zofran according to the nurse. Does that get better over time as well? Thanks again Sandy!! I'm happy it's helping you so much too!!! xoxo

[betsykk]

I too suggest joining the Ketamine Klub on FB. There you will find many many people who have undergone ketamine treatments both inpatient and out. Also there are documents and articles in their file section to help you understand how it works, insurance codes, studies and more. It appears to be the most comprehensive site I have seen for those investigating Ketamine and RSD.

[Heather Rae]

Originally Posted by betsykk

I too suggest joining the Ketamine Klub on FB. There you will find many many people who have undergone ketamine treatments both inpatient and out. Also there are documents and articles in their file section to help you understand how it works, insurance codes, studies and more. It appears to be the most comprehensive site I have seen for those investigating Ketamine and RSD.

Thank you very much too Betsy! I am checking into FB as well...am a member there too! I had such a glimmer of hope with the way the last infusion went and was utterly dismayed the next day when the pain came back. If there is a way to beat this disease into remission with ketamine as there appears to be, I would like to know the right way to go about it too. Thanks so much!

[betsykk]

My daughter is having a tremendous amount of lucky with Dr Nancy Sajben painsandiego.com
Her combination of meds has brought my dd's pain down by 70%.
For a list of the meds used see her 'long distance patients' tab. for a look at my daughter's case, see the May 12 archive.

I can't recommend her enough. a BRILLIANT doctor who deals with chronic pain patients and serious depression. She really listens and really cares.

[sbroty]

Originally Posted by Heather Rae

Hi everyone. My name is Heather. I have battled RSD in my left leg for 5 yrs following a severe patellar fracture which is now complicated by knee arthritis and scar tissue as well...meaning this gives me multiple types of pain. Complicated to treat to say the least and it is VERY stubborn pain...grrr! SEVERE pain spikes happen if I am not overtly careful with how much I try to do too. I have had the SCS for 16 mos and have had to take pain meds daily for 5 yrs but, the pain never goes away. The RSD symptoms (coldness which used to be super hot, redness which used to be purple, swelling etc) flares up quickly too. I'm still doing PT on my own now but was a reg PT patient for 4 yrs. Has anyone else had extreme muscle loss and not been able to regain it or plateaued because pain was shutting down muscles even though you are still doing the exercises and bearing wt? The bone loss which started in the leg has now progressed to other areas such as wrist, both hips, spine etc that the doc discovered on bone density test. So, I am on Fosamax as of 3 mos ago too. This disease really sucks! So, in order to improve pain levels and hopefully get RSD under better control so that the ortho can proceed with a total knee replacement, I have started Ketamine infusions. Had the first one on Fri. It was a very strange, scary experience but, I was pain free for the first time (except when under spinal anesthesia for surg) in 5 YEARS!!! Testing it, bending the knee, trying to make it hurt and it didn't! I was awe struck! On sat, the pain returned full force though and I was hoping for better relief. I am supposed to have a 2nd infusion but my pain doctor only does 2 infusions...then you might get a booster a few months later. I have read of greater success with 5 or 7 day infusion therapies in which RSD pain is markedly decreased if not remission! I am hopeful this 2nd one works longer! If anyone knows more about them or would like to share their story, I'd love to hear about it too!

Hello,
I live near Kalamazoo, Michigan. Can you please tell me the name of the doctor who is working with you for the Ketamine infusions? I can't find anyone!
Than you so much.