Hi. I am new here. My name is Lily and I am 25 years old, and I have been diagnosed with CRPS in my right foot and lower leg, up to my knee, for close to three years. I had underlying bone issues in my feet, and directly after my last foot surgery, I developed cellulitis in my foot. My doctors have theorized that this is how my CRPS began. I haven't been able to walk since before that surgery, and I have not had a single pain-free moment since then either.

This afternoon, my pain management specialist - the third one I have seen in total - told me that I have exhausted my treatment options with them. (While the news was devastating, at least he was honest, unlike the last two who wanted to keep me on ineffective meds indefinitely and never see me again.)

I have tried all of the major neuropathy meds (Cymbalta, Lyrica, Neurontin, and Topomax). None of them have helped. I've tried topical meds - lidocaine creams and patches, compounded creams and so on. I've had lumbar sympathetic blocks - nothing. Spinal cord stimulator - the stimulation effect was there, but no pain relief at all. The most recent procedure was a Qutenza patch, which also provided no pain relief. The only things which even provide slight relief are high doses of narcotics (I've tried Oxycontin, oxycodone, methadone, Exalgo and Dilaudid, the last two of which I am currently taking). All they do is barely take the edge off and help me sleep.

After reading some of the posts here I know this is probably not news to many of you, but all I want in the world is to make my pain stop - or at least lessen to a bearable amount - and live something like the life I used to have before this all began. I feel like ketamine infusions are my last hope at this point. However, the doctor I was referred to by my podiatrist, Dr. Schwartzman at Hahnemann in Philadephia, won't see me until sometime in 2014. Yikes. I know I have it better than some, but... my CRPS has already spread from just my foot all the way to my knee (and I am starting to feel like it's moving beyond that now). I can only imagine how bad it's going to be by then if I do nothing but wait around.

So, my whole point is that I am searching for more doctors who perform ketamine infusions for those with CRPS, and someone who will possibly see me sooner than Schwartzman. The NJ/PA/NY areas would be best if possible, but I am willing to travel if necessary - I have wonderful parents who I know will help me in any way they possibly can (I have no idea where I would be today without them!). I would absolutely love to hear names and recommendations! Other than spending hours on Google I don't even know where else to start. If anyone has other ideas for treatment options I haven't tried, that would be totally welcome too.

Long story short, it's nice to find this place, and I look forward to meeting some of you and hearing your recommendations. :-)

Check out the Ketamine Klub on FB. there is a docs list there and lots of other ketamine related stuff. Good luck.

Hi Lily,
I am sorry to hear you have joined our "club." I am glad your parents are supporting you as most families and friends just do not get it. I would recommend you seeing Dr. Philip Getson in NJ. Just google him and call him up. He is not far from Philly. You may be able to do a lidocaine infusion first before trying ketamine. I've had both and the ketamine is something to be taken very seriously if you want to go that route. I have seen both doctors and I feel Dr. S is great but I lost alot of respect for him and his staff this last year. There is not alot of individual care there as was years ago. I would try Dr. Getson and you should be able to get in within say 4-6 months or so. Better than Dr. S wait.

My trauma started in my foot too six years ago so I know your pain. Stinks not being able to walk. Unfortunately, my rsd liked me soooo much it spread to full body within four months and I've been blessed to have it since then. Changed my entire world but I try to cope with it each day. I pray alot and have a good laugh a day. Funny thing is you said you got cellulitis after foot surgery. My brother in law just had a knee replacement a month ago and got cellulitis too really bad and had to go back in the hospital.

I have tried every med, pain med, etc. and I have found that less opiods (and pain meds) is the best route for me. I also found they only take your pain down a small amount and I have gotten off fentanyl for good after six years. It takes a huge toll on your body and I have so many dental problems and have spent so much money on fixing them. So less is best I say...at least for me.

Try to be devastated for a bit and then move on. Never give up hope you will get better. It is a long road but there have been some that get better than they were. It is a journey as I call it. This is the best place to meet others going through the same thing. There are a few youngins in here that may relate to you being so young. There should be laws against young people and children getting this mess. If you have any questions please feel free to ask away...someone is always up here to help. This is a great group of rsd friends. Do remember that with rsd what works for one person may not work for others. It is strange but we are all so different. Try to keep moving your foot. I know I went through heck with trying to walk on my foot after 1 1/2 of not being able to get it on the groud. Gentle chiropractics and I've been getting iv's of natural vitamins and minerals every month now. I started a year ago with every two weeks and I am up to once a month now. Hang in there and we are here for you anytime.
kathy d

Lily,
I am told there is also a dr. doing ketamine in Wilmington, Delaware. This was told by my atty. so I don't know any of his information.

Thank you so much for the information everyone! And thank you to Kathy for sharing your story with me too. :-)

I actually called Dr. Geston today. It does seem promising, and I am very close to his office which is great! The only other obstacle is getting my parents on board - since I've been either on disability or unemployed the whole time I've had CRPS, and I had just got out of graduate school very shortly before that, I cannot even begin to afford ketamine infusions on my own. They are of course somewhat reluctant to immediately shell out what Dr. Geston is asking, as he doesn't take insurance at all, but I am trying to get them to understand that hardly anyone who does these will cover it, at least from everything I've read so far.

I think once they come to understand that they will help me... but in the meantime I am in a lot of pain, of course. :-/ They are pretty understanding for the most part, and I am extremely grateful for everything they've done for me, but as I'm sure many of you will understand, when you're in constant pain it's hard to swallow that other people aren't as eager to get rid of the pain as you are! :-( I do think that they will come around to this though... I hope anyway.

Thanks again so much, and I look forward to spending more time here! :-)

You may want to try Dr Hertz at St. Lukes in NYC and Dr Richman at Hospital for Special Surgery. My insurance covered most of the bill at HSS. I also met Dr Getson. He is very nice but he may refer you to Dr Richman if you cant afford to pay out of pocket

Debbie

Try Dr. Hertz. He uses the same protocol, and was willing to accept my United HC. Getson is expensive. There is also another group called Fox Chase Pain Mgmt that has an office in Marlton, NJ that I've read about on FB. They charge less than Getson and will try to work with an insurance company on your behalf.

I started the 10 day protocol with Getson in April 2010, I think the world of him!! But there are other docs out there doing this stuff and once you start, you will need it forever. Perhaps you'll find a more budget friendly arrangement by shopping around. You are very fortunate in that there are a number of providers in that area to choose from.

The best of luck to you!! Sandy

Thank you so much again everyone. :-) After I joined the Ketamine Klub on Facebook and saw all of the doctors that are relatively nearby, I think I am just going to make lots of phone calls and see if any of them will possibly take my insurance before I settle on anyone. Thank you for the recommendations for Drs. Hertz and Richmond too - they will definitely be on my call list!

Please join the Ketamine Klub on FB...there are people there with dozens of ketamine infusions behind them (my 20 yr old daughter included). It really is life changing.

Thank you betsykk! I actually did join the Ketamine Klub recently, and the people there seem really nice! I am very glad to hear that it has worked for your daughter too. :-)

I have to report as well that my mom and I have been doing research, and I now have an appointment next week with a doctor in Temple Hospital's (in Philadelphia) neurology department. I spoke to one of the nurses there, and she told me that if the doctor who will see me thinks I qualify, they will refer me to Fox Chase's ketamine infusion program! And since my father works for Temple, everything should be covered under the insurance I have through my parents, thankfully!

I am so excited and hopeful about this... I really, really hope it works out with them. :-)