Hi,

I never had Ketamine. but I was offered the treatment by an MD Maleki, he might not be to far from your neck of the woods.

When my pain was beyond bearable, I had IV Dilaudid, I am not sure if it comes in a tablets form.

Just hang in their.

Hugs, Roz

Yes dilaudid comes in pill forum as well in 2mg and 4mg tablets 4mg is the highest there is and i have had both the 2mg and 4mg tablets and exhausted this drug to its limits only to find it didn't work. I am doing research and going to plan my own course of treatment with the use of my doctors up here in order to attempt to hold me to the fall. I thank you for your post.

Hi I am sorry but can relate to this. I do have mental health issues in my past and now that I have rsd and pn I have had issues with doctors and care because of it. I feel very frustrated and alone. I am the first to say that I have past problems and now of course due to the pain I live in my depression and anxiety is bad but I am in op treatment for that with a psych and it is being managed to the best it can and I feel that it should not effect my physical care. You don't hear of people not being treated for cancer because they are depressed and this should be the same. I can only see this being a problem if one is in such a mental state they are not able to make a choice like this or to have some people in treatment for the mental aspects and then the pain doctor could do his part. Like a team approach. Don't give up. Hopefully through this bad experience good will come.

Hey Lordwood,

You are making a good decision to be an active participant in your care. Don't allow RSD to define you as a person. It takes a lot of patience to work with your meds and doctors to get the right cocktail that works for you. It's hard to stay postitive when you are in so much pain. Keeping stress and anxiety under control has been key for me I take .5 mg of Ativan twice a day and it works for me.
Hopefully you will find the relief that works for you soon!!
Take care,
Sbowling

Dear Lordwood, I am so sorry to hear your story. I can not imagine the dissappointment- just to think of the term of rejection is unimaginable. I just do not understand what happened.
When I first saw Dr. S he wrote on my report, appropriaely depressed given her pain.
So being rejected for depression is so very odd. Its horrible
the ketamine infusions are really only effective for alloydina. They virtually took mine away to a large degree.
Things have changed up there, did they test you psychologically?
When I went they did, xrays, themograph, vibration tests, heat and cold tolerance.
And some strength test- no psychological testing at all. I was certainly depressed and was on antidepressents.
I think someone really screwed you. I dont think anyone there has the right to tell you -that you are rejected because you are depressed.It makes no sense.
I would send a letter directly to Dr. S and tell him what you were told. That is just not right. If you read any of his publications he always mentions the severe depression that comes after acquiring RSD.
I am sure that someone really screwed up.
I would be devastated if that happened to me. I know that Dr. S feels the 10 day and 5 day infusions are not strong enough to help those of us that have full body RSD. That would be more likely the reason they didnt reccommend the program for you.Is alloydina a problem that you have? IF so thismakes no sense at all. I relly would write the doctor directly. After all the money you spent for the appt. and the diffuculty of travel for you you deserve some answers.
Again im so sorry to hear about this, hang in there, Sincerely CZ

I talked to Dr. S himself about this and yes there is a psych testing now. If you want to hear something even more messed up the psch doctor himself told me i passed and he went out and told my mother i had passed no problem. Than Weeks later when i was suppose to hear from them for the date of treatment i called and they said they still didnt have the psych results and than waited alittle and called again never got an answer back. Than one friday got called saying i would receive a call and letter in the mail. Waited over a week never got anything. Called back and called back didnt get answered and than days later got a call from a nurse who told me one of my tests didnt get passed she said it looked like the psych test and that i would have to call schwartzman about it and i did and waited for a call from him. Once he called he spoke exactly the same as the nurses. The fishy thing is the psych doctor said i passed. Plus why did it take so long for his test to get "finished" in all reasoning i know Dr. S is the one that pulled the string and didnt want to treat me cause iam full internal body and he wasnt confident in his program so he wanted something to hide behind. Hes a disgrace of a doctor and even though hes studied rsd for 30years he proved to me even after all that he still falls flat on his face as an rsd doctor.

I have had TOS for 10 years. I have had the rib resection and scalanectomy. I was actually pain free for about 5 years, actually had a baby in that time. Due to stress, pain came back and Dr. S diagnosed me with RSD. He said I need the 10 day infusions. I am scheduled for the beginning of September and am very afraid. I have been reading all I can on this and other sites and don't know what to do. I am 45, have 4 children and have not heard anything positive. I don't want to live on pain meds forever but am trying to research my options. Lordwood, I appreciate your insite. I would love to hear more of any information about his studies. I am in pain constantantly and it's hard to convey to others. No one seems to understand how everything can hurt all the time. Any information would be great. Thanks, Linda

Hey Linda,

I did the 10 day 4 hour infusions about a year ago. I wasn't one of the lucky people that got relief from my pain. On the third day I had a reaction the Ketamine was stopped for about 30 min. On the 4th day I completed the 4 hours and Dr. S decided to stop the treatment all together. It wasn't helping my pain level had not improved. They give you versed (spelling ?) to help with the side effects of the ketamine. I had my mp3 player on and the worst part was how real the dreams seemed. You may have experience that feeling from some of the meds you have tried.
It is hard for others to understand how bad our pain it. They love us and know we hurt but there is nothing they can do. There is good information on the RSDS.org website that may help them understand.
Take care
Sherrie

PM me anything u want to know. "I am in pain constantly and it's hard to convey to others. No one seems to understand how everything can hurt all the time." - i know exactly what this is like.

Since I have been on this board I have NEVER seen a complete recovery from any of you that have had Ketamine infusions and maybe the coma. The percentage of success sucks and there is no long term effect data on. Maybe it could be from myself watching someone come off ketamine or the stigma of being a street drug and animal tranqulizer.... I would have to be dying before I would try it. I will always put my 2 cents in went it comes up so if I offend anyone the I am sorry. I have seen it first had and it just scares me.

Cindi