Thinking Of Ketamine? Better not be depressed or you'll be rejected!
 

After weeks of incompetency of the infusion suite for Dr. Schwartzman's ketamine program they returned saying i didn't pass my one clearance test. Turns out if your depressed your rejected from the program. :icon_mad: how is any RSD patient not depressed? Only those less than 2 years into it can be the ones not depressed at all. I'm irate and not alone my doctors are as well and my past therapists are going to be brought back into this equation. I've been on over 7 antidepressants and gone through therapists all to the conclusion that my RSD needs to be taken out of the equation before my depression can go away. What i find funny is the doctor which conducted the test to which i didn't pass, told me at the end of it that there was no problem and that without question i had passed. I've meet kids in Dr. Sherry's program that had went to schwartzman first and it failed for them, they than went through sherry's program and were cured. Should i really be surprised schwartzman should chicken out in the end. Every pain clinic i go to look at my file and go your to advanced. Its no wonder schwartzman would do the same. I passed all my clearances schwartzman is pulling this ******** cause hes unconfident in his own program i saw it the first time i had an appointment with him. All he did was keep instilling he was working with the FDA on other treatments that he could try. For a specialist that's been quote on quote studying RSD for 30 years i find it hard for schwartzman not to have seen all RSD patients depressed. The good news is i have had another RSD specialist on the back burner ready in case schwartzman pulled something which i am glad i had. Dr. Ronald Harbutt he does a similar ketamine treatment. His program is not up until this fall but at least there is another. I am severely disappointed in Dr. Schwartzman, he definitely was not worth the wait nor would he have been work a weeks wait. From what i've seen and from what i have learned from other patients it seems unless your rsd is in one or a few spots than schwartzman's program will work and even than it fails quite often. Good luck to the rest of you.

Sorry to hear about your rejection, LordWood. I can attest being the husband of a person who has full body RSD, she is depressed and not very happy at all. She also received ketamine infusions at GW hospital in Washington.

Hi Lordwood,
 

I am glad you have a back up plan. I am sorry that you have to go through this.

When I first got RSD my depression was so bad that I ran up on a lot of Drs. that wouldn't deal with me due to my depression. I have been in councelling for years and and I still deal with it at times but I can say, the Drs. treat me different now. They do listen to me and I know before it was due to depression that they weren't listening. I would come back from the Drs. office and cry and cry over the way they treated me.

I know someone here who went to Swartzman and all he came back with was a copy of his tomograpy. It showed the red areas where his RSD was. He said he was going to have it put on a Tshirt. At least he'd have something to show for the trip. He spent a week there in a motel and saw Dr. Swartzmen for all of half an hour. He was prepared to stay longer but found there was no purpose.

I am glad to see you post though. My thoughts are with you and hopefully soon you will get some help to relieve the pain you are going through.

Ada

Dr Schwartzman has alot of experience with rsd.
He knows for instance that the longer the individual has it, and the more it has spread, leads to a much lower positive outcome for the ketamine. I suppose he has learned now too, that depression doesn't help. I am very sorry for you, that your expectations with him weren't met.
Dr S, wants the ketamine treatment to get to the people it will help. Especially before it gets classified as something just doesn't work. I've had it. It didn't help me for any long term.
What we've got here is a disease with no "Magic Bullet". We each must work with our system of management.
The triangle.
The meds. Your doctor.
The mind and depression. Your psych pain management dr.
The body. Excercise and keep it moving. Use it, or lose it!

And, most of the most organized of us, fall off the horse occasionally.
We cry, dust ourselves off, and get back on.

I wish you the best.

Pete
ASB

Ketamine infusions didn't help my wife because she had it for 6 years at time of the infusion. One thing she learned years ago is what you stated, keep moving around, do not lay about or you'll be sorry.

Schwartzman wants his program only for those to which he knows the ketamine will cure so his success rate goes up problem is if your going to have an RSD treatment you can't play god and pick and choose just as you like to increase your success rate to make you look good. No meds work whatsoever thats been found for years now. Been through psych management docs and over 7 depression drugs all to the conclusion that until the rsd is gone nothings going to change. Exercise i keep on the move and have went through many physical therapy programs as well. I've dusted myself off many more times than reasonable. Getting up and dusting yourself off does not mean if u do it 70 times ur going to get better and never have to do it again. Other than being strong and picking yourself up its means nothing.

As well i wish you the best.

I'm sorry that things didn't work out as you had hoped. You are right, with rsd comes depression, the two go hand in hand. To get the scs I needed a psych exam. Yes, I was depressed, but like you, I had the ability to pick myself up and start over. Of course, I got the scs. In fact, I got two. didn't work out as well as I had hoped, and the 2nd one left me with MRSA and about 24 hrs short of dying before it was discovered. I now have a pm that is willing to work with me with drugs, and I have found Opana Er to be great. It really seems to work with the pain of rsd. It's a new drug only out 2 yrs so it is still new. I have rsd from my back all the way down to the tip of my toes. so for me this drug really seems to be a way for me to go on. What is on the horizon nobody knows, but you can bet I'm going to be there waiting. Hang in there.(I know, easier said then done)

Hugs
Mary
\

Depressed is a side effect
 

Hey Lordwood,

I'm sorry you had to go through such a disappointment with Dr. S.
Depression is a side effect of RSD. It sounds like your working to get that under control.
Dr. S treatments didn't work me and his last option was a ketamine coma in Germany. I'm not ready to be a statistic in that part of his research.
His knowledge is vast and even through his treatment didn't work for me he is a great source of knowledge. I have trouble with my heart and lungs the RSD is interferring with their function. My doctors here in Ohio have called him for advice on how to help. He has been very helpful getting them to understand what is going on and how to treat me.
I know you are disappointed we have all been there. We think we might be on the track to finding relief only to be disappointed. Go ahead and feel angry and let down. However don't stay there you have to dust yourself off and move on, because, there is a treatment out there that will work for you.
Take care:hug:
Sherrie

Lordwood

i am so sorry that you are goin thro this right now i know how much you were looking forward to this. keep your head up buddy maybe it just wasnt meant to be pm me and we can talk

carrie

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

Oh, Lordwood.......I wish so much I had read this post yesterday. I am so sorry, honey. I know that does not help. You know that I have been suffering from major depression, too (and I've only had this for 4 months now......I can't imagine how you feel). The RSD messes with our brains. You are right, how can you NOT be depressed with all you're dealing with.

Frankly, I am inclined to agree that he may be limiting his patients to those that have the most promising outcome (it DOES lend more credibility to HIM in that case). It is unfortunate......BUT......I have done a lot of research on Ketamine and it is NOT something you want to be messing with if your brain is already out of whack (even just temporarily). It is really a dangerous and powerful drug. I know of someone who just died after the coma in Mexico about 6 weeks ago.

Go with Plan B. You're smart to have one. Find another place to volunteer, or start writing or blogging. You write SO well, and your story could help someone else. Please PM me when you get the chance.
Much love,
Mom

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

LordWood,
What Sbowling says is spot on.
I have a question for you.
You tell us things that haven't worked, but, (Maybe I didn't read elsewhere), I don't know how long you've had rsd, if you have tos too, or anything in addition, and, what meds you are taking now, what is your current cocktail?

For instance,
I've had rsd for 25+ years. It spread to what we'd call full body long ago, I also have TOS, and Then got a TBI , and discs, and other things.
My "Cocktail" is
Methadone for pain 50-60mg / day.
Cymbalta pain/antidepressant. 60mg/
Diazepam, muscle relaxant/ de stressor
Zanaflex / muscle relaxant
Namenda, Topomax, Zonegran. nerve pain and anti convulsants
Imetrex (migraine).
From there, meds cross over to the brain injury.

Lots of these are scheduled especially the first few, then some are prn.
as needed.

Maybe, we could help with what you're taking, although I don't think we're doctors, but more than that..
You seem to be looking for an absolute cure.
I don't know that RSD has one.
It's a disease that gets "managed". And, that's all.
Sometimes we do well, sometimes not.
Sometimes the pain is under control, sometimes, it breaks through.

Keep on Keepin On!

Pete
ASB

First of all thank you for your post. While were not doctors in the field of treating ourselves we are truly the only ones which know whats a right path and whats a started out fail. Doctors cannot grasp where were at and there for cannot administer correct treatments its up to us to gain control and word on our own cocktail. Mine has been a mix for awhile but now its down to barely nothing because we had thought i was going for the ketamine, anyway what i am on now:

Oxycontin 80mg 2x Daily
Neurontin 600mg 3x Daily (This medicine is a waste and i still don't know why they keep me on it i was on 300mg 3capsules 3 times a day and now they lowered to this makes no sense to be on.)
Alprazolam(Xanax) .50mg 1 3times Daily

I've been on every med you listed except for Zanaflex which i had skelaxin,
Namenda, Zonegran which i to took Valproic acid, Imetrex.

Iam also on med for my crohns.

I'd like just for it to be under control. But i have seen patients that have been cured. You wouldn't believe how many come out of sherrys program cured and never have to come back.

My thinking is Uping the Oxy to 160mg 2 Daily. Getting rid of the neurontin. replacing it with My Old Dialudid 4mg tablets 1 tablet 3 times a day. Also adding back a stronger dose of methadone. Than increasing my Alprazolam(xanax) to 1mg tablets. I think this is a nice start to finding my way around towards the perfect cocktail.

Lordwood,

Just a thought, have you discussed trying IV Lidocaine infusions with your doctors? It was recommended to me as an alternative to Ketamine. I have had very good results from it as have many other patients here in my city.

It is not a cure but has given me much of my life back. I consider it my part of my rsd maintenance program.

MsL

I'm so very glad to see that you're working this through in your mind. I don't know where you're from, I'm near Philly, and can get to good doctors, rather quickly.
I think you've lost faith in your doctors, which has happened to me before, and lots of us.
You know what you need to do. Which is a great step.
Yes, you're correct, we are the "Test dummies".
WE have to tell the Doctors what's up.
What is quality of life with all this suffering?
The methadone works well for me, with it's adjuncts, and miralax for constipation. (I used to be @ 15mg/ day, after the second accident, went to 100mg/day. Now I'm settled at 50-60mg/day. with the other things).

So, Keep on Keepin' On!
Find a doctor, and, I think that you really got "kicked down" with dr S.
I'm sorry for that.
Don't let it stop your determination to find a better life.
I live in depression, and find Cymbalta good for pain relief too.
(After ALL the other ones, but still, you hafto find what works for you).
I hope you have or find a good pain management psych.
A good neuro,
and keep it moving!

The triangle of RSD care. that I've stated before.

I wish the best for you, and will keep you in my prayers!

Pete
ASB

Just a thought
 

Lordwood,
So sorry to hear about what you are going through-I can feel the frustration in your "voice" and I share it in many ways. Months ago I was begging to find some way to get Ketamine for myself and in a desperate state of mind. Please look at what Ketamine actually IS and what it is used for. This is a drug that poses significant system depression while you take it. Despite feeling angry myself that I wasn't able to get it, there is a factor in it's worsening depression AND inhibition, which can be a dangerous combo. Consider that Dr. S is making this rule for the safety of the patient and not to cook his books. Ketamine is still very contorversial and no one will ever get it if he cannot report adverse effects or gets slammed with a "this drug makes depressed people suicidal" black box. Ketamine is still considered experimental and Dr. S walks a fine line in that way without FDA blessing. Believe me, if you read my old posts, I am far from an advocate of the medical community (despite being a nurse for 16 years), but I have given Ketamine before for sedation and it is not Tylenol.
Lori Lee

By your reasoning All RSD patients should not be allowed Ketamine as there is no true RSD patient that is not depressed. I know what ketamine is and its abilities. As well i know ketamine is not like tylenol as tylenol is not a medication at all in anyform no matter what dose. For any rsd patient wanting treatment with ketamine i would strongly recommend Dr. Harbutt for ketamine as his program is far more professional and more accurate with the success rate. Dr. S is not an RSD doctor he is simply a member of a group that found ketamine might work for a number of things to which RSD was added to the list. He is nothing more than a partner as ketamine is all he has and nothing else.

Lordwood, so sorry for your pain,
 

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.

Hi Lordwood.
 

I went to a PM Dr. in Co. Springs once and he sent me to see a Psych Dr. also before putting me on Moraphine for my pain. The Psych Dr. gave the ok and the PM Dr. still wouldn't give it to me. Since then I have been on everyone of the meds out there. My PCP let me try them all.

I agree. If Dr. S even thought that the Ketamine could help people full bodied, you would think he'd try it on them. No one is going to be cured with it anyway. There is no cure.

I do hope this finds you doing better. Hang in until you get to see this next Dr.

Ada

Ketamine
 

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:hug:
Sherrie

Dear lordwood,
I hear ya! I agree with you and have found Dr. S's office to be really either overwhelmed or incompetent in the last two or so years. I was told in 11/06 that I would definately be inpatient for Ketamine in 1/07. I called midway through the month and they about laughed at me! I was in agony and cried for days. And like you said how can you have rsd and the problems we all have and not be depressed?? Duh, the two go hand-in-hand as you well know. Just putting up with all the ins and dr crap makes me depressed but like you and the others I go on. I try to give myself a timeout and shut everything off and lie in the dark and pray and meditate for an hour or so and then start back up again. It sucks I know. I had to laugh because I just sent back all my 567 questions about depression too. I guess I will be out in the cold with you too. And like Sherrie said Dr. S. looked at me and said go to Germany. First of all, I don't have that money to spend and second of all, it scares the crap out of me. I don't want to be a statistic. I could never handle the ride over there on a plane. I would be dead from pain.

I think you live near me. I live 13 miles NE of Philly in PA. Where is Dr. Harbutt's office located? I still have not had the Ketamine treatment. I am trying other things like chiropractics and it helps me alot but not enough for the ins co. I am praying the chiropractics works and one day I will wake up and not have any pain ever again!! However, I have to be realistic and listen to Dr. S. because he has studied this longer than I and I know it will be a lifelong thing to deal with. Well, you hang in there and take care of yourself. Maybe a lordwood-out might help ya. Just give yourself time and regroup. Dr. Getson is in New Jersey and he is an RSD specialist that studied under Dr. S. Maybe you could call him. Let me know and I'll get you the number.
Take care,
kathy d:confused:

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.

Dr.S DID NOT START KETAMINE
 

Alot of you and even i originally thought Dr. S is the big Shabam or top dog of Ketamine but guess what hes not. Dr. Ronald Harbut was one for the first 2 to actually start the idea and get it to be used in the US. Schwartzman is simply a student of Dr. Harbut's. I am so glad i didn't go for schwartzmans program i would rather wait and have it done by a true RSD professional. Schwartzmans program is so fishy he does it outpatient and does it 4hours a day for 10 days. Harbut does it inpatient and for constant over a 4-5day treatment. So i dont know about the rest of you but i am willing to wait for Harbut's program to open in the fall and go with it. There is still hope for those of us advanced.

Here: http://www.rsdhope.org/Showpage.asp?...1&PGCT_ID=4197

I had a one day ketamine infusion in LA with Dr. Leverone. it last 4-5 hours and i was in remission for 2 months, and off all meds. because i was on ketamine for 2 years i had a tolerance, and never reached the ideal state during the infusion, which may or may not be why it only lasted 2 months. but i am in the process of scheduling another for the end of the month. and i didn't have to have a psych eval for this. i only had to have one before i had my SCS implanted 4 years ago... which was then removed a year and a half after being implanted.

Ketamine
 

So much information. I have been put on a waiting list for Dr. S for September. I am happy I have this time to figure it all out. It is very scary. I appreciate all the information you have given me. I feel very overwhelmed. Linda

Very Positive RSDer
 

Hi,

I'm responding to the person who feels that RSD patients cannot be happy and positive. I'm exactly that: happy and positive. I strive to find the good in my grim situation. I have full body RSD since August 2003 from a summer camp accident (laceration on jagged top of a fence) and a TBI from the same accident (hit head on ground after falling over fence), along with some other ailments that are not related to the RSD (ie: asthma, gall bladder, etc.). I got hurt when I was 22 and fresh ou fo college, and I'm currently 28. As I said, I'm suffering symptoms from head to toe: all four limbs/hands/feet, head, face, teeth/gums/mouth, eyes, heart, lungs, uterus, etc. -- really grim situation going on here, as much as I hate to say it. My symptoms are excrutiating and severe, and there is nothing to do about it at this point other than waiting for my turn at ketamine (seel below). Yes, it's easy to say that there's nothing good coming from having RSD. Depression is a HUGE problem in our community where 4/5 out RSDers are depressed. Well, I'm the 1/5 who isn't, and I've met many others who have the same outlook as me (I'd be happy to connect you to some of them if you'd like to hear their opinions on the matter). In part, depression can't be controlled well, and there's often no way to prevent it from happening, though, it can be made a bit better depending upon one's personal philosophies on life.

Yes, RSD has many awful things associated with it: insurance problems, moneraty issues, the pain and symptoms themselves, family/friend constraints, etc. I'm not saying that I don't have a bad moment here or there (and boy, do I have PLENTY of them), but it's what I do with these moments that's key. Whenever something bad or hard happens to me, I try to see the good in it. I have been doing this since long before RSD came into my life. I have always felt that everything in life happens for a reason, and I'm constantly striving to seek out those reasons, learn from them, and use them to better my life. So much good has come from my having RSD: I've met tons of lovely people from all over the world, I've learned about myself and life, and I've become active in a desperately unknown cause that needs to be heard. Those are just a few examples. I run several RSD support groups on Facebook, I'm active with RSDSA and some other major RSD organizations, and I always try to uphold people who are precisely in your position to help them discover the good and meaning behind their own RSD.

Sure, I would have never chosen to have RSD. I haven't been able to finish my MA at NYU in Early Childhood Education, though I still hope that someday I'll be able to go on for a PhD/EdD in Education and become a researcher and professor in the Education field. I've been wishing to be able to go back to being with children in classrooms like I used to while I was working on my BA. I've always wanted to develop my own family, and my eggs are starting to rot because I'm not well enough to date. There are tons of hopes and aspirations I had prior to this sudden accident. I still cling to these dreams, as perhaps there will be hope of remission when I get the ketamine coma (I'm in line for the ketamine coma and infusions with Dr. Schwartzman). And should I never be able to carry out these ideas, I'm sure I will find other ways to fulfill my life. I still try to live life as normally as possible and to the best of my ability. I currently volunteer at NYU Medical Center (where I mostly get treated) at the gift shop and in Pediactric Therapuetic Recreation in the Rehab wing, I tutor/mentor college students at a local public college I attended before the accident, I teach a beading class with senior citizens at a lunch program once a week . . . all in between my various medical appointments. When I get home, I crash during evenings and weekends, but at least I am finding joy in doing manageable things I love and otherwise never would have done were it not for the accident. These experiences have helped to shape my desires in life, as well as expand my horizons. It also helps that anywhere I go, people help me get through my day, else, I wouldn't be able to accomplish all of this. Thanks heaven for good people.

That's my general perspective on the matter. There are good things in bad situations, but you'll only find them if you look for them. In fact, I challenge anyone suffering from RSD depression to take a good look inside themselves to find the meaning and positive value in having RSD. If you need help doing so, I'm always glad to oblige.

While I can't comment on the reason why you may have been rejected, I do know that Dr. Schwartzman has been studying RSD longer than anyone. With the infusions, and especially the coma, he has come the closest to finding a cure than any other doctor in the history of RSD. That's a HUGE deal. While I'm sorry you got rejected, it's still not a reason to bash Dr. Schwartzman's reputation and skills. He's not only an excellent doctor, but a kind-hearted human being who has taken a great cause upon himself in the past 30-35 years of his career. Someone here said that they have to feel that you have a chance at remission and getting back to physical activity and a normal life, and this is entirely true. Most people are, in fact, denied from the infusions or coma for various reasons. While it's quite upsetting to those people, like yourself, you need to remember that there are qualifying factors to the research guidelines. Only the very worst cases are considered for the coma. If you are interested in getting ketamine infusions, there are other places in the US that do them where you can inquire -- you just need to find an experienced, reputable place. Dr. Sherry's program is also excellent, as you said, and I personally know teens who have benefitted. I understand your frustration, but there must have been a good reason if they decided to deny you. I'm sure you could get your hands on the report they wrote following your visit if you call the office to get a copy. You have a right to see your records and understand why you were denied. I hope by now that you have found other treatment modalities since you wrote this post early this year, and if you need help finding other places to get treatment, I'd be happy to help you figure it out.

I don't use these forums often. I was just caught by this conversation while searching the web. If you'd like to contact me, *edit* Please be patient for a response because I'm really not well and often can't get online. I will reply at some point. If it's been a while, remind me to get back to you because my TBI causes me to forget sometimes. And feel free to not only write to me, but send a friend request as well. I am happy to get to know anyone who struggles with this problem and do my best to help you conquer it.

Here's wishing you all a happy day! :-)

xoxoxoxox,
Marsha
*edit*

Hi there!

I just want to say that depression is a legitimate problem, and most people with any sort of disease suffer from it at some point. Please remember that it doesn't matter how long you have had a disease, it matters how it affects you and how you react to it. (Just because someone may not have had this for 2 years does not mean that their depression is unjustified.) For me, realizing that my levels of depression really affected my pain levels and interpretation of that pain was a huge turning point in treating my RSD.

You say that "my RSD needs to be taken out of the equation before my depression can go away." And while getting rid of this would be wonderful and ideal, I think that many of us know that it just isn't going to happen. So the question becomes, if the RSD cannot go away, can the depression go away? And I think that the answer can be yes. And even if the RSD went away tomorrow, would that automatically make you happy? A lot of cancer patients suffer from more depression after they go into remission because of the weight of what they just went through.

I want to see everyone living a full and happy life despite being sick. I'm not saying that it's easy, and trust me, I want to attack people when I am having a bad day and they tell me to "be happier" or "get happy". But one of the things that I have been doing for myself for the past 5 or so years is to focus just as much on my mental state as my physical state.

I too have been on tons of different antidepressants (9, before I found my current one that actually works- Cymbalta.) And I have had more spinal surgeries than I can count. (My SCS liked to move around a bit.) And it did take me a while to find a therapist that I liked and that helped. And it was one of the hardest things that I ever did, but I went to therapy for years every single week. Don't just "go through" therapists. Try to find one that is right for you, that will truly help you. I also firmly believe in meditation and mindfulness. The amount of stress that went out of my life because of these two things was, and is, truly amazing.

There is no shame in having a mental illness- and depression is a mental illness. It is no more real or imaginary than RSD. So dealing with it is just as important. To me it has made the difference between constantly suffering and being in pain. Your brain is a powerful tool, and it can be used for both good and bad. When I was younger, I used to build this wall between myself and the RSD. I always told myself that the RSD was not part of me, and that I was totally separate from it. But at some point I realized that we both shared the same body, and that if I was constantly attacking and trying to kill this part of me that was never going to go away, I was only injuring myself. Being kind to yourself and treating both your body and mind makes a world of difference. I went to a program at UCSD that was based on Jon Kabat-Zinn's work. It changed my life and was one of the best things that I have ever done for myself.

And please, I think that a lot of people would appreciate it if we didn't attack certain medications as not even being medicines. If Tylenol works for one person, but not another, that's fine, but nobody needs to make fun of it. This isn't a contest about how many meds we're on. It's about being a bit happier at the end of the day.

Lynns

Hi Marsha,
 

Lordwood said the reason he got turned down for the infusions was his depression. I believe him. When I first started with my depression, I had several Drs. that would not help me due to my depression and they said as much. I believe they feel that a person can be so depressed that their system won't hold up for what they are asking to have done. My depression was so bad that I had to sign a living will years ago because my PCP didn't know if I could make it.

Depression comes with illnesses and it can be made worse by illnesses if you already deal with depression as I did and many others do.

I couldn't have got through my depression without my Dr. councelling me and although I feel like I am at a better place, there are times I still call him up for help with my depression. Some people can't get through it alone. It depends on how deep you are in it. I use to describe it to my Dr. as being at the bottom of a well and I couldn't pull myself up with the rope and there were times I couldn't hold on to that rope any longer. He told me many a time that if I held on, he'd pull me out. I was very suicidal for years and still think that way at times.

Lordwood has delt with this for quite sometimes. He hasn't been here in a long time and I send him emails and hope he is doing ok. He has been through a lot and to find Drs. that will not help you is devastating. You get your hopes up and then it falls through.

As far as Dr. Swartzman, I have met several people that have went to see him and their visits weren't what they had hoped either. It goes both ways with Drs. Some like them, some don't.

You can't take RSD out of the equation either since there is no cure for it. People do go into remission but it can come back in places or completely.

Depression doesn't go away either because you have people telling you they love you all of the time either. I have that, and it didn't matter that they were saying it. To me, depression, is like being a shell of a person with no feelings inside of them. No good, bad, funny, sad, love, hate, you'e just there.

I have heard that line, everything happens for a reason. After what I have been through, I kept asking God what that reason was. I'm sure others do the same. I sure haven't learned it yet. I'm ok with where I am today but it took 22 years to get to that place. Actually 58 if you count I was born with depression.

We are all at a different place in this journey and a lot are just starting it so we have to let them set their own paces at getting better. We sure can't just be talked into it overnight and since there is no cure for the RSD and really no definate ways to help get it into remission or better then we are all pretty much walking not running through this journey.

Ada

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. :hug:

Cindi

Remission - Check it out!
 

I thought I would share these links with you::D

(These are some of the people who are now in remission - I think there are 9 examples.)

http://reachforrecovery.net/aftergermany/

http://brandyupdate.wordpress.com/ (notice comments on Brandy & Elizabeth)

http://blog.tracysrsdstory.com/2008/...ly-answer.aspx

http://www.rsdfoundation.org/en/Eliz...mineFLASH.html

http://www.rsdfoundation.org/en/Dr_Stocker_Video.htm

http://www.rsdfoundation.org/en/Heather.html

http://www.rsdfoundation.org/en/Kaci.html

http://www.rsdfoundation.org/en/Lindsay_Synopsis.htm

Here is another helped by ECT (that makes 10 examples):

http://www.ncbi.nlm.nih.gov/pubmed/17660856

http://abclocal.go.com/wpvi/story?se...lth&id=6623646
So about 76 people have been done- everybody comes back with great improvement- and 50-percent seemed to be cured," Dr. Schwartzman.

Never give up hope!:)

With God, all things are possible!

Another Story of Remission
 

Here is another one:

http://www.rsds.org/electronic%20ale...62008_136.html

She's coming along great, about 95%, which is awesome," said a happy but exhausted Dawn Marie. "She is more herself again and has a big smile on her face."

Deussing is now on a six-month timetable to full health. Physical therapy including incremental exercise, periodic ketamine booster shots and a minor operation to relieve the remaining 5% of pain in the back are the only bumps left to a full recovery.

The therapy will help to re-strengthen her body slowly and methodically. It is the longest part of the six-month program. Deussing has been advised to take things easy to avoid any possible retriggering of the nerve disorder.

"Being stress free is so key for the recovery and the treatment," Deussing added. "My family was really supportive of me. I later found out I was the 13th patient to have the treatment in Mexico.

"I knew it was going to work. Having a positive outlook is also key. If you go in with a bad attitude like, 'Oh, this isn't going to work,' or, 'I'm going to be sick all my life,' then it just isn't going to work."

She felt so good after the surgery she made the mistake of resuming her normal schedule too quickly, subsequently experiencing nausea and vomiting. "My body was saying, 'Slow down.' I couldn't just jump back into my life," she said.

She has some advice for others who may be facing the disorder: Look on the bright side.

"You have to stay positive. Don't give up! I've kept in contact with three patients who will be going to Mexico and patients who are going to Germany. You need to stay positive. If you have a crappy outlook or a crappy attitude, you are going to do crappy, that's the bottom line. You can't leave everything up to the medicine."

Research is being done everywhere
 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2584055/

Ketamine as an adjuvant in sympathetic blocks for management of central sensitization following peripheral nerve injury
Rani A Sunder,1 Gokul Toshniwal,2 and GP Dureja3
1Asst Professor, Dept of Anaesthesiology, All India Institute of Medical Sciences, New Delhi, India
2Former Resident, Dept of Anaesthesiology, All India Institute of Medical Sciences, New Delhi, India
3Ex-Professor Dept of Anaesthesiology, All India Institute of Medical Sciences, Currently, Director – Delhi Pain Management Centre, New Delhi, India
Corresponding author.
Rani A Sunder: rani_kannan2000@yahoo.com; Gokul Toshniwal: grtosh@gmail.com; GP Dureja: dr_gpd@hotmail.com
Received July 1, 2008; Accepted October 25, 2008.

Research is also being done in Australia, Japan, Korea, Netherlands, UK, US, tons of places.

They are having success with mirror therapy, physical therapy, ECT, various infused medications and even, in some cases, surgery.

With the use of functional MRIs they can see the brain reversing back to a normal brain pattern. It is not usually a quick fix but it is possible!

Dear Ada,

I have also had periodic bouts with depression throughout my entire life. Not sure why. I married a terrific man close to 25 years ago and we are still very close. My kids are really decent kids. I think I might be like you, perhaps we were just born with some chemicals that need tweaking.

I am fortunate in that I am extremely strong willed and determined, very disciplined, and remain high functioning in spite of my RSD - my legs and feet still work but I walk many miles a day and there was a period of time last year when walking those miles was excrutiatingly painful. After 4 Lidocaine infusions my right leg is much better, but it does have RSD.

Like you, the black hole of depression beckons at times. And since taking my leave of absence from my job early last summer I have spent countless hours with tears just dripping off my face. Go figure - how many people would have relaxed and enjoyed a summer off in the "Ocean State?" Instead, I cried and cried. And continue to do so on almost a daily basis. Reducing my Fentanyl did help a little, when I was one level up from the patch I am currently on I could not talk to anyone from my family on the phone (they all live far away) without completely breaking down. It was totally unnerving (for them too, I'm sure).

Thanks so much for your candidness on this subject. It helps to know that there are others like me.

I am working hard on learning the mindfulness based stress reduction program to reduce my pain. There is a good book called the Mindfulness Solution to Pain by Dr. Jackie Gardner-Nix. I bought it on Amazon for about $13 or so, it was worth it.

Thanks again, XOXOX Sandy

Hi Sandy!

I just wanted to give you a link to check out. It's the UCSD MBSR program website, and it has some really great resources. It has guided meditations and relaxation exercises that you can download. I commend you for being proactive on this- I know that it's hard, and self examination can be brutal sometimes. But I know that for me, this program was one of the best things that I have ever done for my pain or myself.

Have you ever thought about seeing a therapist/counselor? Sometimes it really helps to talk to someone who is outside of your life and has no attachments to you. It does for me at least. I don't like talking to my family and friends about RSD because I feel guilty for burdening them. But with my therapist it's really different. Just a thought. Hope that this site helps out a bit. And I know that there are similar programs all over the country. Google and check it out!

http://mindfulness.ucsd.edu/mbsr.htm

Lynns

Hi Sandy,
 

Thanks for talking about your depression. I think being on the forums also helped a lot. I met one lady on the BT forum years ago that was just like my Dr. She would call me anytime of the night to check on me or I'd call her. The first time she called me it was around 2 in the morning. She told me to send my phone no and she'd call me. I credit her, a good friend here and my beloved Dr. I actually called him at 11:30 at night begging for help. He'd talk me through it. Bill was sick at the time too, but he was great about helping take care of me. Bill and I were married almost 35 years when he passed away. I have a lot of family and friends now that help me out a lot.

As far as a chemical imbalance. My Dr. told me years ago that I was missing a chemical that fights off cancer and diseases. I've always said there wasn't anything normal about me. When I saw him Wed. he was laughing about it because now I am having to switch stomach meds due to having an allergic reaction to the Prevacid. I sure don't do meds too well. I'd rather deal with the ailment then the meds at times.

I can spot a depressed person a mile away but I have only met one in person that was as bad off as I was. We signed ourselves into a mental facility around the same time and they threw us both out just about. I couldn't take depression meds, so they didn't want to bother councelling me. I think they thought we were too hard of cases to deal with. After seeing a couple of other Councellors that were useless my PCP just said forget it, he'd councel me. It's took him over 10 years to get me this far but he's been my Dr. for 19.
I do believe that councelling is important for some people to help them get through what they are going through and trying to deal with the pain but unfortunetly, a lot won't admit they need help to get it.

Now I might be able to enjoy that vacation you were talking about. I did go back home last year for a visit and got sick the second week so it would most likely have to be a short one.

I always thought I was a weakling but I know now I am not. Like you, I walk a lot. For 8 years I walked and cried at the same time. I'd walk 3 miles a day and cry the whole time in pain and depression.

Meditation and prayer is very important for people with depression. My Dr. taught me Meditation and gave me tapes on it. He prayed with me many a time and encouraged me to keep walking.

Answering the phone was not one of my big things when I was at my worst. I hated answering it to talk to anyone. I had a select few I knew I had to talk to so I'd know they were all ok if they called me. I still don't answer the phone a lot of times only because I don't feel like talking.

Books and hobbies help also. My PT's receptionist gave me the best book on depression years ago. I wish I could remember the name of it. It was a ladies story and that book seemed like it was written about me. I gave it to my Dr. so I would say he has it in his Library along with the RSD book I gave him. I wanted him to read it to see what I was living with.

The meds do add to the depression, that's why we worked so hard for me to get off of them. Even the Prozac and Zoloft made me more suicidal.

That's why I worry about certain people when I know they are going through major depression. I know what it's like to want to end it all. I have know 9 people in my life that committed suicide. So I know it's all real.

I love that lidocaine too. I swear it's what has helped me. It was a slow way of getting it, through 1000's of shots but it worked. Luckily, my PCP is also a Sports Medicine Dr. so he knew how to deal with pain and what he didn't know he learned. He also gives painless shots. LOL I'm not completely pain free but I do feel like I am pretty much in remission with it.

Sandy, I hope you are at a better place today then you were. Stay here on the board and talk to everyone and enjoy what you can of life in the real world.

Ada