Hi Dan,

So sorry to here you are suffering with RSD. It's a really tough disease to get under control but many do and early intervention is very important.

From my experience with Lumbar Epidurals and what I have been told by my doctors is if you don't get relieve or your pain is worse then maybe it's not the correct treatment. But it is only the first one sometimes it takes a few.

I just want to ask you a few questions if you don't mind. First I hope you are bringing one of your parents with you when you have your PM Appointments, I've seen the good, bad and the ugly you always should have someone with you especially at your age, I also have a 20 yr. old son, does your doctor when administuring the epidural use flourosopy guidance which is a type of tool that allows the doctor to see on a screen exactly where the injection will go , what does your doctor say when you say "you can't twist, or bend or ride in a car" and last how long have you been going through this?

My personal experience with spinal epidurals is as such: I had 4 over the last 4 years. The 1st was great total relieve but 6 months later I needed another which didn't work at all, then I switched doctors same office my insurance changed and this guy did the last 2 and it was absolutly complete relieve, my last one was April 2010,so that's pretty good. So, yes it can go up and down and each persons situation is different. Most doctors don't like to sedate a patient when doing an epidural, they like the patient awake so he/she can ask if the injection is hitting the area of discomfort, but truthfully I have asked to be sedated and yes they do sedate me when I have them done, but I have known these doctors for 7 years, I would never do sedation unless I felt comfortable with the doctor and facility.

Try not to let it get you down. It's a tough road and if you read on this site many go into complete remission and you are young which gives you so much more of a chance of remission. I have read for some reason young people are
more likely to go into remission then someone like me who was 43 when I got hurt. Keep positive this is a great site with many people who are going through the same thing and there are some young adults like yourself on here also.

Gabbycakes

I only have my mom and it's tough for her to come to all the appointments, but she does her best. She'll be there today.

And thank you for the questions I don't mind at all it's relieving to know that someone who gets what I'm going through can ask constructive questions. Yeah he uses some kind of x-ray thing or something to see where the fluid is going. He doesn't ask if I can twist or bend but the sheet they leave me with after says not to ride in a car for 8 hours after. The first one was pretty clinical I was kind of in and out, they gave me lyrica then I had to call back and wait a day of terrible pain for a script of percocet to be filled (god forbid they give me something that actually works) since I'm technically not a patient until tuesday when I sit down with the Dr himself as the they think the Dr who referred me is my Dr, but he is just a family friend who was helping out and rushing me in there so I could be seen as he couldn't take me on as a patient for 2 weeks. It's confusing I know I don't really understand it either, as I thought time was of the essence with this.

They used a local anesthetic last time but it only lasted for maybe 45 minutes then my back killed on top of my knee & calf still killing me. And all that has happened since the first one was an increase in pain in my calf muscle and the feeling that it's spreading. To be honest I would rather be sedated as it's not like I could feel anything there at the moment of impact, and once I saw the size of that needle my only thought was "Holy $#*1, you're sticking that big thing in my spine?".. Now I know that most people go through this, I just hate needles and this was no IV needle, unless you're sticking a grizzly bear.

Thanks again for your support I'm trying to stay positive it's just tough going from being 6' 185 in excellent shape to under 175 and skinny as hell. It also sucks when you had a small drug problem that you're over with but caused you to have a high tolerance. So they act like they're doing me a favor by giving me perc 5's which don't touch the pain unless I take at least 2, usually more like 3-5 when I'm really flaring up, but then I run out and spend a day or two in excruciating pain. And those don't even touch the muscle spasms.

Sometimes I feel like I'd almost be better off saying &%& it and canceling my health insurance saving that money and getting meds that actually work. I know that sounds stupid but it seems more pro-active than this useless stuff. The first one didn't help anything and if anything just made it worse, so I'm pretty disenchanted especially when I read so many people not getting relief or it even making it worse with these spinal things.

I understand the whole "we don't want people hooked on meds" stuff but honestly I'd rather be hooked on something that works so I can go back to work and at least exercise in some capacity, instead of being 20 and walking around with a damn cane like I'm 92 yrs old.

/rant

You can get ketamine in NY. Call the RSDSA for a list of doctors in NY. 877-662-7737.
Insurance paid for my daughter's and many others. Sometimes you have to appeal but the FDA has approved ketamine for breakthrough pain so it is getting more and more acceptable all the time. Can't hurt!!!

I guess we might have found a Dr. that does it, a family friend named Dr. Argoff, but his schedule is wicked packed so I'm not sure it's a definite.

I wish I could just do it myself cuz honestly I can get ketamine easier than a pain patient seeking a legitimate route. Now I'm not going to do it cuz I don't know how to do the procedure, but just goes to show how stupid this country is.

Hi Dan,

I'm so glad I was apple to help.

I would be lying if I said I don't take any pain meds. but I have come from 35 pills a day in 2003-2007 to almost nothing. I have done ketamine 3 - 5 day inpatient infustions which did help tremendously. But I had to do 3, which was a drag, believe me.

As I think I mentioned I have been with the same group of doctors for 7-8 years and I was always preached to "once all this is over you will be getting off the medication" and I did. My doctor would always tell me to much of pain killers will actually make you worse in the long run you really have to keep it in check. So, please don't say "I'll cancel my health insurance and buy from someone else", thats really not a solution.. Remember I have a 20 yr. old college student and he tells me everything, sometimes I don't even want to know. But we where all 20 at one point so I get it.

I actually have never seen the size of the needle, I'm a big baby.

What part of NY do you live? Are you close to Manhattan? I hope you appt. goes well today . Keep us posted.

Gabbycakes

Well I had all this typed out and accidentally hit the back button.

Basically long story short I sat in a hot waiting room for way too long, got funneled in like a dog being put down, then accused to dr. shopping even though I have had a prescription to anti-anxiety meds for 2+ years now, and they help tremendously with my anger and anxiety (often related, and when I say anger I don't mean swearing I mean breaking thousands of dollars worth of **** and beating the **** out of people that cross me).

He then goes on to say that if the first block didn't take, that I shouldn't have another, something I thought all along but everyone else including his own employees said I should stick with. And then, he says in order to get another script of percocet (pretty much the only thing keeping me from the street right now), and a consult with him tomorrow, I have to submit to a drug test. So whatever, I already wrote cannabis on my check in paper, so I **** in this cup just so I can meet with him tomorrow to tell him how much of a f*****g c***s*ck** he is. He said all of this in a very domineering tone as if I'm not a man.

And yes, my mom was there, but I wish she wasn't I woulda stabbed that *** **** with his own horse needle.

And sorry for my language edits but that's the only way I can convey my emotion here

And I live in Albany.

Dan,

Sorry to here you felt treated so badly. PM is a funny business it can be a great help and or it can make you worse. You want someone who is going to watch out for you in regards to medications. To me thats a smart doctor anyone can write a script. So my advice to you is to take it down a notch and try and work with this doctor if you and your Mom think he's good and can help you. There's not a respected PM Doctor who will work with anyone who is arrogent and nasty. They are to affraid of losing there license. Unfortunitly, many abuse there medication, use it recreationally try and get in sooner, thats not what PM is. You stated you where an athlete, if I where you before you go to your appt. today move your body if you can even if you walk 25 feet in front of your house/apt. and try and relaxe. As an athlete you know how good your body can feel when it moves. Exercise for me is something I have to do everyday to beat this beast. I go to gym 3 times a week and walk the others I can't do everything but if I didn't do it I would be misreable. I could not do all this when I was going through 7 surgeries, 3 ketamine procedures etc. when I first had my accident. My problem in upper extremety so it's easier but I do have a slight spread of RSD to my back like I stated in my first post.

I told you before I have a 20 yr old son he was also a althete from 7-18, played ice hockey. We traveled around the Albany area all the way to Lake Placid. He hasn't picked up his stick but for 1 time since his last varsity game he just had had it. But the point is he feels the effect on his body from not working out all the time, being on the ice 7 days a week blah, blah. The point is excercise helps RSD. When you get time today look up Dr. Sherry in Philadelphia. He is a pediatric RSD Spec. He has a very interesting take on RSD and how to cure it,especially for young people up to 18. I believe the University of Chicago is working on a simular treatment for adults. Just read it.

I see alot of my son's friends who I have heard display behavior such as you described in your post.Again my son's know angel but never displayed that kind of behavior. Its tough for young adults today I definitly get it but there's no excusse for that kind of behavior. First it increases your stress which will flare any kind of medical condition not just RSD. So like I said before take it down a notch, try and get some kind of body movement so you feel a little better before you see this doctor today. If he is willing to work with you,you need to show him you are responsible.

Dan, good luck today. You need someone to work with you so you have to work with them.

KEEP US POSTED.
Gabbycakes

Don't know where you are in NY so I am posting what I found:

New York:
Durkin 631-638-0800
Waldman 212-606-1015
Haider www.killpain.com
Hertz 212-523-6357
Northshore Hosp 516-496-6506

New Jersey
Getson (worked with Dr S and has great rep)
Zampella 973-285-7800
Camden (no doc name) 856-983-7246

As a word of warning.....prob not a good idea to mention your previous use of ketamine!!! They probably will not want to take you on. The K infusions are a little diff anyway.
If you do the outpatient they will give you a three hour infusion mixed with Versed and prob Ativan. In patient is 5 straight days. I know a doc that is not on there that does in patient. Richman in NYC.

Good luck to you...I hope you consider trying it.

Liz

2 editorial fixes for the list above (we should tell Jim Broatch):
Richman is with Waldman at the Hospital for Special Surgery.
The Camden, NJ number above is actually the number for Getson in Marlton, NJ He used to also be at Cooper Hospital, which is in Camden.

Dan,

Gabby is right on. My message wasn't strong enough...try to behave yourself!! Sorry to sound like such a Mom, but we all care about each other here and don't want to see you get blacklisted by all the docs in your area.

I also have the latest list of ketamine docs from the RSDSA (the info that Betsy gave you) - from what I can see they are all in and around NYC and Long Island. There are a few in New Jerrsey. I don't see any in northern NY. But the treatment is worth traveling for, I went over 300 miles from RI to Marlton, NJ to Dr. Getson for my first 22 low dose ketamine infusions almost a year ago now, it has changed my life!! I returned to my full time job after a year's sick leave from my RSD.

Please take care, Sandy