Hi Amber,
 

I always said if I went with anything it would be the pump. I have seen to many negatives around here with my friends to do the SCS and I see more on here as time goes on.

As far as Drs. I don't know if your Dr. is a PCP or PM but if he is your PCP you could maybe just be asked to be sent out to a PM Dr. Some PCP's donot want to give narcotics and other strong meds. My Dr. of almost 18 years is a PCP and a Sports Medicine Dr. and he will give me anything I want. Of course he knows in the end, I'll say I can't do it. That's a running joke with him. LOL But he is good enough to let me try it.

I've always said though you can love your Dr. but if he isn't doing what you need at least try to find one that will. I go in everyonce in awhile frustrated and say, I'm going to go see a Dr. for this or that and he is most always ok with it. I just get so desperate to get rid of some of the things I am dealing with besides the RSD. That's enough for me. The only Dr. we fight over now is a TOS surgeon. He cringes when I mention TOS surgery.

Go back to him and ask him if he will let you see someone else that might give you and him some input on what to do.

I sure hope you start seeing better days.

Ada

Thanks guys!!

My doc is a PM doc and i have seen him since the 6th month mark of my RSD. He has been since day one playing catch up to RSD and never got ahead of it and i think thats whats the prob, that he wants to get in front of it , when obviously its not gona happen!!

I also think in the back of my head that if i go see another doc and he tells me the same thing, that im gonna loose this current doc that is giving me some pain meds, (just vicoprofen, lortab) and then i will be left with nothing and stuck worse off then i already am....

It doesnt help that we have all this time on our hands either to think about this!! lmao.

I would kill to have an epidural block right now!!

Phone's ringing.. be back laters

Amber

Amber,
So sorry that things have gone pear shaped for you. I do hope that you'll be able to get some sense from your doctor soon.
Love Tayla:hug:

Hi Amber,
 

I was thinking if you could ask your Dr. if you could go to another Dr. to see if he can give both of you some input on what to do.

I never go to another Dr. without talking to mine due to the Methadone I'm on and I don't want him to think I am going to Drs. without his knowing it.

This happens a lot where people go Dr. shopping. They have one Dr. and go to another one without letting the main one know it. There are drug seekers out there and that's what causes people like us to have to walk a fine line because we do need the strong meds.

If you approach him and tell him you'd like to see another Dr. and make it sound like you want input for both of you that might help.

I use to feel like you do. Then I got to where I was so desperate for answers I knew I had to talk to my Dr. about seeing others. When I went to see my Gyno last week, I called my Dr. to let him know I was going. He was ok with it.

I sure hope you find answers. I know you need them.

My computer is acting up again and every time I try to answer anyone it messes up so I don't get on here much until I get it checked out again. It took me 3 tries to get you answered.

Ada

Thanks Ada!!! I appreciate your words and I take them seriously bc you have gone through this!! I am just lost and found one doc that might see me but i have to send him a whole bunch of med records and then they will make thier decision!! grrr. so i am in the process of deciding to call my current PM doc or do i send the potential new one the records i have..lol. I also made a call to anther pain clinic that is about an hour away ( none closer thenthat) and they asked me about my RSD what treatment.. told them that i have 2 stims and the oral meds im taking are not helping and my current doc doesnt know what else to do . And she came back with, "well.. i dont think we can help you either since you have 2 stims and they dont work".. I was like well can there be other meds to try .. and she then again came back " I am assuming you have been on narcotics and since the stims dont work we cant give you anything stronger then what you are prob are on. " I asked if they treated patients with Ketamine or Methadone, and she was like , " well im not sure but i dont think we have any patients now and it will be very unlikely tht if i were seen that i could get them" I hung up and cried for about an hour and was like.. what the heck am i going to do.. and why me...

I have heard in the past from other docs that if i were to switch docs that i would have a heck of a time getting one to see me since i have 2 stims in me and meds are not working. Docs dont like touching another docs patients is what they said... soo??? Im lost...

:(
Am

Ketamine
 

Amber,
I had the 5 day awake Ketamine infusion in Manhattan. You can see the doctor in Manhatten just for a ketamine consult and infusion-Not to switch doctors- that is what I did- I had the infusion and then went back to my doctor, - If you want his info you can email me at spudsailor@aol.com- He is really a nice doctor

Debbie

not so bad?
 

Hi Marla - if you're interested in ketamine treatments, the different types, and how they turn out, you might want to read the new article by Schwartzman which I posted as an attachment in a separate thread this week. It's a little more hopeful that what Kirkpatrick describes.

Hi Amber,
 

I am sorry that you are going through this. I can imagine with the Stimulators in you how hard it is to find a Dr. to see you. I have had them not want to see me just because I have too much wrong with me. I can't even remember how many times I have heard that.

Have you ask your Dr. about Methadone. I am on a very low dosage and it does help. Sometimes I think with any med, you should start low and work your way up. It wouldn't be such a shock to the body. My Dr. always starts me out at the lowest dosage also. He just uped my Methadone last month for the first time in over 4 years. I ask him if he would and he did no questions asked. My thing is this pelvic pain right now. I do know though if I go off of it, my RSD shows it's ugly head. Yes people die from Methadone but what we are seeing they are dying from a lot of meds out there.

Also with the ketamine, I was wondering if your Dr. could get it for injections. It takes a lot of injections in different areas but they do work. If he targeted your worst areas then maybe the referred pain would die down. My Dr. gives me injections with Lidocaine and when I was at my worst he used the Ketamine.

These are just ideals. I do know what you are saying though with the SCS's. I always worry about when my Dr. retires what I will do for my meds and I have the VNS in me.

Don't give up girl, there are good Drs. out there that don't care to take a risk. I have several

Ada

I have heard in the past from other docs that if i were to switch docs that i would have a heck of a time getting one to see me since i have 2 stims in me and meds are not working. Docs dont like touching another docs patients is what they said... soo??? Im lost...

:(
Am[/QUOTE]

One strategy to try is to have your doctor call the clinic directly. Doctors will always take calls from other doctors, whereas when lowly patients call, they get shunted to the rude nasty front office staff or nurse who is paid to get rid of hard patients. I think there is a secret doctor handshake!
Seriously. Ask your doctor to help get you a "consult". Surely he will understand your frustration; he probably shares it.
Don't give up just because your doctor has reached the limits of his comfort zone and/or knowledge! This is so common with RSD and treatments. You can search PubMed for the latest articles and get up to speed, too - knowledge is power!