HI guys,

I am feeling better!! double cheese burger always does it along with pepsi and choco!! lmao..

Marla,

I have 2 stim's implanted!!! I have a spinal cord stim that was implanted 2003 and I also have a peripheral nerve stim thats implanted in my RSD thigh and connected to my sciatic nerve and that was implnated in 2004 or 5.. cant remember with out going back and looking at my ID cards. They both stoped working about 5 mos into having the perm one put in. I had the SCS revised 2 times and my doc just said i was the 1% of the population thats nerves reroutes itself around the stim.. which makes the stim null and void.. my luck huh!! and the PNS just goes to the knee and not to the foot where the worst of the RSD is. Well now that its gone full body they wont work anyhow.. grrrrrr I have had RSD now for 6 years and have tried anything he was willing to do!! even botox!!! Im just tired of being in pain and not haveing any control over it and him not willing to give me stuff i obviously need!!


Amber

PS I needed to laugh thanks for all the opps!! thought i only did that kind of stuff!!

[COLOR=Purple][FONT=Georgia]I am so glad I was able to make you laugh....it sure was frustrating for me when I was doing it though. I was using the quick reply and thought the font needed to be a tad bigger.....well, it sure 'nuff was.....then the second time it had held those settings and did it again....I felt so stupid!! But I was cracking up all along the way as well. Thank God for Chemar, because if she wouldn't have resized it, you would still be reading the first post because each letter would have been a new web page all it's own....hahahahahaha

But wow Amber, you have been through the ringer haven't you!! I can totally understand why you want something to help ease up the pain levels but it sounds like you have the same kind of luck I have...the kind that if there is a slight chance of it happening to someone....you can better believe it will be me it happens to. I am so glad you are in that same group...I was getting tired of being the Chair person, Treasurer, Secretary, etc., heck, I haven't even named the group yet....hahahahahahaha. Don't mind me, I am just rambling along aren't I? hahahaha




So are you going to go through with the pain pump? I wonder how effective those are for us that are full body RSD.....could go either way like anything else huh?

Here's a Pepsi for you

Love, Peace & Blessings,
Marla

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

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