just got back from docs....
 

Ok, now I am both confused and depressed after this visit.

First of all my doc has a new PA that see's pt's before he comes in. He is new and doesnt know me from adam!! (or eve..lol) He asked me all my history from the past 6 years with RSD, made me undress so he can see my legs and he proceded to touch them and see if would react to him touching... holy cow i was soo close from kickin him in the balls when he touched my foot!! he was sooo lucky that i had knee controll!! So it ****** my legs off and just made me want out more!! Then my doc comes in and says that there is nothing really left to do, other then the pain pump and i am still leary about it and so is he, he asked what meds I am on and I SWEAR to you that he said to give me Klonpin.... well my scipt the pa gave me was for clonodine hcl 0.1mg. I have been on the patches of this when i first had RSD and it did nothing but made me have hot flashes and fast heart beat. And of course when i relized this his office is closed... He wont give me anythng else besides this i guess.. I asked him about Ketamine and he said its not FDA approved yet and everyone out there must be on a clinical trial... Is this true?? He also confirmed that i have gone to full body RSD. The worst is in my lower extremities and the RSD is gettng to my hands and writs and elbows. I am running outta hope here and im not usually the one that does this. I love love my doc!! but yet if I konw that there are people out there getting pain meds and other stuff that he's not willing to try.. y stick with him?? I have seen him now for 6 years and i cant say anything bad about him other then he just wont give me pain meds and i dont want to ask him is it bc of the issue out there about docs giving out strong pain meds... i give up!! I need chocolate and a pepsi and I only have one of them in the house..lmao.

Thanks for letting me vent and if anyone can help.. i would love to hear it!! anything.. ...

;);)
Amber

Wow, sorry you had such a bad visit. This is exactly why im switching my neuro pm doctor. He has me see assistants who dont know to much in my opionion about rsd as they prescribe the meds. If im going to be treated with rsd im going to see the main doctor. From what i hear ketamine coma treatment the five day one is not fda approved in us. But i do know of some who are getting ketamine treatments via other methods? Ill look up some info i can find. Personally im not so sure about the ketamine.


JoJo

I edited the font size for you Marla :)

usually size 4 is about the max without it going huge :D 1st post i took to 5, second to 4 FYI

I just found this on Ketamine
 

Ketamine is a legal anesthetic often used by doctors, but in low doses. A high-dosage ketamine coma, which Sutton experienced, has yet to receive a thumbs-up from the FDA.

Dr. Kirkpatrick said he tried to get the coma approved in the United States, but gave up after growing frustrated that the agency wanted more trials and information on the procedure. So he sought help from doctors in other countries to treat some of his patients who suffered from RSD. The treatment is also offered in Germany.

Kirkpatrick acknowledges that patients who undergo the ketamine coma may not wake up again. Some wonder if that's a risk worth taking.

"That's pretty risky, to put somebody to sleep for five days and suppress their reflexes," said Dr. Elliott Krane, a professor of anesthesiology and pediatrics at Stanford University's School of Medicine. "In the United States, that would require an intensive care unit."

Krane said that while a ketamine coma could work for some patients, getting FDA approval in the United States would be difficult.

"Anybody could do it (a ketamine coma) in the United States, if they wanted to," Krane said. "They could do it in their garage, I guess, but it wouldn't be a smart thing to do.

You would never get an American insurance company to pay for it because it's such a wacky idea.

"It's one of those things you can get away with 90 times. But on the 100th time, you're going to kill somebody."

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!!

:hug:
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?

:Girl(angel-flying): Here's a Pepsi for you :pepsi:

Love, Peace & Blessings,
Marla

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!

Amber,
My question is also, can they remove the SCS's that are not working??

And since you are only on Vicoprofin why is it the last doctors office you talked with said that narcotics are not working? If I were to run out of Morphine & my doctor had to call in a pain medicine for me it would be Norco. Norco is a stronger form of Vicodin with less tylenol in it. It has 12.5 of hydrocodone & 325 of tylenol, Where as Vicodin is either 325 or 7.5 of hydrocodone & either 325 or 750 of tylenol. He would prescribe for me to take 4 Norco in place of 200 mg Morphine. But it still would not be near the dose the morphine is of course in pain control. I take Morphine every 8 hrs. Norco would be the same. It just wouldn't work near as well. There is always Fentynil to use which is stronger than Morphine. I know when RSD hit me at first, the PA I was seeing would only allow me 3 Norco a day. Talk about NO pain control. I darn near could have comitted suicide if that kind of pain control was all I could have ever found. I would not have wanted to live at all so I can so totally feel where you come from & I am really sorry that you are having to go thru this. The very first pain management doctor I went to told me he absolutely did not believe in prescribing narcotics at all for patients with RSD. I do see him but only for him to do procedures. SGB's or LSB's he does for me when the PM Dr I see now prescribes them for me. I need to get in & have my hands done. They are starting to act 'up' I guess you could say. This will be the 3rd yr in a row I have had SGB's done to keep my hands from going full blown RSD.

Well anyway I hope this made since. Just know I understand how you feel & what you are going thru. And I do not see anything wrong in trying to find a doctor who will address your pain by prescribing narcotics. They do help me immensely. And I have stayed at approx the same dose of Morphine for 3 yrs now. As long as your current doctor knows you are looking for help with your pain & he is ok with it go for it.

Take care & wishing all painless days & nights,
DebbyV