Barbara,
I haven't read all of your posts, I've been a bit busy lately, but your complaint about the "burning" is what caught my eye in this post.

Have you ever tried Methadone?
It's the ONLY thing that has ever really controlled that for me. There are others here who use it. And, it's downright cheap. Not too many side effects, no buzz, like that.
I'd recommend you ask your doc about it..

As for the SCS, Never for me. Most I know have had to turn them off, and/or have them removed. I think the pain pumps work better. There's another list on this board for those.
Be well!

Pete
asb

Hi Babs,
 

I agree with Pete on the Methadone. I love it. It is the only med I ever found that does the job for the burning pain.

It's best to start on a low dosage and work your way up on it if you try it.

The worse side effect I found was the sweating it can cause. You notice it more in the summertime.

It runs around 40. a month for 90 pills if your insurance doesn't cover it.

Ada

Ada;
FYI,,
I just got 180 10 mg. pills for $10, at Rite Aid.
I was surprised, as last time, it was about 23 dollars...
(My insurance may have something to do with it)..
All in all, so much less expensive than things like oxycontin..etc.

Be well all!

Pete

i cant get a dr to give me anything other that lyrica and naprosyn. they treat me like a junkie. and i havent taken anything yet. if i ask for anything they go ballistic, and act like i need to be at narcotics anonymous or something..its humilating. they made me feel that way asking for something for nausea, it made me so mad. i said. ok i am done.. started looking for new drs. have been looking for several weeks. no luck.

In considering the 5 day
 

[
hi I wanted to jump in on keepsmilin plan on deciding on the 5 day at Drexel. Your analogy is a good one, I did put my self in a horrible downward financial spiral having it twice. However what it will do is basically remove alloydina from your body and greatly control edema. In those two categories it offers almost complete pain relief for an extended period of time. Lets say my alloydina full body was a 10. It permanently became a 4. that was very significant to me. Now I still have all the other horrible pains of rsd and take the strongest meds available and had the coma... so its a decision .. but my alloydina was so severe the 5 day was worth it for me. And I agree Dr. s is the greatest doctor on the planet to me. the kindest man in the world and most compassionate.! Hope this helps. dc

QUOTE=keep smilin;640583]Thxs D~

The 5 day sleep is not the same as the "coma"..The 5 day is an inpatient sleep..@ Drexel at a moderate does of Ketamine..The coma is 5 days High dose done outside of the US..Germany or Mexico.. Now there is a low dose out patient infusion that ne is awake for..that is 10 days of infusion..4 hrs. for 10 days..I paid out of pocket to see Dr. S inticially also..They explained to me that private ins..has NEVER approved the Ketamine intervention..so I am feeling backed into a corner more than ever now as my RSD ..Dr. S said is whole body and internal..and my ins. won't jump on so .. it is a wash.. but I won't stop appealing it..I absoultely hate the thought of being asleep for the 5days ..it may not become reality anyway so I am not going to fret..and I refuse to put my finances in a downward spin for some pain relief which may last a short time or not at all...Maybe me sounding crazy but kids are going to college soon..

Hugz, Kathy[/QUOTE]

[/QUOTE]



Dear DC... I really really apprecite your post..Thank you and yes..such a decision... Can I ask you to elaborate on the other pain from RSD that you still suffer?????

Hugz...Kathy

NY Dr??
 

Good afternoon. If you don't mind my asking, what doctor do you see in NY? I am inwestern NY(Buffalo area) and am looking for a doctor who deals with ketamine and/or pain pumps as I believe that is the next logical step. Thanx in advance for any info!!

elaborate on remaining pain
 

Dear DC... I really really apprecite your post..Thank you and yes..such a decision... Hugz...Kathy[/QUOTE]

Hi Kathy,
My worst pain now is deep bone pain, freezer burn internal ,not outside alloydina,deep constant severe aching, sharp shooting pains severe shocking,severe spasms, grippers, lesions. weakness. loss of strength , sharp pain with use of legs or left arm. always freezing.live at a base pain of 6-7 flare to 9-10. high flares last in intensity from 2-10 minutes with emergency meds adminsitered. things arent going so well very intense bouts of pain. thanks for asking. dc-wanted to add this isnt pain but i have alot of jerking movements,hands , face, arms etc.

the 5 day is not the coma but is serious medicine
 

Hi its me again, I did want to add that the 5 day in ICU is not the coma everyone is right but I did want to emphasis it is very serious medicne. I found it to be very challanging. It is a huge step up from the 10 day and 5 day out patient.it would be like a coma compared to that.

It is a very serious treatment thus the setting ICU. and you have an intensive care nurse with you 24/7 a pic line etc. so do think about it.

Having said that if it is being offered your lucky the last time Dr. s wanted me to have it we could nt get hahnemann to agree to it.I guess they are allowing them again but its a program that is on and then off again so the opportunity may not always be there.

My insurance paid for the 5 day twice. Carol and dr. s office talked to them and got them to pay. My insurance is united health. so I would stick with your plan of trying to get your insurance to pay..

it is the same as a year of physical therapy with you cant have you have to present it to them or better yet carol. good luck .dc

? Dr. Schwartzman & Dr. Kirkpatrick
 

I have great empathy for your desperation in wanting to try the Ketamine infusion. I do not have experience with either Dr. Schwartzman or Dr. Kirkpatrick because I live on the West Coast. However, I did undergo a seven-day out-patient Ketamine infusion in June, 2009 that was sadly unsuccessful. My Pain Management Specialist began offering Ketamine infusions in January, 2009. To date, all of his RSD patients with the exception of me have received benefit, ranging from limited to significant.

Expense was a consideration, as none of my procedure was covered by my insurance. I paid $12,000 out-of-pocket. My doctor wrote off $47,000 in charges by the two other anesthesiologists who performed the procedure because he had compassion for our family, as my husband had recently joined the unemployed and I am disabled.

There is a strong alternative to the Ketamine infusion that I do not see mentioned in NeuroTalk and that is oral Ketamine. Perhaps it is not mentioned because most everyone is already taking it. If you are not, I recommend that you ask your doctor about it. Inexpensive, it can be compounded by any compounding pharmacy and is believed effective because it works on the NMD-A receptors. I believe my monthly cost is $68 per month. There are two research studies supporting oral Ketamine, one done in Australia with RSD patients in the mix of subjects. One neurologist with whom I consult refers to it as "the gold standard" for RSD treatment.

If you have not tried oral Ketamine, you might discuss it with your doctor.
It has been covered by my insurance and has made a significant difference in my pain management.

Best wishes to you!