An 8 is great progress already and if it's only in her arm, I would think she has an excellent chance at keeping it there since it sounds like it's been getting treated before it's spread. Mine got the chance to spread down my entire life side from head to toe through ten years of mis diagnosis so if i ketmaine can do as much as it has for me, I'm sure it can do wonders for your daughter.

It does tend to reach a plateau at times in the hospital tho but then after coming home, day after day and week after week, you can see that 8 go to a 0 so even if she leaves the hospital still at 8, please do not lose hope as my fiance and I almost had. My Dr made it very clear he's seen people on day 2 have dramatic reductions and others who seemed to have a light bulb seemed to off two week after treatment.

Also, going home from a week in bed is not the same as out patient treatments and she will be uncomfortable and likely have some side effects for few days or so and it's all very normal but unfortunatly stuff Dr's don't have time to tell you about in advance so if you have questions, keep asking, I remember them all well.

If her pain level hits that plateau, instead of asking her pain level, if you can, just try to distract her and keep her spirits up. Nothing upset me more then when I saw the look of fear and concern on my fiance's face as he spoke with my Dr on day 4.

When I saw my Dr a 6 wks later, he was shocked at how well I was doing so you really never know.

The blocks if done in the hospital are usually just more for exploratory means to see if they can try to pinpoint the source but if it is only in her arm, they probably wouldnt do it.

Thanks for this info. She was really discouraged so this gives her hope!! I am sure I will have more questions as the days go by.







QUOTE=Reddawn600;739510]An 8 is great progress already and if it's only in her arm, I would think she has an excellent chance at keeping it there s

It does tend to reach a plateau at times in the hospital tho but then after coming home, day after day and week after week, you ca week after treatment.

Also, going home from a week in bed is not the same as out patient treatments and she will be uncomfortable and likely have some side effects for few days or so and it's all very normal but unfortunatly stuff Dr's don't have time to tell you about in advance so if you have questions, keep asking, I remember them all well.

If her pain level hits that plateau, instead of asking her pain level, if you can, just try to distract her and keep her spirits up. Nothing upset me more then when I saw the look of fear and concern on my fiance's face as he spoke with my Dr on day 4.

When I saw my Dr a 6 wks later, he was shocked at how well I was doing so you really never know.

The blocks if done in the hospital are usually just more for exploratory means to see if they can try to pinpoint the source but if it is only in her arm, they probably wouldnt do it.[/QUOTE]

ShannaS, I had a consult and recommendation for 5 day inpatient too. I found ketamine does have(although the Drs. dont go over them) side effects that i was not willing to take. I found the Drs. acting as if this is a cure which it is not-which turned me off. I like the facts. I hope all goes well for you what ever your decision. Thanks Kathy D for your version of ketamine and i hope you recover from your fall. I also have heard that that hospital doesnt have a great reputation. momof4

Three full days now and she is VERY groggy but still not sleeping well. A little bit of anxiety about it not working and the doctor is going to give her some xanax. I told her to ask for something to help her sleep. Still praying for positive results. She achieved some pain relief with low dose infusions so hopefully this will have even better results.

my boyfriend is doing the ketamine treatments here in atlanta as an outpatient at the shepard center.. The way they are doing his is once a week for three weeks. He has already done two weeks and has felt not an ounce of relief or anything really from it other than tasting saline in his mouth all day every day..
Has anyone else heard of this once a week for 3 week ketamine infusion? He has a very bad case of RSD and I just don't understand why they are not doing a 3 or 5 day outpatient with him

Dear Tiffany -

Sorry, I hadn't seen this when I asked in the other thread the specific nature of the ketamine treatment he had gone through. I didn't realize that his treatment was still ongoing.

And no, it doesn't sound like any protocol I've ever heard of.

Mike

Hi All,

I don't want to bore all with my long story once again. But have done the 5day inpatient ketamine infusion with boosters 3x 's. And all the responses I have read are they same type of effects I also had. I did have a good experience and did get relieve from most of the RSD symtoms. As everyone has stated everyone is different and it effects all differently.

I do want to share one interesting thing. I posted 2 weeks ago I had got pneumonia and was treated with Prednisone and a antibiotic. Roll back 7 years and one of the meds. they gave me when I was first injuired was prednisone and it was the only medication I have taken that took all the inflamation and pain out of my arm. While I was on the prednisone for the 6 day taper while I had the pneumonia I had a 0 pain level, interesting. So yesterday I had my regular PM appt. and discussed it with him. He said that is intersting prednisone should not help with RSD. Tell me something I don't know....My point, I have been asking and questioning almost begging my doctors to do more investigating in regards to the pain in my arm. The reasons I have gotten not to do anymore is "the arm has been through so much, to many surgeries, your on very little pain meds. you got great functioning back", blah, blah.. But I feel if I can get rid of this pain, my RSD symtoms are low, yes I do have flares but I can see myself getting off all meds. which is important to me. So I finally got someone thinking again and maybe I will get the correct answers. Don't get me wrong I love my doctors but this is one point I just don't agree and it's very hard to find good qualified doctors who know RSD and can deal with everything else.

Good Luck to all

Gabbycakes

My PM at Cleveland Clinic would like to do ketamine once a week, for several weeks. Then, once a month boosters. I am under COBRA and my past employers insurance has approved it, but I would have to come up with $5,000 deductible, then 30% of the balance. I just cannot afford it.

So, Clev Clinic PMs are doing the once a week ketamine.