(RSD) 5 day Ketamin infusion with Dr. Schwartzman
 

Hi my name is Shanna and I am 22 years old. I have suffered with RSD for 13 years since I was nine years old. I have had many different treatments most unsuccessful and some only giving me breif relief from the pain.

Just recently I have been approved for the 5 day inpatient ketamine infusion which Dr. Schwartzman in Philedelphia will be administering. I will be recieving this treatment starting December 13th 2010 in Philedelphia.

I haven't had any treatment in over 3 years and although I am excited to have the chance to try ketamine I am also very nervous and scared and not quite sure what to expect while I am there. It also makes me even more nervous that no one can stay with me especially because my home is over 1 hour and a half away and I will only have a few visitors during the week if any. This is the first treatment where I will be by myself in the hospital.

My main question is has anybody gotten the 5 day inpatient ketamine treatment in Philly with Dr. Schwartzman, and how did it all go over for them? Also I am curious on how the ketamine is going to make me feel during the treatment and even how i will feel after I am discharged, if anybody could please explain their experience I am sure it will bring me some comfort.

Any information is appreciated, the date draws nearer for my treatment and although I have high hopes of getting some relief I am nervous non the less. Thankyou to anyone that can possibly answer my questions.

Hi Shanna,

I will be meeting Dr. S on Wednesday for my outpatient boosters. If you read my thread about my 5 day at HSS, it may help some tho of course it is a different Dr and hospital.

Regarding what to expect after the treatment, I will message you later tonight and tell you how I felt immediately after and for the first few days. Real quick, I can tell you, after 3 days I felt pretty amazing. :)

I promise to send you that message tonight because I know how nervous you must be and those were questions I had too.
:hug:
Dawn

Dear Shanna S,
Hello and glad to hear you may be getting some much needed pain relief. I had the 5 day ketamine inpatient treatment on Sept 20th (which turned into 7 days)at Hahnemann. I don't want to be a downer but I had the worst experience and want to warn everyone about that hospital. I felt very unconscious during that time and came in and out of consciousness at different times. I was very paranoid and thought the nurses were going to kill me so I tried to be as nice to them as possible, had hallucinations, and pulled ivs out of my arms three times. It was a mess but the worst part was after waiting over 3 1/2 years for the treatment and going to court three times one of the nurses there in the ICU took me out of bed on day 6 and put me on the commode and left the room. Well, when you BP is 85/49 I hit the floor and hurt my neck and back real bad. I still have lots of pain from it so don't let them get you out of bed at all!! I had a fentanyl patch and after 24 hours they took it off (without weaning me off them) so I had severe fentanyl withdraw and had bowel and vomitting problems and lost 12 pounds in 2 weeks, was in the ER four times, doctor's offices four times, and don't remember the first week I was home from the hospital. It was a nightmare. The ketamine was frightening and I wish someone had told me how I was going to feel BEFORE I had it done. Once you get hurt when you have the ketamine done, the pain returns 1,000 times worse than before. I am still really bedridden waiting for help from an aid and am so weak I can barely get out of bed. It has been a nightmare and I know the treatment was working before the fall so it has been devastating for me and my family (who can barely handle the rsd)!! Dr. S said there is nothing he can do for me and wanted me to come back and do the 5day infusion again and there is no way I will ever go back there again. I am tooo traumatized to do so.

I know Dawn had a great outcome with it a few weeks ago and I am soooo happy for her. I was also by myself (as I am always because I am single) almost all of the time. I did not care for the nursing staff at all...there was maybe one or two nurses that were nice but the others were mean to me and to my family. One thing is you are supposed to sleep as much as possible to help the ketamine work and none of us knew that and no caffeine which we did not know. There were many things we were not told ahead of time and I researched this treatment for over 4 years!!!

I wish you the best of luck but know what may not have worked for one of us will work for others so get it and be positive and relax so the meds can work. Let us know how you make out. Also, the ketamine makes you very weak too. I think they should put patients in a regular room for a few days to get them back to the best physical and mental shape they can BEFORE they send them home. The worse part is I don't think no one told Dr. S because he was silent when he called me to see how I was doing and I told him they let me fall. I had my first booster Oct 21st (nightmare again) and he said when I fell it ruined my treatment and also told me he has nothing to help me right now and told me to go back on the fentanyl!!!! Never heard from him again. I guess I am not one of his star patients since it did not work for me. So, I lost alot of respect for him and especially the hospital and his staff over all this mess. I have my "next" appt with him in April and boy are we going to have alot to talk about then haha. Best of luck to you as you continue with your treatment.
Take care,
kathy d

I have not had this treatment but wanted to wish you luck and also welcome you to the boards. I hope you find relief through this treatment.

The leader of the RI RSD Foundation just returned from his 2nd 5 day ICU inpatient treatment at Hahnemann. Happily, he did really well while there and is planning to fly back this weekend for his first of a number of 2 day boosters.

There are great and not so great stories about Hahnemann.

The best of luck to you. Sandy

question about 5 day inpatient ketamine
 

Dawn,
Can you tell me about the 5 day infusion? Do you remember when you started to feel pain relief and how long the relief lasted? My dd has RSD and is going to undergo this treatment.

Hi Betsy,

I'm not sure if you're dd is going inpatient or out. I did my 5 day inpatient in NY with another doctor and do my outpatient treatments with Dr. Shwartzman.

Honestly, everyone is different. I did feel some relief after about the 3rd day in the hospital but you tend to feel more significant relief as time goes by a bit more. I had my 5 day on November 1-5 2010 and have now had 3 of the 2 day booster infusions and I have felt improvement with each one.

After my 5 day alone, my drop in needed pain meds was dramatic. For the first time in years my pain actually felt manageable and I had hope again and looked forward to getting out of bed again. I went from being on every narcotic and opiate possible to now being on none. I do still take tramadol because we all have bad days but that's all I ever really need.

As for the booster infusions, they're done because most of the top RSD doctors do believe at this point that the dose of ketamine is not as important as the repeated treatments of it. Basically, the nervous system needs reminders every once in awhile so it behaves.

I really cannot recommend ketamine highly enough to people as long as their doctors feel they are good candidates and they're reputable doctors. That said. it is important to keep in mind that unfortunatelyl it doesn't work for everyone but when it does, it really is wonderful. But do realize, it isn't a cure and still is a daily struggle and will be for life, it just makes it so much easier to deal with and gives you such a better quality of life if you can get it.

Good luck and feel free to ask away with any questions.

Dawn

My daughter is 30 hrs into a 5 day inpatient ICU treatment. No real pain changes yet but she is definitely getting foggier and more out of it. She has had ketamine several times before but only outpatient for 4 hrs/3 days a week. I am just wondering what to expect in the next few days.




[I'm not sure if you're dd is going inpatient or out. I did my 5 day inpatient in NY with another doctor and do my outpatient treatments with Dr. Shwartzman.

Honestly, everyone is different. I did feel some relief after about the 3rd day in the hospital but you tend to feel more significant relief as time goes by a bit more. I had my 5 day on November 1-5 2010 and have now had 3 of the 2 day booster infusions and I have felt improvement with each one.

After my 5 day alone, my drop in needed pain meds was dramatic. For the first time in years my pain actually felt manageable and I had hope again and looked forward to getting out of bed again. I went from being on every narcotic and opiate possible to now being on none. I do still take tramadol because we all have bad days but that's all I ever really need.

As for the booster infusions, they're done because most of the top RSD doctors do believe at this point that the dose of ketamine is not as important as the repeated treatments of it. Basically, the nervous system needs reminders every once in awhile so it behaves.

I really cannot recommend ketamine highly enough to people as long as their doctors feel they are good candidates and they're reputable doctors. That said. it is important to keep in mind that unfortunatelyl it doesn't work for everyone but when it does, it really is wonderful. But do realize, it isn't a cure and still is a daily struggle and will be for life, it just makes it so much easier to deal with and gives you such a better quality of life if you can get it.

Good luck and feel free to ask away with any questions.

Dawn[/QUOTE]

Where is she having the procedure done? Is her Doctor an anesthesiologist, neurologist or other?

Is she allowed to keep someone with her 24 hrs a day and do you know what dose of ketamine she is receiving? Are they pushing it up to see how much she can handle before they back her down? Having any lumbar or cervical nerve blocks or epidurals during the procedure?

Part if it in my experience can also depend on how much medication she was on before the procedure and how much they have to or want to wean her off of during it.

[/QUOTE]

Dr is from pain mgmt. I am not sure if she is the anesthesiologist or if there is someone else handling that. It is a teaching hospital so of course she has many different practices stopping in frequently.
She has someone with her when she wants but finds it better to go it alone most of the time (at GW they do not want anyone down there so that is what she is used to). She is tired most of the time as it is, being sleep deprieved and then all the ketamine (she gets 40mg).
No blocks have been mentioned and that is interesting. She has it in her right arm only. I had not thought about that since the stellate/brachial blocks in the past have been ineffective.
It does seem from all that I am reading that day 3 seems to be the day you see the most pain reduction. she is down to an 8 right now. I am hoping it will go much lower.
thanks for all of your help. it is great to talk to someone who has already been through this.

QUOTE=Reddawn600;739491]Where is she having the procedure done? Is her Doctor an anesthesiologist, neurologist or other?

Is she allowed to keep someone with her 24 hrs a day and do you know what dose of ketamine she is receiving? Are they pushing it up to see how much she can handle before they back her down? Having any lumbar or cervical nerve blocks or epidurals during the procedure?

Part if it in my experience can also depend on how much medication she was on before the procedure and how much they have to or want to wean her off of during it.

[/QUO

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

Good luck to all.
 

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.