Hi all

I haven't been here in ages. Life has been rather complicated.
Hope all are doing OK.

I just got a call from Schwartzmann's office and it's been 1 1/2 years .The wait is over .I wonder how that could have slipped my mind
They called today and I have to decide by Thursday if I want to go to Philadelphia.
I don't even warrant a call from a nurse so I didn't get too much technical information which makes the decision more difficult .What I did find out was:
It is a 2 year wait for conscious coma ketamine in Pa.
After the assessment the doc will either tell me to go to Germany right away and arrange for travel plans( how convenient ) or I can wait 2 more years for him to do it to me
Or option 3- he does a series of daily treatments and boosters .
The women on the phone could not give me the exact amount of ketamine in the IV dosage or the amount of time I would have to stay in Philly or the success rate of said treatment .
All in all I have so much info(ya right) at my disposal to help decide whether to make this long expensive , ,arduous trip from California.

Has anyone seen the good doctor lately and could add to this measly bit of info???????

Thanks so much

GnP

Hi,
I'm very interested in the responses you get since I have an appointment with him next year. I'm also in CA & know what you mean about travel arrangements, etc. I hope you can find out more info. Since my appt. is so far out I haven't done any research on him lately. What is the success rate? What does your current doc say about it? Will the travel be really hard on you? At least, it's summer so the weather should be good there now, not like in the winter with snow. Please let me know what you find out.
Best wishes,
Linmarie

Hey GnP.

Hope you are ok. Sounds like they are useless as any other clinic when it comes to sharing information with patients about what they are going to do!

Well, I guess I would decide on whether to have the treatment done by looking at my quality of life. Since you went on his waiting list do you think your quality of life has improved? are you managing ok with how you are now? If you feel it is a no brainer (willing to try anything at all because you have no quality of life etc etc etc) then it is worth the money.

I have been on low dose oral ketamine tds/qds (25mg 3 - 4 times a day, everyday) for 18 months or so now and I have found that is has helped reduce my pain levels a small amount. I find that the ketamine has, until recently, given me my life back. It allowed me to go to university and to try to get on with my life.

Good luck with whichever way you decide!

Love

Froggsy xxxxxxxxxxx

Thanks for your responses thus far.

I don't know if it is as I have been out of the loop but I have not been hearing any miraculous new news about ketamine- no breakfast of champion promises as it was said to be several years ago.

I think the telling question was/is when I asked 'What is your success rate"
the best she mumbled after some gobbledy gook was that it is different for every person.
This is somewhat in line with what eventually came out of the first round of treatments.
We were hearing of these amazing success stories .But how do you gage success?
Of the ones that it worked on a good percentage were cured for up to 3 years but that was on the ones that it worked on.
Many people had horrific side effects to the treatment itself .Many people it didn't work on at all.
Some of those stories were told on the other forum.
I think it was someone from Australia who posted frequently on this forum who had a 7 month remission and then ...back to status quo and with a pregnancy on board to boot.

I myself did an oral ketamine protocol and got nothing out of it but a pretty funky "trip" for 12 days.

Now I may sound negative to some of you but I am not .I just don't have enough information right now to warrant a trip and the 2 day notification doesn't help much.
I am going to call and talk to their nurse tomorrow(if they let me) - talk to my family tonight - try to do some more research and hope to get some more answers here.

I am doing OK.
Thankfully I had a lot of blocks on both my lower extremities and upper extremities when the disease took hold in- first my hands and then my feet .
I spend more time in the freezer than on the stove these days ( my terminology ) but that can always change.I have periodic spells(daily) of very nice sunburns.
Both my hands are pointed outward but other than that my "mobility " not been too severely affected .I can fake "normal" whatevee that may be pretty well
I think that is due to both the blocks and the fact that I have been an athlete all my life and I continue to work out no matter how badly I feel.I am convinced that if I keep my limbs oxygenated I will be OK longer and so far it has worked .I am going on 8 years with this with a 2 year remission at the beginning .
I also have TOS,cubitel tunnel ,shoulder impingement all bilaterally ..and a few to several other things.
Do I feel like crap all the time?
Of course I do .
Do I want to crawl out of my body sometimes as it is driving me crazy?
you bet.
Do I think Schwartzmann is the answer to some of these things ?
No clue .

so in this limited amount of time I thank Frogga and Linmarie for their time and care and if anyone else has any info it would greatly be appreciated

take care
GnP

Hi GnP-
I went thru the 5 day inpatient ketamine tx with Dr. Richman at the Hospital for Special Surgery in Manhatten- There was not a long wait and he is using Dr Schwartzmans protocol ...The only thing is I don't think he accepts all RSDers- He is very nice and the hospital care was excellent there. I would call his office and tell them the drugs you are on and how severe your RSD is- Maybe he would let you know if he would consider treating you

I think I had around 50mg of ketamine at the hite of my trip- It wasnt bad for me- and I am not one who likes to lose control. Unfortunately it didnt help me...If you want any further information feel free to email me at Spudsailor@aol.com

Debbie

Hi GnP,

How great to hear from you! How are you doing in general?
I really just wanted to say Hi!

Well, there's lots on the net about ketamine and the different procedures, from low-level or high-level awake infusion, to the coma treatment in Mexico, and you're a Very Bright Girl, so I know you'll find them all.

As a general impression from the feedback we have had on this and the previous forum (and the net generally) I think the coma treatment sounds very dangerous and I personally wouldn't go near it. But that's me and I'm a chicken.

The awake infusions over days, however, sound as if they might give some relief for possibly months at a time (yes, it was Kate from Oz who had the early successes) - but then for some reason it seems to stop being effective. It sounds like it might give some relief for quite a while, though - if it suits you, some people can't handle it or don't respond to it.

I know you'll decide sensibly what's best for you - but how bizarre of them to give you so little notice! Anyway, don't be a stranger, it's so good to hear from you again,

all the best

GnP,
Beth on our TOS forum, I think she may be here also; have a lot of information of the treatment options, outcomes and travel to Phila,

If you really need quality of life it is worth his assistatnce. What ever his reccomendation. There are several travel agencys that assist with flight too.

My daughter did not have his lidocain IV treatment or Ketimine,To tell you the truth I am so gald she was not sever enough to consider Germany.
Good luck
Dianne

Hi GoodNPlenty,
You seem to be in the same exact boot I am in now. I am on the waiting list for Dr. Schwartzman since Nov 06...when they told me they would call me and I would be in there in Jan 07 sometime. Well, around Jan 15th when I had not heard from them I called them to see my status and they had no idea who I was. I was furious and told them it was inhumane of them to tell me I had to wait two months for it and then come to find out now it will take anywhere from 6 -12 months to wait for the in-hospital Ketamine IV. I had the Lidocaine IV in June 06 and it was really rough for me. It did bring the pain down from a 10+/10 to an 8/10 so I would take any decrease at any time even now. So, I wait until then and pray it works for me. I guess it is very hard for them to tell each person it does work and then when it doesn't the patient would be devastated. I think it better they give us the scoop up front and that is one thing I really like about Dr. Schwartzman and his staff. They will lay it on the line and let you know either way what can and will happen so it prepared you mentally for it to go either way. With RSD Dr. S. knows how mentally broken we are as well as our bodies and he is genuinely concerned with each of his patients. I do have a next appt with him in August and probably will have my Ketamine done for a xmas present. Pretty crazy life we lead. I am thankful to see others going through what I go through. We are really survivors with all this mess that is for sure.

Dear Debbiehub,
I was at the Hospital for Special Services in Manhatten in Feb 2007 for a really specified MRI and they were really great there but I didn't realize they have the Ketamine there too.

I feel bad for those having to come into the area from California. I live 13 NE of Philly and would happy to look into hotels or anything anyone would need for this area or if anyone has any questions about the area that I could help out. Also, the hospital should be able to tell you what hotels are in the area. Just be careful around Hahneman Hospital because it is not the safest of neighborhoods. It is a shame there are no doctors in California that would do the Ketamine for each of you. From what I hear Dr. Schwartzman is the best! I love him because he has that dry sense of humor which I have too and he always makes me laugh. His staff is great too. Well, good luck everyone and let me know if I can help in any way. My private email is kdunn9951@aol.com...just write something in the subject line about RSD and that way I won't delete it thinking it is junk mail.
Thanks and best of luck to all,
kathy d

I just wanted to say hi and to tell you about the experience of one of the guys in our old RSD group.

Randy went down to see Dr. S for a week and all he got out of it was a week stay in a nice motel and an xray of where his RSD was in him. He had a teeshirt made with it. I can't think right off hand what they call the test but it shows the RSD in red and the rest I believe in black, kind of like an xray. He didn't have the ketamine treatments but he saw no signs of improvement with what they did for him.

I do believe though like the others. It depends on where you are at this time with the RSD. Mine is pretty much in remission. I do have my right arm going tonight from where I had 12 allergy shots done in it today. I am hoping it will calm down soon.

Like you, I have the TOS, carpal, cubital, radial, ulner and also triggerpoint in both arms and hand so I have more going on then just the RSD. I am doing very good with my RSD compared to so many others at this point. It's all of the other crap that's getting me down, mainly the IC.

Back to you though, it's a decision you have to make based on where you are right now with the RSD. What I don't understand with the ketamine IV's under a coma, why would a person go through them if they are only lasting for months. I guess it's just me but it sounds drastic for such a small amount of time relief. I honestly believe like someone else said that if a person kept looking in their nearby areas they might find that right Dr. that could do as much for you. This is just my opinion of course but I think that Drs. are becoming a bit more aware of the RSD but it's just that there are very few that want to tackle it since it's such a hard illness to get under control. Have you tried the University hospital's in your area? Sometimes they can do quite a bit for people. I had one good Dr. at the U of C and actually had a good pain Dr. until they brought in some idiot from Kansas that knew nothing about anything but Fibro.

I know I might here some heck from people about Dr. S and I'm not saying he doesn't help some people, but I think it's just that you have to be one of those people that the help he gives will work for you. That goes back to if you don't go, you don't know.

Glad to see you around and I do hope that you find that right decision. Also I would pray for it and ask God to help you make that decision. That works for me a lot of times.

Ada

Hi G&P,

I don't know if you were leaving for Philly today or just had to let them know by today - they can be rather dim about letting out-of-staters have adequate notice. One time after we got to Philly I called my house in IL to speak with my Mom who was watching my daughters, she told me Dr S's office had phoned that afternoon to remind me of my 7 a.m. appt the next morning. How they thought I wd make it on time if I hadn't yet left IL by 4 p.m. the previous day I'll never understand!

I had a really positive in-patient ketamine experience - wrote all about it on the Old BT site, of course it's lost forever. But I went with an attitude a lot like yours, very positive and hopeful. As the IV ketamine flowed I kept reminding myself to remain calm and remember I was there to get better, and I kept my mind on my family. Doing this, I was able to keep from ever getting scared. Also, whenever I started to have any "hallucinogenic" trips,
I would just stay calm and detached, and do something like follow a butterfly out of that "scene" back to reality, or something closer to it. In other words, I tried to stay calm, and to keep some control, but passively, I didn't fight the drug, nor did I surrender to it and fly to Neverland.

The nurses said I had the best ketamine treatment of any they had seen at Hahnemann. By day 3 I was pretty lucid all the time, and had zero pain. When I left the pain was abt a 3, but because I have permanent nerve damage and TOS I knew I would not be pain free. The pain levels hovered between 3-4 for a good 5 months, which was over Oct-Feb, and the best winter I'd had to that point since injury, by far! That was with several flights back to Philly for 2 or 3 day out-patient ketamine treatments, at lower doses, done at Dr S's office. These are 4 hrs ea.

The last treatment was spaced out the farthest, with 3 months between, in May. I lost a LOT of ground in the space of 3 months. SOme of this is due to a great deal of stress owing to an ins. appeal I lost, over their denying payment for the ketamine treatment!! I think that the traveling back and forth also takes away some of the benefit - you are suppposed to relax after each treatment and not do much for 48 hours, while I was rushing through terminals catching flights home!

But I would do it again, because it gave me more relief than anything else has done, and some sx stayed away 12 months or longer. The acid-eating pain in the bone still has no returned. The burning pain has never returned to my upper back. Don't get the sporadic electric jolts or "sun spots" either, and the myoclonic jerks scaled way back. In fact when the sx returned, they returned to the original limb only for a long time, and much reduced.

So I would definitely say try it. But I think how you approach it matters a great deal on outcome.

I am told the coma treatment wd work for me since I had such a good initial response to the IV. But I am not ready for this yet, because I have 2 girls at home, and I need to be there for them and with them, at least with a sound mind, whatever shape this body is in, and the coma procedure just carries too high of a risk factor for me at this time.

I'm hoping something else comes along before I have to seriously consider it!!

Best wishes,
beth