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

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

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

Pat , thanks for the warm greetings and YES I am a chicken too!!!
I am not in for that coma stuff but I don't think I have been deteriorating to such an extent that I would warrant that kind a treatment .Then again I could just be in denial If it were the answer I would have to consider it, but I sincerely don't think I am there yet.

I don't have a control group for comparison so I think I am am progressing at a nice slow to moderate pace.I am in all 4 extremities now but not as severe as it could be .How is that for denial.I am good.

Froogga with all you have going on thank you for writing to me all together .You are truly an inspiration.My problems seem small in comparison .You are truly a survivor with the spirit of a warrior princess.Don't let them get you down .You are destined for greatness !!!!!!!!!
Now if there ever was a candidate for ketamine treatment it is you.I know you have been taking it orally and frankly I am amazed .I took 20 mg/day for 12 days and I was not on /of this earth .I guess as with any drug you can get used to it.
Are they offering anything of the coma variety in England ?
Can you get to Germany w/expenses covered with the British med system ?
Perhaps you can write to them in Germany and tell them of the severity of your case? Ask if they will do a freebee????.You never get a yes if you don't ask. If you need any help please write me a PM .i would be happy to draft a letter with/for you . You DESERVE it!!!!!!! If you can get better you deserve that chance!

Thanks Deb for your experience .I am sorry it didn't work. and Dimarie
I am so sorry about your daughter.this TOS is a monster. Thanks for the tip on Beth .I looked over on TOS but did not see a post from her of late

I have decided that I am going to go to the appointment .
I have waited all this time after all
I came to this decision as I have nothing to lose and EVERYTHING to gain.
I have not been getting any better .In fact as I mentioned I have only been getting worse .It may be slowly but it is worse all the same.
The least I can gain from this is another wasted doctors appointment .
I have been there before .I can get over that very quickly .
The most I can get out of it is feeling a whole lot better.

I like those odds.I don't want to look back and say what if I had gone
and ........... I could be thinking that for the rest of my life and that I can't get over very quickly at all.

I have a great person going with me who loves me unconditionally and supports my decision and what more could a girl want

will keep you all posted

GnP

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