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

I am sorry I don't have a
lot of time right now but I want to thank everyone for taking the time to reply .
I am very thankful for your responses and to all of you

I will be back later for a more detailed reply.

What I do need and can't seem to find is:

Dr.S phone # !!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was half asleep when they called at 7:30 AM (3 hour time difference)and they are not on call display

Can someone provide me with it .
I googled him and the university but I could not break it down

Thanks in advance

GnP

Hi GnP,

Sorry, no number - just wanted to wish you luck!



all the best!

is this his info?
http://www.drexelmed.edu/Departments...5/Default.aspx

Robert J. Schwartzman

Chair
Neurology
New College Building
245 N. 15th St
Philadelphia PA 19102
Phone: 215-762-7090
Fax: 215-762-3161
Email: robert.schwartzman@drexelmed.edu

It must be -
Publications listed -
111. Dey DD, Schwartzman RJ. Incidence of disabling neurological complications in patients with CRPS of over ten years duration. (submitted to Journal of Pain and Symptom Management 2004)

112. Goldberg ME, Domsky R, MD, Scaringe D, Hirsh R, Dotson J, Sharaf I, Schwartzman RJ. Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome. Submitted to Pain Physician 2004.

113. Kiefer RT, Rohr P, Ploppa A, Nohe B, Dieterich HJ, Grothusen J, Altemeyer KH, Schwartzman RJ. Effects of subanesthetic S(+)-ketamine infusions on pain relief and thermo- and mechanosensory thresholds in severe complex regional pain syndrome (CRPS) refractory to conventional therapy. Submitted to Journal of Pain and Symptom Management 2004.

good n plenty, I can tell you will never meet a nicer more caring and compassionate Doctor. Ketamine has helped me and helps others.. I think that is why the wait is so long. There are so many peoople having repeat boosters. Please read my other posts. also type in Shannon Stocker. she has had the full treatment to. Coma in Mexico.. I went to Germany. Don t worry about the coma yet. Very few go 40 something to date.The ketamine had always helped me but does not help everyone. But what else can we try.
I stay at the Hampton inn on Race street. Rate is 89.00 for those there for infusions. Tell them your going to Drexel University Hospital/Hahnemann hospital and you can get that rate. Hampton inn race street, City Center. Good luck to you. I hope this is somethign that will help you. But again it does not work for everyone. Its a long haul. Goood luck.It is not a cure, it is to lower your pain level so you can function. Only a few have had a total cure. But the numbers of reduced pain are very good.They cant tell you the dose as each person is truly different and not everyone gets the same dose during infusions. It depends on your RSD and how your body responds. Wishing you the very best, CZ
that is his number above. go to Drexel University College of Medicine, Faculty and staff.

Best of Luck (if you have gone for it!!)

Fingers crossed it works for you!

In reply to earlier --> The UK doesn't do it and the UK doesn't fund ketamine comas. HOWEVER going to beg PM dr about seeing if he can put a ketamine pump in. Yeh, I know they don't exist... doesn't mean I can't be the monkey!!

Keeping everything crossed for you!

Love ya

Froggsy xxxxxxxxxxxxx

Hello all

I am sorry I didn't get back sooner but I had guests this weekend and that was all that I could do. I know you of all people understand

Again thanks for all your care and responses!!!!!!!

I managed to buy a little time with Dr S and my decision

I wanted to talk with my pain management doctor here.
For a number of reasons I have not talked to or seen to him in several months which is unusual.
I have just been seeing my neurologist .
For all I know he(my PM doc) could be doing ketamine treatments himself by now as he is always on the cutting edge ,so before I go all the way to Philly I better check close to home first.
So , I will have a better handle on things tomorrow (I think).
If he is not doing them then it is off to Philly I go.
do not pass go.
I have all the paperwork and I am ready.

Thanks for all your kindness.
I will let everyone know what happens .If I go ,If I get accepted etc etc.

The only thing stopping me(Ok a little indecision here) is that when I did the oral ketamine experiment , I did not have a good experience.
In fact I Had the 80 mg IV booster in a day hospital setting followed by 12 days of 20 mgs a day of oral ketamine.I felt great during the process in terms of less burning except that I was completely out of it mentally .Who needs a brain .I mean,they are highly over rated .However,my feet started burning right after that.I mean RIGHT AFTER THAT!!!!! Prior to that I was only upper body!

things that make you go mmmmmmmmmmmmmmmmmm!!!!!!!!!!!

so you see my reason for indecisiveness

I have GnP of reasons

GnP