Please don't misunderstand what I am saying about clinical trials. I'm not making a criticism of this centre. I'm merely looking out for your safety and because I know a lot about clinical research rules and practice, I'm saying you need to check carefully before you get involved in any trial to ensure the people carrying out the research are properly regulated for your own safety. Even with a drug that shows promise, things can go wrong for people.

It is very important for your safety that if you decide to take part in a clinical trial that you are safe. Anyone conducting medical research and drug trials has to abide by comprehensive regulatory and ethical rules. This is why it is rare for a small commercial centre to run a trial.

I suspect that one of the doctors they have has an attending position at Beth Israel in NYC and that centre is involved in an IvIg clinical trial. It you are keen to look at being involved in such a trial this may be a route in, alternatively, contacting the named researcher at Beth Israel may be the fastest way and as I said you can check your eligibility online before you do anything else.

This centre has a rather outdated description of CRPS on their website which is one of the things that alerted me to raise a concern. I'm not saying don't go, just be careful and evaluate it objectively to keep yourself safe.

What do you think of Schwartzman's team of drs at Drexel? Ive been on a 3-4yr waiting list and I finally go in June. However last night I was having second thoughts and thinking about canceling the appt. Which I don't know would be very smart on my behalf. But im having "primary" issues with my first diagnoses and im thinking about going back to see a surgeon about scar tissue revision, not that it would help my RSD or many other issues. Its just all very confusing and I hate weeding threw all the problems.

Well, I called the CRPS Institute in Manhattan and a recording said that it was called the Manhattan Spine and Pain Center. Then I dialed the extension I was supposed to and a woman answered. She started explaining the CRPS procedure to me. First I would have to get all my medical records and give them to the drs there so they can confirm I have CRPS. Then if they think I'm a candidate, I go there and see the drs there as well as a psychologist. I was told that they are out of network and I would have to pay $700 up front. The psychologist's fee was separate. I then told the woman that I couldn't afford that and to just forget about it. What a bummer. Looks like you were right gotnverve and neurochic. Thanks for trying look out for me. I wish you were wrong only because I feel like this was my last hope, but you were right. I'm going to drown my sorrows in some chocolate and go to bed. I'm very depressed right now.

I'm sorry it turned out as it did. It gives me no joy to find that my suspicions were close to the mark. The place looks like a commercial clinic that has been set up to cash in on delivering expensive treatments for CRPS and that must include plenty of SCS placements given the experience and interests of the people staffing it. The truth is places like these just aren't set up to run or participate in clinical trials - they want to siphon off the commercially viable patients who will make them lots of money. Too many prey on the desperate and those who will pay anything to go and see yet someone else who might give them the new hope that they haven't found so far.

I don't know enough about what you were specifically looking for from this clinic to try and help with any other suggestions or ideas. I don't know which aspect of your CRPS you are hoping to try and find an improvement for. If you are determined you want to be involved in a clinical trial then use the WHO, FDA and NINDS websites to look for trials near you but check the inclusion and exclusion criteria carefully.

I know a knock back and the extinguishing of hope is desperately depressing but at least you are actually in no worse a position physically and medically than you were before you called them. If you can explain specifically what you aspects of your CRPS you would hope to improve perhaps there are other things people could recommend.

To Tos8

I am guessing you were asking me about my view of the team that used to be headed up by Dr Schwartzman at Drexel? All I can say because I have no personal experience is that at least that team has a longstanding genuine reputation for treating and researching CRPS. The head physician has retired and that can, of course, radically change the quality, effectiveness and make up of the clinic over time but it certainly seems to continue to have a decent reputation.

This all means they will be used to seeing different presentations of CRPS, they are based in a University teaching hospital type setting so they will be very used to handling clinical patient management and the endless demands of research work. There are some people on here who have expressed unhappiness with their care there but you need to evaluate that for yourself when you actually research it properly and/or meet the medical staff.

If you have been on the waiting list for 3/4 years, my personal view is that it would be madness not to use the appointment. You have nothing to lose and potentially everything to gain. There is no reason why you can't explain all of your complex wider issues and ask for their opinion in that context. Make the most of the chance to speak to their more experienced clinicians.

Be clear about why you are going there though and what you want from them. I'm sure that has changed since you went on the waiting list 3/4 years ago. Write it down in notes so you are clear and prepared. Have questions from your online research ready to ask. Make the most of the appointment and use it to objectively decide whether they have anything they can offer you which may help. You are not going to get a cure but they may have something that could help your symptom relief and hence your quality of life. Be realistic and weigh up remembering medical science still doesn't know what causes CRPS and you won't get a cure.

I'm real sorry about this Renee!! By the way.. I didn't see your comment above about not being brave - You certainly are brave!! Just because you and I choose different things doesn't make either of us braver than the other.

Never give up.. something might be right around the corner for you.
Tessa

Renee, I'm sorry that this institute didn't work out for you. It's always horrible to have hopes dashed, but when those hopes are to find some help for something as crazily cruel as CRPS the let-down is enormous. Try not to let it get you down for too long, there's research going on and good people looking at this. Not as many as we might want, but there is progress being made. Slowly.

If nothing else, you have publicly highlighted something that might otherwise have caught more folk out. It's important that crocks like that place are talked about and exposed. You just might have saved someone on this forum from spending a lot of money out for nothing, and even more disappointment than you feel. That's a good thing :)

I'm hopefully on an IVig trial, not starting for a few months yet though. It's definitely worth trying for I think, although you do have to be careful where you sign up. The world clinical research trial website is very informative, and you can be sure that wherever you go is a valid and professional unit.

Take care of yourself, and as others have said - don't give up. There's always got to be hope ;)

Bram.

Sorry it didn't work out! It sucks thinking you might find something or some place to help, only to have the dream stomped on :(

Hi Renee
 

This world unfortunate is full of people try to get the most they can out of the insurances,recommending unnecessary treatments or the most expensive one,at least you took precautions and did not run into it without making sure everything was legit,sorry did not work,but soon there will be something that make your condition improve,I really hope that,here in Los Angeles area there is a dr called dr Joshua prager he works in ucla medical center also part of the board selected by the state of California to regulate how crps/rsd patients medical treatment should be supervise ,approaches and how wc, and ssi should validate the fact,this patients are or will be permanent disable without a radical and aggresive treatments,so far in my case wc,they ucla medical don't take those cases unless everything is prior authorized by the insurance only like that,my insurance wc for this case doesn't belong to the network,I watched so many of his videos and debates with other doctors from other states in you tube and wishes he could see me,but no luck ,I recently was treated from a dr who was covering my pm md and he seen more updated with the treatments,but because I'm still waiting for a final report for an iMe I won't be able to switch des yet,his name Dr Carl Hess in Fullerton ,ca.also sound so advance and knowledge about the condition,I which with no doubt to change pm dr,but I have to wait,he is part of my ins network,he approaches treatment and different way and understand if you first injury is in my case right foot and ankle but crps develop because of that,scs generator gave me so much pain in my non crps leg he refers the condition as industrial,because of this you got that,is the first time in almost three years a dr instead of me pointing that fact he mentioned without me getting angry and keep telling I'm not ok because of the pain on my left side where the old battery packet was,felt relief when he mentioned and also created a plan for the upcoming treatment,unfortunately gallbladder issues came along the way,he told me to wait a little longer because gallbladder will create flare ups and I need to avoid that so soon will se him as long as my original md don't comeback sorry to said this,but I hope he retire and I can switch md without waiting for the iMe dr report,keep the faith,soon you will find the right dr,treatment and will not experience any more disappointment,non of us deserve that,we already have enough and God will lead us to the right place soon,we all hope that my friend,god bless you all :grouphug: and talk to you soon,your dearest friend eev or Jesika don't allow any negative though erase those smiles we are here fitting and as long as we keep fitting,no one will erase that joy of non giving up so smile,we have a new day to live on with pain,but still alive :winky:

First of all Renee im sorry it didn't turn out to be what you hoped for it to be. But you do have other options, you can call the GW hospital and call Dr Chin, I know several RSD patients have gone to her and have really liked her and the wait list isn't long. Or call Drexel in PA and get on the waiting list!

Neurochic, thankfully im used to university hospitals so I know how to handle all the "crap" that comes along with it, and theres always usually crap.