[tiffanyc]

Hey guys, I do not post here much but I read almost everything. My boyfreind developed RSD as a result of a broken foot over 2 years ago. He has WC (PITA) but they have recently moved his standings to "catastrophic" Our lawyers are trying to get them to let him get ketamine infusions and they gave him a list of the places in the US they suggest and they ranked what they felt was best to worst to them and want us to research and see which one..The thing is the main ones I hear you all talking about are not on here so please can anyone tell me anything good about these places???
These are ranked in the order or Geoff's case worker's(our lawyer appointed) opinon

1. RIC Center for pain Management Chicago Illinois
2. Cleveland Pain Clinic Cleveland Ohio
3.Mayo Clinic in Jacksonville FLorida
4.Emory Center for Pain Management Atlanta georgia (we live in atlanta)
5. Doley's Pain Clinic in Burmingham Alabama

I thank you all in advance for the feedback you provide good or bad and thank you all for teaching me so much about this disease through this board and helping me to cope with living with my boyfriend like this and our 2 small children......

[daniella]

Hi. I have been to Cleveland Clinic and saw Dr Stanton Hicks and another pain doctor there. I also did part of the day patient program. I know a girl who saw Dr S and got a SCS implant after many other treatments and hospitals with him and is doing a lot better. I did not end up doing treatment with Dr S. I only got 1 option as it seems they start most people with the tunneled epidural catheter who goes there. I felt rushed as well. After I saw some other specialists for treatment. My actual best pain doctor was calling a teaching hospital in my area the anesteolgist dept. He listened,explained,and gave options. The other places I am not sure of. Has he seen anyone yet for treatment? Could you start with someone in your hometown? It is hard to find a good rsd so often times travel is needed but if one can find a doctor near their home that is even better for continued care.

[tiffanyc]

he has a SCS and has had it over 18 months now..there are no specialists in our area and he has been to every doctor possible around us and they have now suggested sending him to one of these clinics for the ketamine infusions since workers comp has changed his status to catastrophic.
It seems to me like this may be the last thing the doctors can tell him to try cause nothing else has worked and he is just in so much pain all the time plus we have 2 young children that he is missing out on a lot cause he is always sleeping so he doesn't have to endure the pain from being awake...

[daniella]

Hi I could be wrong but I don't think Mayo or Cleveland Clinic does ketamine. If that is what he would like to try in terms of treatment I would call to see. For ketamine Dr Shwartzman or Dr Kirpatrick and there are a few others the names of which I can't recall but have been mentioned here. As for it being the last thing to try I disagree there is more options so try to hold to hope. I think a starting point is to call the places you have been suggested and explain the situation and what you are looking for. You can even ask if they do ketamine. You sound like a very caring girl friend and I hope your boy friend gets to a better place soon

[tiffanyc]

yes the two names you mentioned are the dr's i read about all the time on here and I was very confused why neither of them were on our list. I am going to call Geoff's case manager on monday and ask her to look into those two...Like I told him I can't imagine one of those doctors not being on the list becuase it seems to me like those are the most well known dr's in the US for this...But then i also remember that most people have no idea what RSD is and I know more than any average person and maybe she(case manager) just googled clinics and really doesn't know what she is talking about...
This is why i asked y'alls opinion..Like I told geoff I would take anyone on here's opinion before I would listen to any of his dr's cause really most of the dr's we have came into contact with (remeber he is on WC) know way less about RSD than I do....

[tiffanyc]

anyone else have any input???
His case worker is pushing us to make a decision..
I just told her I want her to look into Kirkpatrick before we make a decision but she is really trying to push us towards the place in Chicago

[Kakimbo]

Hi tiffanyc.

I am scheduled for a SCS next month, and am wondering how your BF feels about it. I've heard many negative things about it, and I really need personal experiences before I can decide for myself. It seems like a really drastic procedure. I mean, they require a psych eval. before doing the trial. Any info would be really appreciated!

Thanks, Kim

[daniella]

Hi again. The reason they may be pushing a hospital rather then a private clinic is because Dr K does not take insurance for ex and I am thinking the WC may have an issue around that. Again I don't know much about WC but a thought that came to mind. Who did is scs and could that doctor give suggestions on what the next step is? Did you call the hospitals listed pain clinic and ask some ?'s that is what I would do.
Kim I don't have the scs though I was suggested at one time but was put on hold. Anyhow I know everyone is different in there response. I have read some people not having good results and then some do benefit. It is so hard to know as we all respond so different. Have you had other treatments like blocks?The psych evaluation I was told was to see how you can accept having an object implanted in you. I also felt it may have to do with how you cope with the condition and the possible outcome of the procedure. Of course a lot is for the insurance I would think.

[daylilyfan]

I just got back from my PM a couple days ago. She works at a satellite office of the Cleveland Clinic. Her office is at a hospital in a suburb of Cleveland, on the upper east side. ( I like not having to go downtown to the main campus )

She does ketamine infusions there at her office. She told me I would come once a week, the infusion would take 6 hours, and continue for 6 to 8 weeks.

I doubt my insurance will cover it, but her office is checking in to it.

She works closely with Dr. Stanton-Hicks, so I would think that the main campus would do the infusions also.