Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-15-2009, 09:22 PM #11
RNcrps2 RNcrps2 is offline
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Originally Posted by SandyRI View Post
I am so sorry. Don't these people have any clue what they do to people when they screw up like that????

I have an appt in June 2009. But I am almost certainly cancelling it because I hope to be treated by Dr. Getson in Marlton, NJ in the next few months IF WC approves it. Now that I have found Getson, and like him so much, I doubt that I will see Dr. S. because of the $$. I had to pay $400 out of pocket for Getson's appt.

I wonder if something could be worked out - like I could give YOU my appt....I will PM you....I also have a list of ketamine docs that I got from Jim Broatch of the RSDSA, when my son gets home I'll have him help me scan it and send it to you.

XOXOX Sandy
Hi Sandy, I can't believe it. Today i researched and found Dr. Getson. I just have to get all of my reports and stuff to them and they will schedule me. I am so glad to hear you like him! I have a time line and some MRI's & EMG's but i don't have all the different Drs. eval notes. Did u need all of them? thanks for replying! I'm smiling! momof4
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Old 12-15-2009, 09:27 PM #12
RNcrps2 RNcrps2 is offline
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Originally Posted by AintSoBad View Post
Vanna has given that info, one post ahead of yours...

Hope you got it!

Hope he takes your insurance!!

Pete
Thanks Pete-i'm all out of order-lol. They said i have to pay first and get reimbursted by w/c.
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Old 12-15-2009, 09:40 PM #13
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Hi Sandy, I can't believe it. Today i researched and found Dr. Getson. I just have to get all of my reports and stuff to them and they will schedule me. I am so glad to hear you like him! I have a time line and some MRI's & EMG's but i don't have all the different Drs. eval notes. Did u need all of them? thanks for replying! I'm smiling! momof4
You will smile more when you meet him - he is awesome!! I mailed my information the first week of October and my appt with Getson was Dec 3rd. Because of Thanksgiving maybe it would have been sooner. So I waited 2 months. He sees new patients on Thurs.

I gathered reports from all of my most significant treating practictioners. To obtain your medical records you need to contact each facility and provide them with the appropriate authorization, usually via fax. And then within a week or so you should receive a packet with all of your reports which document each visit you had with your doc. I sent Getson a packet that included data from my personal care physician, my original pain mgmt guy, my Boston pain mgmt doc, my PT that I saw for a year, my rheumatology work-up, a neurologist I saw only once, and I think that's it. I made sure everything was really organized and labeled and in the right order by date.

I am currently just waiting to hear from my attorney on whether I can have the ketamine infusions that he recommended in his report...very nerve racking!!

Good luck and I will keep you in my prayers!! XXOXOXO Sandy
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Old 12-16-2009, 09:35 AM #14
RNcrps2 RNcrps2 is offline
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You will smile more when you meet him - he is awesome!! I mailed my information the first week of October and my appt with Getson was Dec 3rd. Because of Thanksgiving maybe it would have been sooner. So I waited 2 months. He sees new patients on Thurs.

I gathered reports from all of my most significant treating practictioners. To obtain your medical records you need to contact each facility and provide them with the appropriate authorization, usually via fax. And then within a week or so you should receive a packet with all of your reports which document each visit you had with your doc. I sent Getson a packet that included data from my personal care physician, my original pain mgmt guy, my Boston pain mgmt doc, my PT that I saw for a year, my rheumatology work-up, a neurologist I saw only once, and I think that's it. I made sure everything was really organized and labeled and in the right order by date.

I am currently just waiting to hear from my attorney on whether I can have the ketamine infusions that he recommended in his report...very nerve racking!!

Good luck and I will keep you in my prayers!! XXOXOXO Sandy
Sandy, Thanks again. I'll get on it today. Oh i feel sooo much better. Thanks.Thanks! I hope all goes your way. Where would u go for the ketamine? did he recommend 5 or 10 day for you? momof4
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Old 12-16-2009, 02:29 PM #15
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Sandy, Thanks again. I'll get on it today. Oh i feel sooo much better. Thanks.Thanks! I hope all goes your way. Where would u go for the ketamine? did he recommend 5 or 10 day for you? momof4
I would go to his office - right in Marlton, NJ. That's where he does it. His protocol is 10 days out patient to start. Then 2 days a week for a month, then 1 day a week for a month, then boosters as needed for the rest of my life. He said he would try to find a place for me to go to in Boston after the initial 10 day period, since Marlton is 270 miles away from where I live.

No word yet on approvals, though. I have no clue if my attorney is going to court on the matter. I have called him a few times but no one has let me know what is happening yet with my case. Bummer....

Good luck to you ...XOXOX Sandy
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Old 12-16-2009, 03:16 PM #16
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Originally Posted by vannafeelbettr View Post
Dr. Steven Rosen with Fox Chase Pain Management in Jenkintown, PA. He is the doctor that was able to get me the proper testing done to diagnose me with Brachial Plexopathy and Lumbar RSD --- when other doctors were calling it Fibromyalgia. He is extremely knowledgeable and hands-on. He did my surgery for my 2 Spinal Cord Stimulators and got me on good meds that I can't credit him enough on how he saved my life. Without him, I'd be in a wheelchair and atrophied away.
I'm glad for you too! I feel the same way about my Dr. I know He has save my feet, got me doing water therapy when they started curling off the floor to back down flat in 4 months. Meds got me sane again, sleeping again. He is a brilliant Dr., nerologist, psychiatrist and pharmacologist. He does trial studies, teaches, just built 2 clinics with HBOT. That's next I hope by the spring. Expensive My Dr. put me on high neurotin 3200 mg to stop the electric jerks jolts thru my body and brain. spasms etc. I've been off the meds for a year and the symptoms didn't come back yeah!
I have internal RSD. Any answers for that Body way overheated.Pelvic area, lower back pain
For 15 years, I'm so glad I'm mobile, no wheelchair, Even lowered vicodin because of sleeping so well on seroquel trial study. The restorative sleep has been wonderful.
Take care and thanks for sharing, loretta
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Old 12-16-2009, 06:53 PM #17
AintSoBad AintSoBad is offline
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I agree I am sure he has no idea. You were the one I read that saw both Drs. and suggested trying Dr. K if cant get in to Dr. S! It is expensive but i was willing to pay they just wont see me until w/c case is closed.

I'm not sure I understand.
Are you saying that Dr Knobler won't see you, due to the W/C case?
I wonder why that could be? (maybe w/c could call it a conflict?)
Dr S. also?


Pete
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Old 12-16-2009, 09:42 PM #18
RNcrps2 RNcrps2 is offline
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I'm not sure I understand.
Are you saying that Dr Knobler won't see you, due to the W/C case?
I wonder why that could be? (maybe w/c could call it a conflict?)
Dr S. also?


Pete
Dr. S would, but Dr. K doesn't take w/c. He doesn't take insurance you must pay and submit receipt yourself. Maybe his office doesn't want the hassle of dealing with insurance co. or w/c? His office help sounds very nice-told me when my w/c case is closed they would schedule me.
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Old 12-17-2009, 03:12 PM #19
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Dear Mom of 4--

Getson's office does accept WC, but NO other insurance. You will have to get his treatments accepted by the WC insurance company, unless you can pay for them yourself.

I just found out that my case will be going to a pre-trial conference in RI WC court, don't know the date yet. My WC insurance company, The Hartford, has refused to approve my treatments, and my attorney will have to go to court on my behalf. Due to my age, and because I have exhausted all other means of trying to get better, Getson's opinion is that ketamine is my only way of ever getting back to work.

I just wanted to give you the heads up on the insurance stuff. I don't know who your insurance is, or how mean they are. I am now accustomed (but not immune, it still hurts) to the Hartford's nonsensical ways of doing business. Rather than getting me back on my feet and back to work and HAPPY, it seems that they would rather pay for thousands of $$ worth of meds and treatments and disability payments each month. Dumb, dumb, dumb and counterintuitive. Getson feels I have better than an 80% chance of getting better, and might not even need a full 10 days initially of the ketamine to achieve relief. Just by doing the math you'd think the insurance company would figure out its a better deal for them to at least TRY to get me better...I am highly motivated and am deemed a good candidate for the treatment.

Good luck, I am thinking of you!! XOXOX Sandy

Last edited by SandyRI; 12-17-2009 at 05:46 PM. Reason: spelling and editorial
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Old 12-17-2009, 04:42 PM #20
AintSoBad AintSoBad is offline
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Originally Posted by RNcrps2 View Post
Dr. S would, but Dr. K doesn't take w/c. He doesn't take insurance you must pay and submit receipt yourself. Maybe his office doesn't want the hassle of dealing with insurance co. or w/c? His office help sounds very nice-told me when my w/c case is closed they would schedule me.
True,
Dr Knobler takes no insurance, period.

pete
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