Angry, frustrated and sad
 

Excited waiting for Dr. S appt. in March and yesterday appt cancelled b/c temp. filled me in on wrong day. next appt 2012. Tired of crying. Spread from arm to feet and they burn and ache so bad. I think i was holding on for Dr. S to tell me something positive. Called Dr. K in Fort Wash. and wont take me b/c w/c! Cried again. I like my pmdr. but i want expert with many years experience who specialize in RSD to give an opinion for tx. W/C denies payment- won't cover feet. Guess they really don't know RSD. Frustrated. Sad. Need help. I recently saw a list of Dr. in USA who are specialize in RSD(thought it was on RSD website) but cant find it. Anyone know? momof4

Sorry to hear such bad news. 2012 is a stretch for sure. Check this site out and good luck, RNcrps2.

http://www.rsds.org/1/organization/index.html

Where do you live?
 

Sorry you are having such difficulty. I saw you mentioned wanting to see DR. S., which I know is in philadelphia and you also mentioned a doctor in Fort Washington, but I don't know if you are referring to FW, PA. If you are from this area, I have a great RSD doctor in Jenkintown to recommend.

Vanna

Yes,
Doctor Knobler is in Fort Washington PA.
True, he takes no insurance. And the first consult is expensive.
(I think you should speak with your WC lawyer)
The problem is, the insurance companies DO KNOW RSD!
They know it's a lifetime of problems.

But, what Dr S. office did to you, is unfathomable!
I'll bet, that Dr. S has No Knowledge of it!

Dr Schwartzman, and Dr Knobler were partners @ Jefferson for many years.

Vanna, let's hear that other name?

Thanks.

pete

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

I'm so very sorry for what happened to you. We all cry with you and for you. Please don't give up. Pete's advice is good. I know he's got Dr. Knobler who sounds wonderful. I'm sure too Dr. S doesn't know. This insurance mess is awful. I found a wonderful Dr. -in year 6 with him. Paying $250 an hour once a month. But he is psychiatrist, neurologist and pharmacologist and has saved me from going down hill. A lot of good Dr.s won't take insurance..
You have a good lawyer don't you? I didn't pursure lawsuit-just no energy for that. It's been 15 years for me, and I can't work anymore, this whole thing has taken it's toll on our family financially and emotionally, but we are still closs and supportive and doing our best to work thru it. Looking for the good and grateful for life, even though 'life' is different. You are in my prayers. loretta with soft hugs

My doctor's name is....
 

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.

Hi. Yes Fort Wash, Pa. Who do you know in Jenkintown? Thanks. momof4

Vanna has given that info, one post ahead of yours...

Hope you got it!

Hope he takes your insurance!!

Pete

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.

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

Thanks Pete-i'm all out of order-lol. They said i have to pay first and get reimbursted by w/c.

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

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

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

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.

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

True,
Dr Knobler takes no insurance, period.

pete

Hi Sandy, I am also on w/c and i don't know what they will do. I hope yours gets approved it would make the most sense-80% chance is very good odds. I'll keep you in my prayers. Keep us informed. momof4

Dear RNCRPS2,
I had seen a Dr. McCarren up in the Fort Washington area (or near Exton) and he worked with Dr. S years ago and he knew RSD and was very sympathetic to my needs and I used WComp there. I had an IME with him and he was good. Of course the ins co didn't like him because he sided with me. Let me know if you need his information and I'll dig it out for you. I think his first name was Donald.

Hope it helps and good luck. Keep fighting WComp as they are such a mess and think they can get away with anything they want to do.
kathy d

Thanks Kathy- I will look him up. momof4