~Need Advice about 1st Block, PT, New Docs?~ - Reflex Sympathetic Dystrophy Message Board

AngeInBoston · 06-12-2003, 11:04 PM

Hi Everyone, it's me Ange, writing in lieu of Ramrod Joe again....I swear I'll get him to log on and learn how to do this himself!!! He HAS come by to read only without me, but couldn't reply. Baby Steps.

Anyway, Joey's scheduled for his first Spinal Block on Tuesday morning...and I've been having a heck of a time trying to research ANYWHERE/ANYONE who specializes in RSD???? Do you all have the same problem?

After his Dr. (Orthopedic Sports Surgeon who operated on his Morton's Neuroma, which seems to have triggered this whole mess) argued with me last week that "Percocet was the strongest thing he could be on" and that the RSD "Will burn itself out in about 2 yrs", and the block is just another way to spend time until this thing "Burns itself out" (Which he'd also mentioned 2 months ago when Joes foot was first not healing fast enough), and after he mentioned off handedly that this is so rare he only sees one to two new cases a year.....I decided it was time to get the heck away from HIM!! I mean, at least he HAS been understanding enough and giving Joey pain Medication, and after enough arguing we got him to give him Demerol, which was a God Send to poor Joe, he's finally feeling pretty good, I guess they work good mixed with the Valium and a Percocet or two!!! Oh yeah, the Dr. also p'd me off when he looked at me like I was a crazy woman when I mentioned the Spinal Stimulators alot of you have had implanted....like he'd never even heard of it....and he thought I was bizarre by asking if Joey needed a referral to a Neurologist, and that many of the RSD patients I'm in contact with on the Internet DO have Neurologists.

So I'm here to ask you all your opinions.......first of all, what kind of Dr.s are working best for YOU? DO you recommend I try to find a Neurologist who specializes in RSD? I can only hope about the Anesthesiologist he's scheduled with next week....no, actually, if I have time tomorrow I COULD try to call that office and ask about his RSD experience!

Next, what about Physical Therapy? I didn't meet her, but Joey said his PT was a ditzy young girl who said she could tell RSD a mile away and he did NOT have it, I think mostly because he doesn't have that extreme sensitivity on the outer layer of his skin....give him a squeeze though and he'll yelp! He doesn't have the super burning pain either. Anyway, I've been thinking it would be good to get him to a PT who specializes in RSD (??Maybe on Mars, not around here??) It seems to me that Joey would do really good in a hot whirlpool, with super water jets blasting at his leg.....does anyone out there get anything like that? And what about Massage Therapy? Can we get the Dr to prescribe it and insurance to pay? We're going on vacation in a couple of weeks and I found a wonderful looking Massage Place near a motel we're going to for two nights/3days in the White Mountains....I'm thinking of scheduling him for at least two full body massages as a luxury...they can stay away from his leg if he wants them to.....but maybe that could help too? He can be pampered while I drag the kids through the Amusement Park! LOL.

Well, thanks in advance for any advice you can give, we sure need it!

dayton · 06-13-2003, 06:24 AM

I think the others will agree with me (ya better!!) when I say first (1) I'd run as fast as I could away from that doctor and PT therapist and (2) get to a good pain management doc or I go to a anetheologist (sorry for spelling). They slapped me on elavil 75 per night and neurotin at my first visit before I even got to the pain dr!!! They ALSO had me scheduled for blocks before I even realized what I had. Please don't mess around -- get him a good doc NOW.....

stickgirl · 06-13-2003, 08:36 AM

It is so hard to trust any doc when your going thru this at first. My reg doc is an ortho surgeon who is an upper extrimitys specialist, also see the Anesthesiologist that works with him. This Anesthesiologist does my nerve blocks when my ortho manipulates my elbow. He is also the one that got me hooked up with support groups for rsd. I also have a pain managment doc who works closly with the other 2. The pain doc had done the weekly nerve blocks that was done in the beginning of my rsd, he also did my pain pump and still involved closly with my case.

He can change therapist, i did several times. Either ask for a diff therapist at the place he is at or go down the street/around the corner to another one. Your in Boston, right, there is a choice there I'm sure. Go elsewhere, you don't have to stay with someone you do not feel comfy with. I switched 3 times, no one made me feel bad about it.

The Anesthesiologist you are see, probably has done thousands of blocks, I mean lots of rsd patients are treated by them. in fact i think pain docs are also Anesthesiologist. You have choices if your in a big area, make phone calls if your not happy.

I can tell you, at the beginning of RSD treatment, everyone panics and feels they are not being treated properly (some are right). I panicked, dayton was panicing also.

I called, every doc and therapist in my area. I even intervied therapist, found mine and have kept her. I hated my docs at first, my Anesthesiologist was the one that nelt down talked to me calmly/softly and I learned from him. Now I wouldnt trade any of them

I wish you luck, stay calm and make calls. That will help you, it will help you decide.

Stickgirl

Soxy · 06-13-2003, 10:14 AM

I go to a physiatrist who specializes in physical medicine who is in charge of my PT program. He is the one who first diagnosed my RSD. My PT is wonderful. She is gentle and never pushes me too hard. She says that with RSD patients that's the way to go. If it starts to hurt, back off. My diagnosis was confirmed by my pain/anest doc who also has done my lumbar blocks. I have had RSD for a year. I do have an app't with a neuro next month and my physiatrist who is the one overseeing my care is fine with it. I have some back involvement that is puzzling so he is all for another set of eyes checking me out. I'm not thrilled about it but my case is odd because as I've said before the onset of RSD in me was not caused by a fall, operation, accident, or any other trauma. I just woke up one day and WOW! As my friend, Stickgirl said the best thing is not to panic. If you are not happy with the docs go elsewhere. Follow your gut feeling. When I go to PT now since my foot isn't too bad but my back is, my therapist mostly does massage, ultrasound, some mild stretches - nothing too radical. She realizes that with RSD doing too much can fire up the nerves. Caution is the best. Hang in there. Tell Joe the same.
Soxy

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Believe in Miracles!!

RSD_Angel · 06-13-2003, 11:15 AM

Morning Ange and Joe

We will get Joe on her one way or another..lol

Good luck with the spinal block on tues! Hopefully he will get some relief and get off some of the pain meds. I still cant beleive that his doc told him that RSD burns itself out and its just a matter of time. And the blocks is just time to spend...uggghhh!! And like stick girl saids its not that rareanymore, its just that docs are not educated on it and treat it wrong. And you are lucky that he is giving Joe pain meds bc some doc's think that this is all in our heads and that we are wimps with pain or that we just want the attention.. And why did he look at you like yo had 2 heads when you asked him about the stimulator? I mean..??

Seeing a neurolgist is ok, but a pain management doc is what Joe really needs to see. They dont really treat people with pain syndromes. They ussally do testing to make sure its nothing else and then send you to a pain mang. doc.

When I did Phy. Ther. I did it every day for 3 mos and the before then i did it 3 times a week for 5 mos. And i was in a warm whirl pool, first one that i could just stickmy foot in with the jets spnning around, then i moved to the walk in tank where i was like in a mini pool but it was heated and had the jets going. This was the best therapy i could get. If they just did PT with out the water i wouldnt have been able to handle it at all. After i got ut of the water, they would massage it to help the swellin and also try and move it around to get the range of motion active. So i would ck to seeif there is somone in the PT group that Joe is seeing tht has delt with RSD before and knows what kind of treatment he needs and that not all treatmnts are for RSD'ers

I have found a couple of doc's in the boston area that specialize in RSD. Give these offces a call and see if they can help better and know what they are tlking about. Tell them when yu call how long it has been that Joe has had RSD and his treatment is just starting and youneed help to try and controll his pain better. I cant list the phone numbers bc the boards wont let me but i can give out the names and addresess of them so here you go!!

Dr. Daniel Carr of the Anesthesiology Department, Division of Pain Management, at Massachusetts General Hospital in Boston.

Dr. Caneris
Pain specialist New England Neurological Associates PC220 Sutton StNorth Andover,
Massachusetts 01845

Let me know how you make out on Tues and if you call anyof these doc's!!

Bryn

PS,
I see a Pain doc that is a anethsiologist but hasis own practice that is pain mang. I also see an orthopedic doc, only because of the severe ostoporosis and the severe inversion ofmy foot.

[This message has been edited by RSD_Angel (edited 06-14-2003).]