~~Need Treatment Plan Advice???~~PLEASE??~ - Reflex Sympathetic Dystrophy Message Board

AngeInBoston · 07-28-2003, 09:13 PM

Hi Everyone!

Joey has had a terrible day...he's stressed out to the max, I think his medicines are giving him a bad side effect of extreme anxiety and emotions. He got angry at the hospital where he's been getting his Lumbar Blocks...their policy is a maximum of 3 blocks, one month apart. This has made me angry because I read about everyone else here having blocks much quicker together, and I worry that we're not attacking this monster aggresively enough and that our 'window of opportunity' is closing!

So, Joey quit that Pain Clinic, and we're wondering where to go from here?? Joey wants to go to a Neurologist, and I want to make sure ANY where we go, it's to someone who SPECIALIZES in RSD, or at least treats it very often! We're in Boston for Pete's sake.....but his Orthopedist who's been overseeing him from the onset (when HE operated on his foot for Morton's Neuroma, which triggered this RSD) doesn't know of a specialist.

So my questions are:

1) What are your thoughts on Pain Clinics vs Neurologists vs Orthopedists, or any other????

2) What about Physical Therapy? The last Pain Dr. said to wait 'until the pain was better' (?????), and his Orthopedist says he's getting good exercise going to work everyday as a Chef and all that walking....but I know he's not REALLY walking well, he doesn't roll his foot forward, just stiffly walks on his heel. I'd like to see him go to a nice place I found that has Water Therapy and hopefully Paraffin Wax (sounds GOOD!)....what do you guys think? Has PT helped?

3) I think Joey's on waaaaay too many meds by the different Drs. The Pain Clinic gave him the Neurontin, Elavil and Ultram (which another thread says is a bad combo!) and his Ortho gives him the Demerol, Percocet and Valium. Now he's having these weird anxiety problems, but he doesn't recognize it...or is it just normal breaking down from the weight of this ugly monster and the frustration?

4) I've noticed lately that he has varicose veins on his good leg, I assume from the heavy load it's suddenly having to bear.....is this normal? Has this happened to others? Should we be alarmed?

5) No one's ever mentioned the stimulators and pain pumps to him, and he doesn't really want them at this point, they give him the willies to think about. Are Blocks our only real option right now, besides the pain meds to mask the pain?

6)Why isn't there more awareness about this disease????

Thanks for your help!

~Ange

sharon1030 · 07-28-2003, 09:22 PM

I would find a doctor who knows about RSD. They are around and I think you have a good chance of finding them in Boston. I think you need one doctor to oversee treatment because when you see more than one and they are all giving out meds, they don't know what each other is giving. They're not the best at communication-that's my experience anyway.

I know life was different when I was diagnosed, but I had a whole bunch of blocks and a lot of other stuff was tried before they conceded that it wasn't going to get better (until that miracle happens that I've been waiting for!). I had a sympathectomy (don't do it) about 2-3 years after diagnosis and then the stimulator trial about 10 years into the diagnosis and the pump 15 years into it. Again, life was different then because they really didn't know much about it. If you think they don't now (which they don't), they really didn't back then!

If I were you, I think I would try to find a pain management doc who knows about RSD. I would think that most of them do, especially in your area and go for a consult with him/her. Good luck.

Sharon

AngeInBoston · 07-28-2003, 09:37 PM

Thank you Sharon! I've been thinking we need to grab this bull by the horns and get a solid treatment plan....at least have someone overseeing his case, like you said...I mean, his Ortho is already supposed to be that guy, but, I don't know...he's not really doing much but doling out the pain meds! Well, he did do alot of the testing at the beginning, but lately he's just the script writer, although Joey is very thankful that he's not cheap with the meds...he finds the Demerol gives him the most relief, and I say to get rid of the other pain meds. I think he may need a different Anti-Depressant than Elavil. Again, we just need to feel like someone is REALLY keeping track and caring about what happens......

~Ange

cattys · 07-28-2003, 09:47 PM

I also think a pain managment dr. would be who your husband should see. As for the veins in his one leg, that would make sense that all the weight is on the good leg which is causing the varcose veins.

Medications can cause severe mood swings, been there done that. He is on some potent stuff exspecially when combined together.

I truly think you would have better luck with A pain managment dr. Then maybe he would offer to do more blocks for him exspecially if they do seem to work.

I went to pt and and just didn't do anything for me. I would do my own things at home to keep my wrist mobile. This is just my experience with it.

I wish you both the best. I know this is a very frustrating time for you both. It proboly seems like things will never get better, but they will. Just hang in there and things will work out.

((((Gentle Hugs))))
Cattys

dayton · 07-29-2003, 06:02 AM

Oh, honey, I I think he's on some heavy duty meds. My orthor specialist said he could not help me and referred me to a pain management doc (dr. enty) who also has a clinic. I've never had anything stronger than ultram which didn't do squat. tried vicodin and phernagan (which I had at home didn't get prescription). my pain doc said blocks need to be given close together, my five were given one right after the other -- i mean one about every week and a half from april to end of may. get those blocks!!! make a list of all his meds and give them to your next doc. mind said if he gave me the stronger ones up front then later on if it progressed they would be ineffective because i got used to them (but I'm abnormal in my case). listen to the others here as they know a heck of a lot more than i do. but it sounds to me like you need a good pain doc. i wish i could help you more.